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KNOWN BY GOD?

INDEX

1. Details for Publishers 1

2. Preface and Introduction 3

3. The Birth of a Disabled Child 5

4. Medical Facts about Spina Bifida and Hydrocephalus 8

5. Difficult Decisions 10

6. Coming Home 15

7.Medical Help 18

8. Communications 20

9. Moving On 27

10. Growing Up 32

11. Conclusion 36

12. Footnotes 37

13. The Groningen Protocol (2004) 38

14. Amen. A postscript. 42

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TITLE: KNOWN BY GOD?

AUTHOR: Jennifer Gray

CATEGORIES: Medical ethics, Christian meditation, Disability c.23.000 words.

SUMMARY: This book was originally written and copies circulated privately to churches and communities in both France and England ten years ago. It was well received. Since that time there has been further evidence that infanticide amongst severely disabled newborn babies is still being practiced in Europe (see footnote at the end of the book). This book looks at the problem of disability, the ethics of non -intervention or even assisted death in the newborn, and meditates on thoughts and questions that most people feel when confronted by disaster and pain. From this meditation, come some conclusions, but certainly not all the answers. The purpose of the book then, is to inform the public about the facts of certain aspects of obstetric and neonatal care. It shares with the reader the journey through a maze of conflicting interpretations of what is ethical, what is right, and what is loving, by describing the life of one such baby. It is the story of a little girl, born with severe spina bifida in 1978; who despite being deprived of food and water after her birth in an attempt by doctors to end her life ‘peacefully,’ grew up in a normal family, attended normal school with her brothers and received her Bachelor’s degree in forensic science eleven years ago. The religious style of the book might be a stumbling block for some readers. The inspiration for the book came following a long period of meditation on the kind of suffering often seen by the author during her work as a doctor, later experienced by herself and her family following the events surrounding her baby’s birth. The philosophical question remains: how may one describe and judge these events most effectively? For many this would be through humanist and moral language. The author has chosen to adopt a religious argument as it reflects more truly her thinking. But either way the question remains – what do we think about suffering? How do we deal with this problem? Is it possible to reconcile in religious language the goodness of creation, the love of God that is taught in all major faiths and especially in Christianity, with the presence of suffering amongst the innocent? The subject is dealt with in a personal style, including prayers written by the author during the production of the text. These are in small italics.

ILLUSTRATIONS: COVER: (or frontispiece): Susan in 1981 aged nearly three. End piece Susan 2011.

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PURPOSE: It seems timely to formally publish this book so that more people can be made aware of distressing practices apparently still being carried out in obstetric units here and abroad. We need to question again the decision of those doctors who make decisions to end the lives of babies with spina bifida, and to bring this practice to the attention of people of all faiths, or none, to encourage debate and positive action before the same practice begins in England again, as it was done in 1978. The book might also help others to reach some resolution in their thinking about the dilemma in trying to resolve the dichotomy of the loving God who sometimes doesn’t seem to care, and the continuing faithfulness of those who overcome these doubts.

THE AUTHOR retired thirteen years ago and was living in France until 2013. Before this, she was a doctor in general practice in Birmingham for 28 years, and later, a Police Surgeon. She also has degrees in music and art history. She was on the Editorial Board of World Medicine and has written articles in the medical press as well as book reviews for the British Medical Journal. Since her retirement she has also written an e-book novel, ‘St. Agnes-by-the-Dam’; two published anthologies of poetry: ‘Police Surgeon’, and ‘Too Late to Plant Trees’; other Christian and meditative poetry, many humorous poems and poetry for children; an account of the 19th century Birmingham Baptist minister Thomas Swan; twelve short stories, two one-act plays; a thesis and small book on the little known artist, Theodore Garman, together with an article about him, published in the British Art Journal. She has been writing ‘Known by God?’ for several years.

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Preface

It is 2012. I have just put down the phone. The call was from our daughter, Sue, who lives in England. She is 34 years old. She wants to check if we are OK. Here in France we are in the middle of what is called a canicule, a heatwave, which means that today we face temperatures of up to 40°. It’ also hot in the south of England where she lives.She is worried about our health, in this heat. She warns us to have plenty to drink, and to stay indoors until its cooler. She’s like that. She would like to be here with us, but that isn’t possible. She is too busy at work. She also committed to driving a friend to hospital daily to receive radiotherapy. She sends all her love and tells me to remember to keep a hat on if we go outside.Practical, loving, and full of fun and enthusiasm. Work, partner, friends, dogs, making jewelry in her rare free time, her life is truly full and fulfilled. She gives so much to so many people. She has gained a level of optimism for life far more than anyone else that I know. She is truly blessed. She is also disabled. This is her story.

Introducti on

It seems an appropriate time to record the progress of one disabled child’s experience, the effect on her family and later, her influence on others in the world around her. Once again, the subject of allowing the ‘euthanasia’ of disabled babies is in the news. In the Netherlands, euthanasia remains technically illegal for patients under the age of 12. However, about eight years ago, Eduard Verhagen documented several cases of infant euthanasia. Together with colleagues and prosecutors, he has developed a protocol to be followed in those cases. Prosecutors will refrain from pressing charges if this "Groningen Protocol"(see endnote) is followed.The Pope has condemned such practice, the Anglican church is ambivalent. Society is also beginning to accept the legal abortion of fetuses with minor defects like cleft palate, in one case after the legal time limit of 24 weeks. Perhaps the telling of this account of a child’s life will have some influence in how difficult decisions can be made.

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The story begins in Birmingham in 1977. It was a glorious summer that year and we grew spinach in our garden. This would turn out, unexpectedly, to be a useful scientific fact. Our daughter Susan was conceived that summer and born in April 1978. To our great distress she was born with a severe physical disability – spina bifida and hydrocephalus. Why?After the initial shock I found myself trying to find answers. Not just medical ones, although there were plenty of questions there, but spiritual ones. It didn’t help when one of my patients was to tell me, in what he must have thought was a helpful way, that it was all due to sin. Wow! Yes, I have my faults, but I think we had lived quite an ordinary, healthy life until then and the remark jolted me. If someone can honestly believe in a God who would impose that on a baby, I had no more interest in religion.

‘You created every part of me;You put me together in my mother’s womb’(The Old Testament, Psalm 139, verse 13)

Since that morning in the surgery, I avoided facing the argument about the non-medical cause of spiritual, mental and physical suffering . I was a doctor, a general practitioner, and saw many people who had suffered almost beyond endurance. It made me angry as well as sad and usually when confronted with any difficult passages of scripture that related to such issues I tried to rationalise them. God supposedly creates all things, and according to the Bible ‘knows us in our mother’s womb’. He doesn’t step in to prevent evil, particularly if the evil is primarily the result of man’s foolishness or disobedience, but surely he is not responsible for inflicting pain and misery on a new-born baby? For years I revisited this argument frequently, never finding solutions.Since we retired to France some years ago, I have belonged to an Anglican Fellowship in the Chaplaincy of Aquitaine. Last year, while studying a text in a home group, I had to face these questions again. I found the words almost unbearably painful to read, as they dealt with those passages of scripture that I had always found hard to accept. Further on in Psalm 139, in verse 15 the psalmist (probably David) declares:‘When my bones were being formed, carefully put together in my mother’s womb, when I was growing there in secret, you knew that I was there- you saw me before I was born’.How could I explain this verse to a child with a spinal malformation?Can God be held responsible for deformities? Why was our daughter born with such a severe disability? I decided that it would help me in my seemingly lifelong spiritual journey to write about these dilemmas, recalling those dark days early on when our baby was thought to be unfit to live.And as I was writing this account of the birth and childhood of our disabled daughter I felt I should record my thoughts and prayers that seemed relevant to the text. These are shown in italics. I hope that this will be a helpful book for many people who share my feeling of uncertainty about religious faith and may answer some of their doubts. It will, I hope shed more light on

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the present withdrawal of treatment for certain groups of people and the many ethical situations that are presented to doctors to solve.

Lord, I am writing this because I believe it is your will that all the facts, the sorrows, the joy and the pain that came from the birth of our daughter might be shared by others. Many people find it hard to make sense of this world and its imperfections. Those who trust and want to live their lives in faith, also have questions about suffering. Give me courage to face up to the truth about imperfection as it is revealed by my reading, thinking and writing and let me trust that with your help this truth will be found. Sometimes, from our limited perspective, we cannot believe that you always answer prayer. But over the years mine have been answered, and I am thankful.

The Birth of a Disabled Child.

‘Your hands formed and shaped me…’(Job 10:8)During my pregnancy I had realised that something was wrong with my baby. We already had a two year old son, Paul, and that first pregnancy had been straightforward. But this one was different. At 25 weeks her growth was slow and she lay in an extended breech position – often an ominous sign. I use the gender ‘she’, although of course, in 1978 it wasn’t possible to assess the sex of a baby before it was born. But I won’t use the term ‘it’ and it will soon become clear why that should be. My doctor at the hospital at that time was unconcerned and felt that my dates were probably wrong and that she would eventually ‘catch up’. I didn’t correct him, but I knew for several medical reasons that this was not the case.I had not received any medical tests to exclude foetal abnormality. At that time it was not routine practice, but I thought that I might be advised to have amniocentesis to look for Down’s syndrome, as I was an older mother. I can remember coming home from the booking clinic at the hospital and joking with my husband that I must look younger than I was, as the test hadn’t been offered! This test would also have rung alarm bells in a case of spina bifida, leading to all sorts of other investigations and terribly hard decisions perhaps leading to a ‘therapeutic’ abortion. Two weeks before she was born, the diagnosis was almost certain, as tests had shown a mass on the baby’s spine. The obstetrician suggested immediate delivery and asked me to come into hospital the next day. He looked me straight in the eye and suggested that if, after the womb had dilated and he could feel this mass manually and confirm it to be spina bifida, he would make sure he would ‘get it out as quickly as possible’. For most of the time that I was in hospital our daughter was denied a gender. I think it made it less hard for staff, to deny her this sign of human life. I was stunned but had doubts about the diagnosis. So I insisted that the baby be treated in exactly the same way and with the same respect as one would in delivering a normal child.The next day we got to the hospital and I was invited to go immediately to the labour ward, even though I was not, of course, yet in labour. After assessments by an anaesthetist who happened to be a friend whom I had trained with, it was decided that I would stay in

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overnight in a ward, and have my baby the next day. The diagnosis still seemed to be unclear, but there was a sense of urgency not to allow me to go to full term.We had decided that my husband would not be present at the birth. In those days it was less usual for the father to come, and besides, I thought it would be better if he carried on at work as usual and looked after Paul. So he only came to the hospital when the baby had been born.April 22nd 1978 is still very clear in my mind. My overwhelming feeling was one of guilt. I’m not sure why, but I was obviously causing a certain amount of discomfort to the medical staff who seemed to speak in whispers at the end of the bed. It was not usual then to include patients into any medical discussion. I felt I needed to apologise to someone, but I didn’t know to whom, or indeed why. First of all there were difficulties in putting in the spinal epidural, an anaesthetic, so I apologised. But the next strike was perfect and the delightful numb sensation flowed down from my waist where pain was beginning. The drip containing the drug to induce labour had been set up, and was starting to work. At one stage the consultant examined me and confirmed that the diagnosis really was spina bifida. He turned to the staff and ordered that the drip should be turned right up to speed up delivery. I was appalled, as I knew that this could have a catastrophic effect on the baby, causing foetal distress – and perhaps death. All the monitors were switched off. Was this a late termination without consent? I was unable to question their decisions, and I was not involved in any decision-making. In those days a more authoritarian approach was practiced and the consultant’s word was taken for granted, not challenged.At no time had I expressed a wish that my handicapped child shouldn’t live. In fact, I was firm that I wanted the delivery handled “humanely”, as it would be for any other baby. I had a terrible fear that any interference might cause unnecessary suffering or even the baby’s death. I had read only a few weeks before of a baby that had been diagnosed as having hydrocephalus (a condition that often accompanies spina bifida) and the plan had been to destroy the baby’s skull by ‘needling’ it (destroying the skull to minimise its size) while it was still inside the womb, in order to ease delivery. Thankfully, in that case that procedure failed and a normal baby was born. The account of that case (from a leading medical journal) led me to doubt the diagnosis of our baby’s condition. All I wanted was the most appropriate delivery for a breech presentation. Lord, this sounds as if I am bitter and angry, but you know that at no time did we ever feel hostility towards the staff. I believe that what happened in that hospital was done in compassion for us. It was just that their interpretation of the case, and ours, were different, and there was little true communication between us. I need now to explain the attitudes of the people involved in order to help describe their point of view. So please help me to search my memory and make sure that account is truthful. Thank you for being there with me then, and helping me now as I record the baby’s birth.

In due course the baby was delivered as a breech. Silence, broken by someone saying in a tone of relief ‘the foetal heart has stopped. It’s alright, it’s a stillbirth’. This is a very strange thing to hear when you are giving birth. One of the nurses began to cry. The atmosphere was tense. I was offered some diazepam to calm me, but I really felt that I didn’t need it, but I

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think the nurses could have done with some. Throughout I could feel a complete calmness, and could even imagine my father with his zany sense of humour saying ‘Well, you’ve really done it this time!’ I apologised again, but it didn’t seem to help. Perhaps it was a miracle happening, but as soon as I knew the baby’s plight (and indeed our own because I sensed that her care would be a major concern throughout her life), I began to have thoughts about how beautiful the world was. I was particularly drawn in my imagination to our home, and to all the things I loved about it – how lovely the sun looked when coming through the stained glass windows over the stairs; how clean the house smelled when I’d polished the staircase; how many flowers we had in the garden then; how glad I was that I had studied music and knew what a mystical magical world is there to be found just sitting and listening; how a friend told me of a woman who had been bed-ridden and had not left her room for years, and yet was a source of inspiration to the many people who brought their problems to her. In short, I was given a vision of a whole range of the potential of the human spirit to love and to be loved, and was at peace. I thought that perhaps something might be retrieved from this disaster after all.

Lord, I thought of the everlasting arms, which I now know surround us in our greatest time of need. Your presence in the hospital in those first few awful days helped me to keep a grip on what was happening even while I couldn’t understand why it should be, and what might happen next to our baby.

The baby suddenly cried, then went silent. The delivery room also went silent. Someone said ‘I’ll take it away’. The one minute and five minute examinations took place in the next room but I was told much later that her Apgar scores were extremely low.(For those who are not familiar with obstetric or paediatric jargon, Apgar scores are the ratings given to assess the five important vital signs. Appearance (skin color), Pulse (heart rate), Grimace (reflex irritability), Activity (muscle tone), and Respiration.Each sign can score 2, so the best total is 10. The first reading is at one minute and the second at five minutes. Our baby’s readings were ominously and dreadfully low, at 0 and then 1. Usually the outcome from Apgars as low as this would indicate a prognosis of severe mental retardation.

I was fairly sure that the low readings were the result of the medically engineered precipitous and dangerous birth, and not from any pre-existing medical condition. Until I had been induced, the baby had been apparently quite comfortable (but not kicking because of the neurological damage she had suffered because of her condition).

The next day happened to be my birthday. My husband, who had been waiting outside during the delivery room after all, and had been so supportive afterwards, arrived in the hospital with a birthday cake that he had baked himself. It brought a welcome sense of normality to the day and we began to feel more positive.

During the next couple of days I felt ostracized by some of the staff, who seemed unable to spend time with me, although I don’t think I was a difficult patient. It was as if they were

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embarrassed and upset and unable to share their feelings with me. Also there were a lot of agency nurses on duty who had not had time to ‘bond’ with any of the patients, but just followed the rules. The first night I asked for help to go to the toilet (it is often a problem to pass urine after an epidural) and was told I must not leave my bed (quite sensible, as it’s possible to pass out from dizziness following the procedure). But no alternative suggestion was offered, so instead of risking rupturing my bladder I decided to walk to the bathroom instead. The telling-off was just like being back at school! We had the opportunity of speaking to a paediatrician, who gave us a grim scenario of our daughter’s future. She would probably have severe mental retardation ‘nothing better than a vegetable really.’ She would be unable to stand or walk but might be able to crawl. She would have no bladder or bowel control. Her head had already started to enlarge, and there was no doubt that she was developing hydrocephalus (water on the brain).Our doctor said that no-one would consider treating this with a valve to drain away the excess fluid, as she was too severely handicapped. We had no-one really to discuss these bleak facts with. There was no social worker around and the nurses seemed as numb as us, and very busy.We were discouraged from going to see our baby, but then another woman on my ward, a kind and ‘down to earth’ sort of person told me to go and look at her ‘She’s the prettiest one there!’ she smiled. So we went and we finally saw our daughter. We were amazed! She looked so beautiful, waving her little arms around in the air, flapping the sleeves that were much too big for her. She was very still from the waist down, and we knew that she would never have movement there. I prayed for her from the depths of my heart.She is wonderful. Her hands and her arms seem to work well. Help her, help her…Then I remembered some poetry I had read once:‘In this Little Thing I saw three properties.The first is that God made it,The second is that God loveth it,The third, that God keepeth it.1

It had been written by that wonderful Christian mystic of the 14th century, Julian of Norwich.This led me to think how much this baby might be able to offer the world with her eyes, ears, hands and voice. After all, there was so much of her that still worked. There was great concern that she would not live very long. The vicar of our local church, The Church of the Ascension, Hall Green, came into the hospital and baptised her, and although she was only wearing a plain hospital baby gown, I thought she looked lovely, but so tiny, so vulnerable. She was named Susan Amanda. The second name had been my mother’s, who had died some years before. It also means 'worthy to be loved'. People’s response to her birth took us by surprise. None of the usual gifts were sent, presumably because people realised that toys and clothes might not be needed, but I received many, many flowers (large bunches of spring flowers still bring back poignant memories). But one friend gave me a small wicker basket with homemade bread, which seemed to radiate the significance of life.

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Medical Facts about Spina Bifida and Hydrocephalus

Spina bifida is one of several congenital abnormalities involving the spine and nervous system which come under the general title of neural tube defects. Almost before the mother is aware that she is pregnant, the deformity will have occurred. The spine and spinal cord are normally open in the embryo until about the fifth week after conception, when they then wrap around and close forming the real spine with the spinal cord inside. If this process is delayed in any way, the moment of closure of the spine does not occur and at its worse manifestation the child is born with an opening, like a large ulcer, on its back sometimes with neural tissue showing through. Often the back leaks cerebro-spinal fluid (CSF), and obviously there is a very great danger of an infection being carried through this ulcer to the brain causing meningitis.Usually the baby undergoes surgery immediately to close the opening. Sometimes following surgery some improvement in restoring a viable nervous system in the affected part of the body can be achieved, but usually, depending on the severity of the lesion and the spinal level at which it occurs, a person with spina bifida will probably be either totally paraplegic (paralysed in both legs) or have difficulty with walking, requiring crutches. They will have interference with bladder and bowel function, and diminished or absent sensation from the level of the lesion down the rest of their body. This in turn can lead to pressure sores or burns on the legs if they are not protected. Closing the back can lead to another related condition, hydrocephalus, or water on the brain. This is because other structures higher up the spinal canal or in the brain are also malformed and can cause disruption to the normal steady flow of CSF around the brain and spine. Whilst there is leakage from the wound a steady balance is usually achieved, but once the wound is closed the pressure can build up causing brain damage and a steadily enlarging skull. Until the middle of the 20th century, the most severely afflicted children with spina bifida died, if not at birth, then in early childhood. If hydrocephalus was also present, that, too, contributed to the death rate. There were no antibiotics to treat related kidney infections (common because of urinary incontinence and poor hygiene), or to treat meningitis, acquired through infection getting into the spinal fluid and on to the brain, through the large open wound on the back where the spine and skin has not formed properly. There were few aids and almost certainly no schooling for such sad cases. Some children whom I saw in a local long-stay paediatric hospital during my medical training, and who were suffering from the most severe aspects of the condition, had grossly large, distorted heads, were severely subnormal from the raised pressure inside the skull, and even had skin ulceration of the scalp from pressure sores. They were also blind.In 1958 the Spitz-Holter valve was invented which when placed into the brain of the affected child drained the excess fluid and restored equilibrium of CSF so that the head did not become very enlarged. But in the early days the procedure was fraught with difficulties, and infection of the valve, or shunt as it was called, often led to meningitis and subsequent mental

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or physical disability, or death. Some doctors believed it better not to use this procedure, but those who had been denied surgery, like the ones I had seen, ended up horrendously afflicted.Once the valve had been invented, some alleviation was achieved, and then surgeons found ways of closing the spinal lesions and more patients reached young adulthood. But by the 1970’s some centres were auditing the efficacy and economic viability of such treatment. Quality of life issues began to take a more significant role in the arguments used. As doctors saw it, the patients they had treated were living blighted and illness-ridden lives, and were often very obese, smelly, and mentally retarded. They also noted that these patients were expensive, and, (understandably), used hospital and social services extensively. Their questions were: what had they achieved? Wouldn’t these lives have been better terminated at birth?In the late 1960's, an eminent paediatrician from Sheffield, John Lorber, analysed all the relevant findings, and proposed categories relating to the severity of the disease. The fifth category was the one that our baby matched – a high lesion that started in the thoracic level of the spine (well above the waist-line) with no movement in the lower limbs, and hydrocephalus. The recommended ‘treatment’ for babies in this category was nursing and no active treatment, including feeding. Water only was given. Interestingly, another doctor, in Liverpool, Professor R.B. Zachery, disagreed with these criteria and continued to look after these children long after Lorber’s work was generally recognised.

Today this is considered history and the 'Lorber criteria' are no longer used.

No-one at the time of Susan’s birth was sure of the cause of the condition. Someone came from a University Department with a questionnaire to see if I had taken any medication that could have caused it. Staff in Occupational Health seemed interested that I had worked as a surgical house officer within the past five years, and been exposed to anaesthetic gases, but at that time no-one really understood the cause of neural tube defects, except that it might be a deficiency of the vitamin, folic acid. But in our case that was unlikely as we had been living on a diet of home-grown spinach (a rich source of the vitamin) for the whole of the summer that our child was conceived. Both my husband and I are of Welsh origin, which was another factor. The incidence of spina bifida is much higher amongst Celtic people, and even amongst those Celts who had moved away from their land, like the Irish in America, there is a higher incidence. This suggests a genetic cause rather than an environmental one. I had also had a severe viral infection when I was about 5-6 weeks pregnant and some doctors thought that this could have triggered the late response to the mechanism that closes the neural tube and vertebrae at about that time. Folic acid has since been given routinely to women before they become pregnant in order to reduce the risk of a neural tube abnormality, and that, together with abortion on demand for disability, following the routine use of the measurement of blood alpha foeto- protein (AFP), has greatly reduced the number of live births showing the condition.

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Difficult Decisions

‘ Do not utterly forsake me.’(Psalm 119: 8)

We couldn’t understand why we kept being ‘reassured’ that our daughter would be dead within a week. There were murmurs of the risk of meningitis that would kill her. The lump on her back was in fact an open wound that showed layers of spinal tissue inside. She was so small that the dressings on the wound were contiguous with her nappies. So it was feasible that germs from excrement might pass into the wound if it were not kept clean. But how could the doctors and nurses be so certain of this? After all, she had survived a traumatic delivery, so she was tough. She looked healthy, even if she was disabled by paralysis. So why…?Some months before Susan's birth, I had been following some correspondence in the Times between an eminent lawyer interested in ethics, and a paediatrician in a Midlands hospital, not Birmingham. The debate had been on the problem of dealing with babies born with severe abnormalities, and included a discussion about the option of infanticide in the worst cases. Again I felt it to be a strange coincidence that I had followed that correspondence, since I usually never had time to read much during the week. It seemed that some members of the medical profession were making arbitrary value judgments and impossible predictions about certain babies, certainly those that seemed to be so disabled that they might never have the chance to lead a ‘normal’ life.

‘The world defines greatness in terms of power, possessions, prestige and position’2 Most doctors as a group are generally clever, ambitious, successful people from backgrounds where achievement and material success might be the main goal in life. The idea that a person can live (or exist) contentedly with no ability to move independently, to control bodily functions, to earn a living, to have children, is so impossible that the simplest and kindest solution must seem to be to end such an impoverished existence before it really begins.This definition of a successful life widely held by society and based on materialist values is, I believe, false. I think that the true definition of success is that of one who has adapted to his own lifestyle and is content and able to communicate his inner peace. People who cannot adapt and be flexible, who don’t believe in ‘live and let live’, and who want to tidy up society eugenically, are, I think, the ones who are disabled for they have lost their humanity and their spirit. Many excuses are given for the efficacy of abortion and infanticide of the disabled. The cost of care is often quoted, but in reply there are still some with a moral conscience.

‘We are constantly bombarded with the costs of keeping the handicapped and dying alive. I submit that the cost of all the handicapped, mentally and physically, is but a drop in the bucket compared to the cost of the morally handicapped.’3

We try more than ever in these technical days to control our destinies. We have conquered many diseases and improved the social environment of our population. But in terms of human

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happiness, I am not convinced that we are improving our lives by making it easier to get rid of our social problems if it means losing our humanity in the process.

Lord, you know that disability will often determine which social category you end up in, and sadly, too often, it is one of the lower ones without any power or prestige or position. But is this actually a disadvantage? In the eyes of the ‘me-first’ world, definitely it is. But in your eyes, the world is turned upside down and the disadvantaged and the meek will ‘inherit the earth’. Bless all those who lack worldly things. Strengthen and support the meek, the poor, the disabled, and those disadvantaged in the eyes of the world by any other affliction.

As I sat next to our daughter’s cot I recalled the correspondence that I had read in The Times. I needed to get some real answers quickly. Was she really about to die from ‘benign neglect’?I was unable to see the consultant, but when his registrar came to do the ward round I told him of my fears for the future of our daughter. I particularly asked him about how she was being fed. I had been sad that I had not been able to feed her myself, but at some time during my pregnancy I had read an article in a woman’s magazine about a mother who had had a disabled baby. She was distressed and tried to breast-feed it. Apparently she had been led to believe that ‘the authorities’ were so appalled that they arranged a psychiatric assessment for her, and she had the baby taken away from her. Consequently I had not even mentioned to the nursing staff at the hospital, as I should have done, my great desire to try to feed my baby. I was afraid that my mental health would be called into question too. The registrar was a nice young man, recently out of college, and a Christian. He looked at me seriously and told me that the medical decision had been made not to feed her but to let her die in peace, in hospital. He was obviously uncomfortable with this, but he seemed unable to express any personal feelings, as he was part of the team that had made that decision. Infanticide for severe disability was indeed being practiced in Birmingham.I was shocked and horrified by the registrar’s admission. It came as a complete surprise. No-one had asked us about our religious or ethical views on the subject. We hadn’t been consulted at all. Perhaps if I had been more positive she would not have been left without food. Understanding now the urgency of making a decision immediately, I thanked him for his honesty and phoned my husband, asking him to come in at once – we had some thinking to do! I cannot remember praying over this, but I think we both knew without a doubt that we could not leave her in hospital to die without food. I know I was thankful that I had read those letters to The Times so many months ago, as I didn’t usually have the time to do so, but on reflection I know that the knowledge I gained from them helped to save her life, as otherwise I would have had no reason to know that this kind of ‘care’ was happening. Generally, parents were not consulted then as they would be today. Later, this state of ignorance was to be challenged:‘Parents have a right to participate in decisions about their infants and doctors should respect this right.’ 4

But I believe that no-one, not even the family, has the right to decide to end the life of their child, even when the future might seem hopeless. Not many would want to, once they had bonded, which explained the removal of our baby to the ‘special care’ unit. One parent, writing after the death of his six-year old mentally handicapped son has written:

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‘Despite people telling us that we must be ‘relieved’, we greatly miss our son. We happened to love him despite his double incontinence and total lack of responsibility. He was another person – not us, you or anyone else... In far too many cases, doctors make melodramatic announcements of handicap to parents of a new-born baby and little more than 24 hours is often given for them to consider some horrific “non-treatment”. Far more interesting are the great advances in the treatment of handicap now being pioneered on unborn babies and the provision of better perinatal care. Those are the ways ahead, not killing handicapped babies or aborting the unborn!’5

If the right to end life without the consent of the subject were legally allowed, it wouldn’t stop with disabled infants. The demented grandparent would be next on the hit list, then the mentally subnormal, and so on. There are echoes here of the Holocaust. Life is a strange thing and only one thing is sure – nothing ever turns out as we expect it will. Good comes from the strangest and most unlikely places or the most unpromising beginnings. It is not possible to predict with any certainty the quality of life for any one individual. There can be too many variables, too many unforeseen events. All our planning can be changed irrevocably by a moment’s chance happening. Equally, when things seem blackest, solutions come from unexpected quarters. It is this unpredictability of life that makes living such fun, such a kaleidoscope of experience, a tapestry of interwoven events, each one, good and bad, depending on another for a coherent pattern. And it is not we who are the weaver, but God. An editorial appeared in the British Medical Journal when Susan was just five months old. It was depressingly negative in its description of the problems of spina bifida. ‘The prospects facing the surviving sufferer and his parents are daunting enough in childhood. When the time comes to leave school the abrupt withdrawal of many special provisions adds an unexpected burden and shows up many unrecognised handicaps. Many of the children live in extreme social isolation. Emphasis on special schools has deprived them of contact with physically able peers. Not only do they lack friends in the outside world, but they also grow up with different standards. Deprived of the normal teenage mythology about sex, they reach adulthood not only ignorant but believing an entirely different group of sexual fantasies. More seriously, they emerge totally unprepared for society’s almost universal demand for absolute urinary and faecal continence…Life in a hospital school has not given them any idea of the volume of clean linen and of disposal and laundry facilities which back up the ability of their nurses to change a wet bed.6 But what it omitted to take into account was the love that is poured out on these children by family and carers and how much love is received in return.

Lord, these reports were damaging and depressing, and there was an element of self-fulfilment about them. If we had believed these ideas then they might have become a reality in our own life. But happily we did not because we knew that the most important factor in this unhappy scenario had been excluded – Your presence, which can transform the most unhappy circumstances into joy.

We were not particularly upset though, by this editorial, because at that time we were quite unable to imagine Susan as a teenager as her life expectancy was apparently so poor. It was

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clearly written to promote wider acceptance to the increasingly popular way of managing severe spina bifida – death by ‘benign neglect’. But doctors are not in the position to play God. They can only see the immediate clinical picture and place it in the spectrum of similar clinical conditions. They do not have the insight or wisdom to add in the other factors that need to make the picture complete. The devotion and skills of parents, the amount of support and love in the extended family are all just as important.I was made aware of this about two years after Susan’s birth. I was asked by a social worker to visit a young mother in a poorer area of the city, who had just brought her very sick baby daughter from hospital. She was suffering from spina bifida and hydrocephalus, made worse by anaemia, infection of the lesion on her back and severe malnutrition. At her birth, her consultant had decided with his team that this child was severely disabled. The decision not to feed her was made, both because of the clinical condition, but also because the mother was a seventeen year old single girl in poor economic circumstances. It was felt that she would just not cope, especially with the dressings on the baby’s back. Hospital staff didn’t know, (because they had not asked), that her work in a local nursing home involved changing the dressings on the varicose ulcers of her patients. She’d had plenty of experience at caring for wounds! The baby’s grandmother visited daily and soon began to ask the nurses questions about the ‘brown medicine’ that the baby was being given (a sedative), and why the baby was not feeding. It soon dawned on the family what was happening and they took the baby home. The complications of anaemia and malnutrition had been caused by her doctors. Nine years later this baby’s grandparents moved into my practice area and they brought her to visit me. She was staying with them for a week. Her mum and dad had got married soon after she was brought back from hospital and were now running a successful business. Their ‘handicapped’ daughter was attending school full time and loved reading. Her main hobby was horse riding. She was a pretty little girl with a gorgeous smile and was adept at the use of her wheelchair, although in the garden she spent much of the time sitting and playing on the grass or in a tent with the other children. While I was recovering in hospital, I found some documents on my bed one day. I have no idea who put them there, but they were an analysis of the outcome of six spina bifida births that had occurred in the hospital in recent months. Only one baby seemed to have survived and all had been severe cases. It is indicative of the passive role that we as patients used to take a generation ago that I was too frightened to ask where the papers had come from. I thought that the consultant might have dropped them by mistake on my bed! But there was no way that I would ask questions or seem to be ‘difficult’. I am constantly amazed these days at the courage and confidence of patients not only to speak out but also to complain. It was only very much later after I had come home that I realised that someone had left the papers there deliberately, trying to give me information or alert me. Perhaps it had been the registrar feeling he told us too much, that perhaps their plan of benign neglect had been a better one than ours, to take her home to ‘wait and see.’ It was assumed by the team caring for us that the burden of bringing up a child like ours would be detrimental to our lives and that of our son, and that our child’s life would also be a burden to her. But it seemed that all the potential gifts she had been born with, and that she would be able to enjoy and to share–

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making music, painting, looking at stars, hearing birdsong, the gift of life itself – would all be taken from her if she stayed where she was.We decided we had no choice. We couldn’t agree with the policy the hospital was following and felt that we would try and make her life, however short, as comfortable and loving as possible. Armed with plenty of dressings to keep her back clean, we collected our daughter, packed our bags and went home to introduce her to Paul, her two and a half year old brother who was most excited at having a baby sister at last! Lord, I now realise on looking back that you were there right from the beginning, ensuring that Susan survived potentially hazardous situations: No amniocentesis, which would surely have revealed her disability; No further tests during pregnancy until nearly at term; Enough strength for both of us to overcome the effects of a traumatic birth; The wise and timely words of a young paediatric registrar; The random reading of a newspaper.All these interventions ensured that Susan lived, and your will prevailed.

Coming Home

‘Before I made you in your mother’s womb I chose you. Before you were born I set you apart for a special work’. Jeremiah (1:4)

Although spoken to Jeremiah, is it too farfetched to suppose that God is speaking to each of us, that each one of us has a unique task in life, planned for us, even if outwardly our skills, our potential, might seem quite inadequate in the eyes of the world? Another ‘nudge’, about considering writing this account, came on the same day that I had heard the Bible reading from Jeremiah . It was in the form of a hymn ‘Take my life and let it be, consecrated Lord to Thee’. The second verse could have been so difficult to sing, containing as it does, the words ‘Take my feet, and let them be, swift and beautiful for Thee,’ - a hopeless image for a paraplegic. But the same verse says, ‘Take my hands and let them move at the impulse of Thy love’.This was the positive, dominant thought we had as we stood by the cot and watched Susan in those first few days. This hymn reminded me so strongly of how I felt all those years before in the baby unit.

The house was full of flowers and people came to visit us. The first was my great friend and general helper, Vera, who cleaned, minded Paul, and was always there with a welcome if I arrived home first before my husband. She came in and burst into tears. She was the first person to call Susan ‘your daughter,’ a word that sounded so wonderful to me. Two elderly

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ladies came from the church, but few close friends came. Indeed, one mother of a child the same age of Paul phoned to say she would not be visiting as she didn’t want her child to come into contact with death at such a young age – she made it sound like measles!We had letters too. One, from a dear friend, and older colleague of my husband, Moira Symons, wrote with such love and encouragement:‘I just wanted to write a note to you to say I hold you in my prayers often and often every day… I don’t think I would have the courage not to be a Christian when I care about people like you and Paul and especially Susan, so deeply. To believe in prayer is to be released from helplessness. And for you I know that brings strength and the courage you both have…’At this point Susan looked far from dying. She was sleeping well and was a happy baby, crying only when hungry. Dirty nappies didn’t bother her of course, as she had no sensation below the level of her spine. She was feeding greedily, perhaps, I thought, making up for what she had not received in the hospital. But now she was taking a bottle with great enthusiasm and putting on weight very well.Many friends from our professional lives didn’t contact us, or if they did, sent cards of sympathy as if Susan had already died. I really think they were unable to face us, or our baby. A few weeks after her birth we went to a garden party and music-making afternoon at a country house owned by a consultant friend. Children were invited so we took ours. Paul joined in with other children and I left Susan in her pram, asleep close by. I felt it quite noticeable (and hurtful) that she was completely shunned. No-one went near her, or looked in her pram, as one would do quite naturally with a new baby. What were they afraid of? She looked beautiful, her pretty little face peacefully asleep.However, our neighbours and dear friends, Penny and David Franks, were most supportive and helpful from the very beginning. Penny was a nurse and understood only too well the difficulties that we were facing. She and David shared our views, thankfully, convinced that Susan’s life did have meaning even if it was going to be a short one. Later, when their own daughter Georgina was baptised at Hall Green church, we decided to share the occasion. Susan had a special blessing (having already had one christening just after she was born) and we all had a wonderful christening party. Penny agreed to be a godmother to Susan. Her other godparents were Alan and Barbara Mence, my medical partner and his wife, who were also very good friends to us.All our relatives came to the christening. Although they lived in other parts of the country they had all been to see us soon after Susan’s birth, to share in our sorrow but to offer hope and encouragement. I am only from a small family, but my brother Michael and his wife Audrey, although living over a hundred miles from us, had remained in touch and their sound common sense was a great help. My husband’s family is larger, and also spread out all over the country, but even so, they all managed to come to Birmingham again, this time to share our happiness at her church blessing more than a year later – a year that we felt was a bonus, one that we had nearly not enjoyed or experienced with her.It was hard to talk to medical colleagues at the hospital. Some, who had been involved in looking after me in my pregnancy I believe were embarrassed, as if somehow they were to blame for her condition. Why must people always look for someone to blame? It was ‘just

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nature’, ‘one of those things’. Perhaps the viral infection I had suffered in early pregnancy was to blame.Lord, You created viruses too. Why? They are almost too small to be called Life and yet their presence within us can exert the power of a laser and change our chemistry disastrously. What was your purpose in planning this form of creation?Why did you watch and do nothing when I came into contact with the person who already had the viral illness –harmless to them but so dangerous to my baby?It would be easier not to believe in your role in creation, then I wouldn’t feel I must blame you for negligence. Better to call it a ‘coincidence of unfortunate events’, a natural disaster. I need to find some answers and be able to trust you still.

I had begun to work in the medical practice in Hall Green, Birmingham four months before Susan was born. Alan Mence, a friend and fellow orchestra member, had come up to me in church one day and asked if I would like to consider joining him there as a part-time partner. His current partner, John Smout, was leaving to go to a practice in another town. It seemed unbelievable, an answer to prayer. We had bought our house just round the corner from Alan’s practice about three years before in 1974, a time when I had begun to work in a practice in King’s Heath, another part of Birmingham. We had our first child, Paul who was born early in January 1976. When he was a year old I found that I couldn’t cope with the demands of a full time busy practice and a small child, even though my husband always shared in all the domestic tasks and care of Paul. When he was only nine months old, Paul had been rushed into hospital in the night suffering from a bad attack of croup. Like all working mothers I was faced with the awful decision whether to go to work the next day or stay with my child. I decided his condition was so poor that I would remain in the hospital. It was as well that I did, as the doctors spent part of the day trying to decide whether he needed a tracheostomy (breathing tube in his neck) to aid his breathing. But my partner at the practice was furious and told me to ‘sort out the priorities’. I gave my letter of resignation within days. For a while I took a part-time post as a clinical assistant at a geriatric hospital. Paul and I would visit every day for about two hours, doing a ward round and writing up medication for about thirty elderly long-stay patients. Paul, at a year old and only just learning to walk, loved it and so did the elderly people. His unsteady steps and wicked laugh brought such joy into the rather gloomy ward, and his fascination with walking-sticks and zimmer frames brought many a smile to this love-deprived group of people. But from a medical point of view it was stifling and unchallenging work and I loved general practice and felt this was where I was meant to be. We often walked along Fox Hollies Road and I would look at the medical building with longing, but was sure that the incumbent partnership was permanent. So when I was offered the part-time post there I could have cried with happiness. But…I was pregnant. Alan and his wife Barbara were wonderful. Barbara agreed to continue to look after Paul for me on the mornings or afternoons that I was working. She had been doing this for some time, when I was working at the other practice. She also agreed to look after the new baby for me too, which was a great relief. I knew that they would both be well cared for, and be very near me. Alan and Barbara lived ‘over the shop’. Part of their house had been converted into the practice, so as well as hearing Paul

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shouting or playing from time to time we could all smell Alan’s lunch being cooked! As for being pregnant Alan saw no problem there and smilingly told me the patients would love it. How right he was!I took six weeks maternity leave following Susan’s birth, having gone to the hospital to be induced straight after a morning surgery. Back at work, over and over again friendly faces asked ‘what did you have?’ and I had to say over and over again ‘a little girl, but she has spina bifida’. This in itself was cathartic, to have to admit the awful fact frequently. But it helped to reduce the great amount of pain and sorrow that lay just short of tears. My patients were wonderful. These were real ‘Brummies’, many of whom had lived through the bombing of Birmingham in the war, younger ones still reeling from the terrible IRA pub bombings of 1974. After that, what was one disabled youngster? Their sensible encouragement kept me sane. Practical advice, knitted jackets and stuffed toys all started to flow in to the surgery and professionally I got no complaints about my work! A common opening phrase from a patient would be ‘I’m sorry to bother you with this, it’s so trivial compared to what you are going through…’ Their sensitivity was extraordinary and a bond was formed with these kind and loving people that was broken, oh, so reluctantly, when I retired in 1998 from the practice.We gradually got into a routine looking after Susan who seemed to be thriving. The large hole in her back was gradually filling in with granulation tissue, and started to form a skin over it. Within a few months it would be completely covered with a thin membrane-like skin reducing considerably the risk of meningitis. But we still felt very alone with our problem and received no help from social services. When my husband approached the Director at a City Council meeting that he was attending, he received an evasive reply, followed by a letter explaining that due to lack of funding it was not possible for every family to receive information or help from a social worker. They had not even been notified by the hospital of Susan’s birth! This was also the case with the local health clinic. No one had told the health visitor that I was out of hospital, or even about Susan’s disability. On reflection, I think it was a disadvantage to be medically trained and working locally. Everyone either assumed I had no need of help or could access the services myself. They didn’t realise that having a medical degree didn’t help in these circumstances. It was just as hard being left alone with no help and no energy to seek help as it would have been for anyone else. One friend though had an idea and suggested that there might be a self-help organisation locally. So I looked in the phone book and found ASBAH (Association for Spina Bifida and Hydrocephalus). I telephoned the number and made contact with Lettie Bellshaw, who was the local social worker for the Association. She and her husband Bill, who was also a social worker, became our close friends almost immediately. Lettie came to see Susan and was so supportive right from the beginning. However, her knowledge was considerable and the news was bleak. Our area was not good statistically for the long-term care of spina bifida patients. The specialist neurosurgeons were largely against inserting any shunts and there were several children in the area slowly succumbing to the horrendous effects of hydrocephalus. One indeed had already gone blind. Lettie and others were trying to use their influence and that of the association to stop this practice of non-action but were having little influence on the clinical decisions being made.

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Medical Help

‘Honour physicians for their services, for the Lord created them; for their gift of healing comes from the Most High…they too pray to the Lord that he will grant them success in diagnosis and healing, for the sake of preserving life’.(Ecclesiasticus 38: 1-2; 14) We were expecting to receive an appointment with a paediatric neurosurgeon to review the state of Susan’s hydrocephalus. There was no doubt her head was beginning to grow. It was not yet outside the range of normal but for her size was beginning to look unusually big. After a while we phoned the hospital. A mistake had been made and there was no appointment booked. One was given us for a few weeks time. Meanwhile, Alan, my partner at the surgery, had spoken to a mutual friend who happened to be a well-known neurosurgeon who played in the same orchestra with us. In his opinion, no shunt should be inserted, and the baby should ‘be allowed to die’. But I had seen these children in the hospital with their blindness, their pressure sores, their enormous heads…and they hadn’t died. Had we been right to bring her out of hospital? Had the hospital doctors been right after all? Would it have been better that she died in hospital and not slowly and painfully outside it? And how could we allow that deterioration to happen to our bright-eyed, chirpy little baby? Terrible doubts began to plague me. But she was alive and now we had more decisions to make.To try and work off the misery that was beginning to beset me I threw myself into work, into music and into writing. We phoned the hospital again and an appointment was found with the consultant for the next morning. With enormous relief, that evening we got both the children to bed and settled down. We even got out a bottle of whisky to have a drink – something we rarely did. About nine o’clock there was a knock on the door. We hurriedly pushed the drinks and bottle under the settee, and opened the door. Standing there was one of Birmingham’s most eminent paediatric general surgeons, Mr. Sean Corkery. I had once been a student in his team. Recoiling in amazement we invited him in and offered him a drink. His choice was whisky, which we sheepishly had to retrieve from under the chair! His opening words still remain with me: ‘I hear you have a problem.’ With that, he asked to examine Susan. We took him up to her bedroom. I tried to convince him that she had some movement in her legs but he confirmed that any movements were due to reflexes and not from true movement involving the brain. We told him our fears about hydrocephalus and without hesitation he told us he would operate on Susan and insert a shunt within the next few days. He will never know the extent of the relief that we felt when he said that!Lord, that was the worst time – when doubts grew and I could not find you. What did you want us to do? I believed you had intervened to save Susan. You were caring for her as she was developing some small skills and learning to smile. Our love for her was absolute and we couldn’t bear to consider losing her, or watch an inevitable decline into an even worse level of disability. Thank you for sending someone to help us.I recently received an encouraging letter from my friend, the social worker, Bill Bellshaw, which reminded me about the number of doctors to whom we shall always owe enormous gratitude, despite the events of the first few weeks. In it he said:

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‘… Recently I was giving a Bible talk about ‘thankfulness and gratitude’ to the women’s fellowship at our church and gave the illustration of your thankfulness to the doctors and surgeons in Birmingham at the beginning of Susan’s life and that you had written to the surgeons in gratitude 25 years later when Susan had graduated. There were thirty women present – we took Susan’s photograph to the group and she was much admired! We thought about how seemingly insurmountable problems can be overcome by the human spirit, both in relation to disability and to great achievements. On that day Susan was our inspiration. In addition to thinking about key women in the Bible – Hannah, Mary, Ruth, Esther to name but a few, we included Susan for her lovely spirit and determination…’When I first read it I was slightly bewildered. Had I really felt gratitude to the ‘doctors and surgeons’ that my friend referred to? Certainly I bore my obstetrician no malice and understood his reasons for his actions and decisions. I was less sure about the consultant paediatrician who had made the decision to allow Susan to die, and who had then told us that she had made an appointment regarding Susan’s hydrocephalus, when apparently she had not done so.Lord, I hadn’t recognised until now that I had felt anger towards that paediatrician. This has been suppressed all these years. Forgive me for this. Thank you that we found out in time that we needed to take action ourselves to make that appointment, that it was not left until it was too late.But of course, we were totally indebted to Sean Corkery for his timely intervention, and also to Mr. Tony Hockley, the consultant neurosurgeon who took over the management of Susan’s shunt after Mr. Corkery had inserted it. The indomitable Mr. Henry Piggott, (the orthopaedic consultant who everybody feared, but whom we loved), also gave us great hope and encouragement, as did his colleague at Oswestry, Mr. Rose, who even managed to get Susan up and walking for a spell in an ingenious contraption. These were the people I did indeed write to last year. I wanted to share my enormous gratitude and thanks with them and to tell them the good news of Susan’s achievement when she got her degree in forensic science. The letter from Bill was a wonderful confirmation that Susan’s story needs to be told as an encouragement to others. Lord, just as I have spent so much time trying to find a way forward in this, and indeed, whether I ought to continue to write, you send a sign as an answer to my questions and doubts - a letter from a friend. Thank you! Over the next eighteen months Susan was to have three shunt revisions, each involving a hospital stay of about four days. She had no other medical treatment because officially she was in the ‘no treatment’ category. That had been breached by Mr.Corkery’s compassion but I still felt that the general opinion was that she would die soon from her condition. We felt this so strongly that in October 1978 we celebrated her six month’s birthday in case she didn’t reach one year. But she got through her first year and then her second. Unofficially I was feeding her antibiotics as soon as I had evidence of a urine infection. Its hard being a doctor and a mother!As well as having regular hospital follow-up appointments with Sean Corkery, we were referred to Dr. Jean Clark in the Community Health Department. This formidable lady, who terrified me, was an enormous tower of strength to us. There had never been any doubt in her

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mind that Susan was going to ‘make it’. She was meticulous in her physical examination of her patient and was the co-ordinator of the various people we had to see, and clinics we had to attend. She arranged for Susan to receive physiotherapy weekly at the local health clinic. She made sure that appointments were always made with the spina bifida clinic and later, the renal clinic. But the greatest moment came when she suggested that Susan might enjoy nursery school and arranged for her to attend Bray’s Road School in Yardley, Birmingham from the age of two. This was to be such a fruitful time for Susan. Although her father had made her so many aids (like the prototype skateboard, long before they were invented, that she propelled herself around on), at school she had space, friends and wonderful teachers. She was taken and brought home by school transport, and soon began bringing back the scribbled pictures she had done. One day when she was three years old, the whole school put on a play in which Susan was a tree waving her arms around in the wind. The accompanying music for this was Grieg’s ‘Morning’, and we always think of that time when we hear that piece.Lord, thank you for the gifts you give us. Thank you for musical instruments and people who play them. Thank you for paints and brushes and white paper to cover with colour. Thank you for our voices, which can sing, or talk sympathetically to other people, or talk to you. Thank you for the opportunities that you give us to serve you every day.

Communications

‘You are the light of the world. A city that is set on a hill cannot be hidden’.( Matthew 5:14)

Lord, I hope that this account will be a light – one that illuminates the whole area of suffering and reveals, out of the greatest darkness of despair, the truth about your love and great compassion for us. Writing this is rekindling memories; my memories of all the moments when instead of despair and fear I was overwhelmed by hope and a knowledge of your love for us. It was this rediscovery of Your grace and close presence at a time of great bereavement – the mourning for normality, and the loss of freedom from worry and mental pain – that gave me courage to continue and to find out more about spina bifida and other severe physical disabilities and the management of these conditions. Telling this account is not easy. But your faithfulness to us needs to be told, to lighten the dark places in other people’s lives and illuminate the corners where hope is hiding.I found that reading, attending conferences and talking about disability helped me a great deal to come to some understanding of the practical aspects of the problem. In 1980, Francis A. Schaeffer, and Dr. C. Everett Koop who was the American Surgeon General came to hold a conference in Birmingham. Whilst denouncing abortion, it also covered the controversial debate on the non-treatment of disabled babies. Over a thousand people attended. Also on the platform for questions and debate were Edith Schaeffer, the author, and Professor Zachary, from Liverpool. I went forward to the microphone to tell them about Susan’s extraordinary experience and to ask a question. The whole conference was taped, so the questions from the

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floor were recorded, which is how I have been able to check my words. After telling the team on the platform and the audience about Susan’s medical history and present condition, I said:‘We see these as problems that I hope we’ll be able to help her to overcome. My problem is that she is still in the ‘no active treatment’ group. At the beginning we were told that she wouldn’t be given antibiotics if she developed any illness and that she’d ‘hopefully’ die as this would be kinder to her. Now, as a doctor, I can’t go along with this. For instance, I am giving her antibiotics twice a day to try and prevent her getting any kidney infections. Naturally if she gets a sore throat I give her something else to help that too. I suspect though that I am doing this against the wishes of her medical advisors. I feel in somewhat of a dilemma about it and I want to know - when does the ‘no treatment group’ become a ‘treatment group?’7

The support I received from the audience and from those on the platform was tremendous! It was so encouraging to know that some people in the world at least felt that our daughter had a right to live. After that, there was less talk of death and more planning for her future. I needed more encouragement from my church and my faith at about this time. I turned to other people’s experiences, and began to read widely. One day while I was in a local Christian bookshop I stopped to talk to one of the assistants and told him of my specific interest in physical handicap. There seemed very little positive literature on the subject that might be helpful in getting me out of the depths of misery that I was beginning to experience again. And then he directed me to Joni Eareckson’s work and I was immediately helped and uplifted by this remarkable testimony of faith. I think that the part of the book that stayed with me was when Joni, who had been seriously injured in a diving accident leaving her quadraplegic, doubly incontinent and quite helpless, decided to call on the elders of the church to take part in a healing service, exactly as described in the Bible:“Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up”. (The New Testament, James chapter 5 verse 14 The New International Version).She was sure that God would make her walk again just as Jesus had performed miracles for the paralysed. But she had to come to terms with fact that God didn’t always work in this way, and her physical condition remained unchanged. Her friend Steve challenged her despair and disappointment:‘Remember the Greek word, dunamos? From it comes dynamite and dynamo. One is explosive energy. The other is controlled, useful energy. They both mean great power. A physical healing experience would be like an explosive release of God’s energy getting you out of the chair. But staying in the chair takes power too – controlled energy flowing through you that makes it possible for you to cope…Our lives are like paintings which God is making. Often we jump off the easel, grab a brush, and want to do things ourselves. But when we do this, we only get a bad copy of the masterpiece He intended for our lives. Joni, your body, in the chair, is only the frame for God’s portrait of you. You know, people don’t go to an art gallery to admire frames. Their focus is on the quality and character of the painting’.She continued:

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‘This made sense. I could relax and not worry so much about my appearance. God was painting me in just the perfect way so I could enhance the character of Christ within. This gave a whole new perspective to the chair. Once it had been a terrible burden, a trial to me. Now I could see it as a blessing. For the first time in my paralysed life it was indeed possible for the wheelchair to be an instrument of joy in my life’.8

Steve’s analysis of the kinds of power or energy which led to the decision that from now on Joni would do her ministry from the chair with help from others, seemed to me to be the most extraordinary act of faith. As he said later – to get out of the chair would have been a nine-day’s wonder and after the headlines had been forgotten Joni would have been ‘just another minister’. But in this way, her faith would be increased by God’s power and her story would reach many more people. After hearing Steve’s eloquent interpretation of God’s will for her, Joni no longer saw herself as a chair-shaped failure, but a soul being honed by God for his service. The chair became an irrelevance instead of a barrier, and her terrible disability merely an inconvenience. She went on to become an internationally known evangelist and artist. It seems that God always answers prayer, but the reply is not always what we expect!(6.1.2015 : my goodness isn't this true!)What is a disability anyway? I have known profoundly physically ‘disabled’ people who are quite whole and healthy, but function in a different way to the majority of people. I particularly like the writer Helene Cixous’s attitude to her nearsightedness:‘I am someone who looks at things from very, very close up. Even if I have often blamed God for this, I often thank him for it. Seen through my eyes, little things are very big. Details are my kingdoms…I am someone who sees the smallest letters of the earth. Flat on my stomach in the garden I see the ants, I see each of the ants’ feet…’9

(Susan has always had perfect vision )One of the joys I have been given since Susan’s birth is the ability to live for the present. I was describing this to a Prioress whom I know, and she introduced me to the concept of the ‘sacrament of the present moment’. Here I read about mental as well as physical handicap and it was another source of help as I read and prayed for more enlightenment on the cause of handicap and its relation to God’s will:‘These simple souls find themselves discarded in some forgotten corner, like pieces of broken crockery, for which no further use can be found. Here, neglected by men, but in possession of God through their pure, steadfast and passionate, though deeply tranquil love, they make no effort of their own. They know only that they must allow themselves to be carried along in God’s hands, to serve Him in His own way. Often they will not know for what purpose, but God knows it well. The world will think them useless. Indeed, appearances favour this judgment, though the truth is that secretly, and through unknown channels these souls pour out infinite blessings on people who may never have heard of them, of whose existence they are themselves unaware’. 10

This offers an alternative, intrinsic reason for the presence of disability in our world, one that is more persuasive than the popular belief that ‘society needs handicap’ for some kind of sanctification bestowed on those who care. Altruism has its place but I am sure God does not permit handicap in order to make others feel good! It was the answer I was searching for, in finding a meaning to the reason God allows imperfection. The idea that the weak could ‘pour

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out infinite blessings’ just by existing was an attractive one. But was it fanciful? Did the author intend this concept? And then I found the following, which seemed to repeat the idea: ‘If a spiritual life is a necessity for every man, it is especially necessary for the weak and for those who cannot find human fulfillment. Even more than others they have the right to receive the truths of faith and especially a knowledge of Jesus Christ by, and in, love, fraternity, prayer and silence. Their religious life will not primarily be one of action but rather that of contemplation – that is, the life of one who welcomes Love on earth, who receives peace and radiates it and who lives a life nourished by prayer’. 11

Once again we find the concept of a soul radiating peace or blessings, simply by existing in God without any reference to the intellect.The late Alison Davis, who had spina bifida herself, reached a similar conclusion:‘The most severely handicapped people of all may seem to contribute little except their presence, but this is in itself valuable and deserves respect and understanding. We have no right to segregate those who we think need to receive more charity (love) than they seem able to give. Because what they do have to give can be profound, spectacular and essential to the development of a just, good and truly charitable society’.12

I wanted to challenge current orthodoxy in the medical world: that to be dead was better than to be disabled. In an article for a medical publication, I told the story of Susan’s birth and her subsequent improvement, but left out the details of how she nearly died. 13 I still felt unable to write about that and it was too soon to make such a thing public, because around that time, a paediatrician was about to stand trial for infanticide. He had decided that a baby with Down’s syndrome under his care had such a poor prognosis that he would be better dead. The doctor gave the baby large doses of a painkiller and the child died. My article was actually held back until after the trial as, even though the infanticide case was not mentioned in my article, and neither was Susan’s near death experience discussed, the editor felt that any discussion of neonatal handicap could perhaps jeopardise the trial and matters were still sub- judice.The main point of my article was to question the policy of what I was beginning to call “give-up-itis.” Before the birth of Susan, my own feelings towards most disabilities were, generally, fear, pity, and a strange anger that Nature (or God) could be so cruel to the victims and their families. Conditioned by the traditional hospital training, where diagnosis, treatment and cure were the usual intended sequence of events, I found some areas of general practice frustrating. So much of the work involved the care of the chronic sick. Many patients were tired of living, and the complexities of sorting out multiple pathology in the disabled and the aged seemed insurmountable, especially when you were faced in the end with the patient’s other problems of loneliness, sense of worthlessness, and poverty – material and spiritual. I suffered, as I believe many doctors do, from an attack of “give-up-it is”, a feeling that any medical action I took in a chronic case hardly made any alteration to the patient’s life and indeed could worsen it. But after a while, compensated by the more rewarding cases in general practice, I began to realise there was a lot more to medicine – and life – than diagnosis, treatment and cure. One of the rewards of general practice is the gradual awareness of extended family relationships. I remember one grand old chap of 92 who troubled me so much because I felt so sorry for him. Crippled with arthritis, blind, often confused, living alone with the help of social services, his outlook seemed awful. When one day he developed signs of a chest infection (which used to be called ‘the old man’s friend’), I felt tempted to

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withhold antibiotics with his, and one family member’s consent, and treat him at home with the help of our excellent district nurses, using only analgesics and good nursing care and just ‘wait and see’.That night in surgery, a young pregnant woman seemed upset, and when I talked to her she broke down and told me how sorry she was that her great-grandfather was so ill; he had so been looking forward to the birth of his first great-great grandchild! I had no idea that this girl was related to the old man, and it suddenly seemed very important that I should change my management of his case. With his consent and my explanation of why the treatment plan had changed we started antibiotics and, after a few rough days, he pulled through, to be rewarded later by the birth of his first great-great-grand-daughter whom he adored. He died in his sleep six months later. After that, my ‘give-up-itis’ went into remission.I think that too many hospital doctors are infected with this complaint. Perhaps from their experience they feel that the handicapped babies in their care are destined for a far from perfect life and would be better if helped out of this world. But why stop at handicap? If one interpreted the guidelines strictly, all children who might grow up to be unemployed, poor, friendless or smelly (the negative aspects of a handicapped existence recited by one consultant) would be at risk! Racial, sexual, or class eugenics are no longer with us thankfully, but the political expediency of ‘scrap and replace’ when dealing with handicap and abortion is now well and truly here.In April 1981, BRMB, a local radio station in Birmingham, took the initial step of doing a massive fundraising project and decided on ASBAH to be the recipient. The ‘Susan and Friends Appeal’ was unexpected and quite a challenge. Susan was settling into her nursery and we had no desire to turn her into celebrity. But the Spina Bifida Association had been so good to us, that when one of their officers approached us and asked if Susan could be on one of the posters that they were using for a fund-raising event, we rather grudgingly agreed as long as that was all that it entailed. Several local celebrities backed this, including Ed Doolan, who ran a daily show and wrote regularly for the Evening Mail. The method for raising money was traditional, involving an envelope scheme. The organisation was incredible. Every street in the West Midlands was targeted, and one person from each street, road, avenue, crescent or boulevard was responsible for keeping the envelopes for that one area and delivering them. Each area volunteer had phoned in to offer their help, and so their name and their street was announced each day on the radio. Each day the tension mounted as the streets were read out, district by district, the slower ones being chivvied, the enthusiastic ones being applauded. Each collector was named on air and many were interviewed so nearly all streets eventually were represented and named. Every day for several weeks the event was discussed on air, or in the paper, and personalities involved in it were interviewed.But the real attraction was that the envelopes were to be returned, not to the collectors, but put in large containers in the city centre on one particular morning. On April 11 th 1981, a large platform was erected in Chamberlain Square in the centre of Birmingham, and many celebrities came to wish the Appeal good luck. Some of these included the cast of Crossroads, the Warwickshire cricket team, the Aston Villa team, and many others.Soft toys, handmade portraits of Susan taken from the advertising posters, letters of support, all started to be delivered in the surgery, mostly I imagine from the patients, but some from people we didn’t know – lovely people from Birmingham. We had tried to keep it low key for

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Susan, but the organisers pleaded that she should be there too, and so she was. She was on the stage for only a few minutes. The huge crowd cheered and waved and she gave a tiny wave back but was nearly in tears. She had a headache and had just been sick – not from excitement but from a shunt complication that had only started that morning. But she recovered quite quickly and we were ready to move on to some other exciting things in our life.I was phoned by the BBC out of the blue one day in 1982, and asked if I would appear on Newsnight on BBC 2 that evening. The debate was to be between me and another doctor who advocated positive action in hastening death in the abnormal neonate. My first reaction was to recoil in horror from such a prospect. I have never enjoyed the limelight and felt I was unprepared and psychologically unsuited to this task thrust upon me. But I was given encouragement and strength and agreed to be there. The secretary on the line told me that ‘nothing was certain’ yet and they would confirm the time later in the day. As the day rolled on, I became progressively uncertain about what I was about to do. There was no doubt in my mind about the certainty of the moral arguments I was planning to use, and I knew deep in my heart that this is what God wanted me to do, to speak out on behalf of all those who were too young and frail to speak for themselves. But God has never answered my prayer for relief from symptoms of anxiety! As I have become older He has taught me to recognise them for what they are and try to live through any experience that is provoking this autonomic response, but he has never given me an anodyne to remove the fear. So on this occasion, like many others, I put up with the dry mouth, palpitations and frequent trips to the loo and waited for the phone call confirming that the programme was to go on.We had planned that evening to go into Birmingham to hear Shirley Williams M.P. speak at a political dinner. My husband was personally invited and had to attend, and as I too had had an invitation, and nothing more had been heard from the BBC, we decided we had both better go to the dinner as planned. At 9.45 p.m. a message was passed to me asking me to get a taxi ‘immediately’ and get to Pebble Mill studios, ASAP! By this time Shirley Williams was in the middle of her talk and it was with great embarrassment that I left the top table, grabbed my coat and set out to find a taxi. The show was to go out at 10.20 p.m. I got to the studios, was asked to run to the other end of the building, and fell into a seat as someone fixed a microphone to my head. The camera was running and introductions were being made. I couldn’t even say ‘good evening’ as I was so out of breath, but smiled weakly. Luckily, the programme then dealt with another issue for about 15 minutes before returning to our debate by which time I had recovered a certain amount of composure! I felt so sorry for the producer having to work to such close deadlines. I later wrote to Dame Shirley Williams apologising for having to leave her in the middle of the speech. Her reply was typically gracious:‘…I did actually recently speak in a debate in the House of Commons on the issue of handicapped children being deprived of life and I very much share your view which must be confirmed by having such a charming and attractive daughter. Please do not worry about the ‘disturbance’. I didn’t even notice it and was very glad to be able to attend such an agreeable meeting as the one that we had in Birmingham…’14

The TV debate was a success and once I had started to speak my nerves left me and the issues discussed became the only focus that I had. The other speaker took as his example the

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case of a man with Down’s syndrome whose parents died when he was in his twenties, and who then had no-one but the State to care for him. He claimed that this afflicted individual would have been better off dead than to face this hardship. I was extremely incensed by this argument, and probably showed it! Luckily, so were many members of the public who wrote to the BBC in protest at his point of view. Some wrote to me too. In a handwritten note, one said:Dear Dr. Gray,My husband and I have just watched ‘Newsnight’ on T.V. and feel moved to write a few lines to you to say ‘thank you’ for the stand you are taking in defence of the lives of handicapped babies. We both said ‘thank God for people like her’. We admired you so much for the way you were so pleasant and unruffled (!) in putting forward your point of view, and we agree wholeheartedly with what you have to say…’ 15

It confirmed my opinion one again that ‘ordinary’ British people were kind, full of common sense and loved fair play. They could see the unfairness of the starvation policy. Active euthanasia, that is, actively doing something to end a life, such as suffocation, poisoning and other such things, was illegal. But passive euthanasia, like the withholding of medicine or worse, of food, was somehow considered by some professionals or academics to be morally acceptable. But to most people I suspect, the withholding of food, which would automatically bring death in due course, was plainly wrong. The child had no choice and death was inevitable. That was not natural. All life needs food and water, and this had been our argument when we brought Susan home from hospital. Witholding synthetic modern medicines was more acceptable – it was only in the last half a century that they had been available anyway. But to ‘play God’ and interfere with the natural process of nourishment in young babies was thought, and still is by most people, to be unacceptable. ‘Your will be done’ is said daily by all Christians. So we had put Susan’s life in His hands by only providing the most natural of care – her “daily bread”- her food and water. She had been placed in the ‘no treatment’ category, but we had interpreted ‘treatment’ as medical intervention, not withholding feeding.Thank you, for the many people who have touched our lives and supported us by their prayers. Many of my patients, many of those who watched Newsnight, and all those who supported the Susan and Friends Appeal I remember with such gratitude and love. These are the people who loved, listened and cared. Many thanked you for Susan with me. Many prayed for her in their churches. So many sent toys and money to the appeal out of small pay packets. In 1983 was asked to give a talk to the AGM of the Catholic Doctors of Great Britain. It was five years to the day that Susan had been born in the hospital just across the road from where the meeting was being held. The weighty subject was ‘Christ in the Handicapped’, and I was terrified! No theologian, I was a general practitioner with a disabled daughter. I could only talk about Susan’s birth and the events that were shaping our lives at home and how this was underpinning my faith in a number of ways. I told them of a conversation Susan and I had had a few nights previously:Susan: Is Jesus everywhere? Is he in my teeth? Is he in my eyes? Etc.Me: Yes, his spirit is everywhere. He once was a man but now He’s in heaven, which is all about us, if only we could see it.

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Susan: Is He in my hands?Me: Yes, He wants your hands to work for Him now as He is a spirit - so your hands must be His hands.Susan (In a matter-of –fact voice): Well, He wouldn’t want my legs- they don’t work!Me: He has plenty of other peoples’ legs to walk places for Him. It’s your hands He wants to use – you can paint for Him, write for Him, play music for Him, heal people for Him… and then I was suddenly overwhelmed by the same feelings I had had in that baby unit five years ago. Her hands are beautiful, and they work perfectly.Thank you for books and for authors – those people who can communicate ideas and descriptions of things and who have such success in influencing us and giving us peace through communication of knowledge that leads to understanding.Thank you too for the poets and painters who keep our souls alive, our spirits uplifted and whole and who keep hope alive in our hearts.

Moving On ‘And we know that in all things God works for the good of those who love him, who have been called according to his purpose’ (Romans 8:28)

We had always thought we would like to have three children, but Susan’s birth made us unsure of what we should do. Statistically, once a family has had one baby with spina bifida the risk that subsequent pregnancies might also suffer a neural tube defect rises to 20%. We felt that the odds were too great. If we were to try again for another baby, there was a strong likelihood that he or she would be affected. We would certainly, after knowing Susan, be quite unable to consider termination of an affected foetus, but equally the strain of looking after two babies with complications we thought would overwhelm us. We decided that we would adopt our third child. Because of the likelihood that Susan’s life would be short, we felt we should ask for a baby boy about two years younger than Paul, who would grow up with him.

We had to wait such a long time, going through many rigorous tests about our suitability as a family to take on another baby. When it seemed that we were never to be contacted by Social Services, later in 1981 we were eventually approached, and asked if we would consider accepting a 10 week old mixed-race baby boy. This came as a great, but welcome, shock. We were expecting a three year old toddler so had got rid of all our baby clothes, the pram and all the paraphernalia apparently needed for the care of a young baby. Susan was in hospital having an operation on her hips. I had actually said to a friend that I was sure that the baby would come as soon as we had fixed Susan’s operation date! We had postponed it for a time in anticipation of a possible child’s arrival.We went to see our new son who was absolutely gorgeous! No doubt about it – he was ours from the first minute we saw him. He was quite light in skin tone, and Susan and Paul who had been prepared carefully to expect different racial features took one look at him and wailed ‘but he’s not black!’

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(I think we were one of the last white families in Birmingham to be offered a mixed-race child. Political correctness later dictated a different policy, leaving many children permanently in care and not adopted, for lack of “suitable” homes).The first few weeks of caring for David had to be carefully orchestrated. Susan, in a waist- to- toes plaster cast came out of hospital on a special trolley that we were unable to keep, so we had to find a large pram that would allow her to lie full length so that she could go out. We bought a conventional baby buggy for David, but each time we went out we needed two adults to push the prams! Also, because David was an adopted baby, I did not qualify for any maternity leave. (I believe the law has now been changed to alter that anomaly). At this time we had a full-time baby-sitter/housekeeper, Mary Collett. She had been looking after other people’s children in her own home for some years, as well as bringing up her own four daughters, and we thoroughly trusted her. She only lived a few minutes away and was a friend of the family. We found it easier to get someone to stay in the house with the children rather than get them ready in the morning and take them elsewhere. This meant that if they were ever sick or if school was closed they would be able to stay at home in their own environment, and with their own toys and be cared for very well indeed. It also meant that I sometimes found the ironing done and dinner ready when I got home! Mary was ready and willing to help me care for the 10 week old baby. I was only working five half-days a week so had a lot of time at home to bond with David. We couldn’t go out because of the transport problem.

David arrived already suffering from a wheezy chest and was taking antibiotics for bronchitis. That first night I was too afraid to go to bed, and stayed awake downstairs in the warm room next to his pram where he was sleeping. He really was a beautiful baby, with an olive skin and curly hair. He looked just like a little Italian cherub! He was also a ‘good’ baby, fed well, slept when appropriate and smiled engagingly at all who talked to him. By coincidence, his pre-adoption check-up was done by Dr. Jean Clark, the same paediatrician who was supervising Susan’s care. She had no idea that his new home was to be ours and she seemed pleased at that news.Although we had supposed that David would take his place as the younger brother in a family eventually of only two children, this was not to be the case. Paul and he got on very well as brothers, but the age difference meant that they had little in common except for their schooling – all three children attended the same schools together from the age of four to sixteen years. On the other hand, a great bond began to form between David and Susan. David became fascinated by her wheelchair and was perceptive in his care of her. From an early age we would hear him cry: ‘Sue can’t go up there. Look at all those steps!’ And Susan in turn, whilst adoring her older brother, found this new little one a constant source of amusement, one who allowed her to be ‘bossy’ but hardly ever complained! David was a real gift to us.As a mixed-race youth, he was often stopped and searched routinely by the police, even being accused of breaking and entering into his own home. This gave us insight into the reason for so much hostility towards the police by this group of young people. Much later, when as a teenager he became entangled with the law and was charged for an offence he didn’t do, we as a family found even more evidence of our solidarity and bonding. Through the months of

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anxiety for him, our natural fear and dislike of any involvement with the police or the courts grew, as did our terror that his story would not be accepted. But I was aware that somewhere, somehow, as Julian of Norwich said:“All shall be well, and all shall be well, and all manner of things shall be well”.A witness came forward unexpectedly, confirming that David was not involved and so he was acquitted. Then even more surprisingly, another lad owned up to the offence and pleaded guilty. I was so moved by this young man’s honesty that I contacted him in prison and wrote to him weekly, sending him books about cars that he loved. We kept in touch with him and were delighted that the training that he received during his three year sentence at a young offenders institute, enabled him to find work as an electrician, giving him self-confidence and maturity. Meanwhile, was it a coincidence that after this nightmare, the family seemed to gravitate towards more involvement with the law? Paul, our eldest son, took a post-graduate degree in law and became a lawyer, I left general practice to be a police surgeon, and Susan became attracted to forensic studies. (David, understandably chose to keep away from all that and has always worked in the building trade). This seemed to be such a positive outcome from such a terribly worrying time – and I never expected that my prayer for peace and freedom from worry would be answered in such a remarkable way!

‘You of little faith, why are you so afraid?’(Matthew 8:26)

I have already mentioned how I have been unable to understand why my symptoms of stress and anxiety mainly associated with occasions like waiting for Susan to come back from the operating theatre, have never disappeared. David’s problems provoked a great deal of such anxiety, but I found that by reading or thinking this text I could relax.

‘Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid’. (John 14: 27)

Lord, You know those times when I feel sick with worry; when a sense of foreboding darkens all my thoughts and invalidates all good things around me; when life seems to have no purpose or direction, and you seem so very far away, beyond the horizon, walking away..Or when people near to me try to convince me that you are merely a figment of my imagination or a wish-fulfillment of my own making. You know these nightmares, you know the pain, you also have felt deserted and alone. Do not judge me for my lack of faith in those dark times, but illuminate my darkness and my fears.When Susan was about four years old her neurosurgeon, who was now Mr Tony Hockley, suggested that we should consult an educational psychologist, in order to assess her mental ability. Mr Hockley wanted a base line so that he could monitor her ‘decline’ as he put it, should she have any more shunt problems. Her vision was (and still is) perfect with no need for spectacles. Her hearing was also good. Her memory seemed reasonable and she was doing well at school but we took his advice and got tests done. The results were strange. Her verbal

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and reasoning skills seemed very good and the psychiatrist assessed her IQ as being very much above average. We found this incredible, given the amount of apparent trauma experienced at birth and during the brain surgery for her shunt. Her numeracy was not as good and she continued to have some difficulty in that direction. But generally speaking she was enjoying school and had a lot of friends. On her fifth birthday, some of these friends were going up and down in her lift and others were admiring her specially adapted washbasin in her bedroom when one said: ‘Gosh, Sue, you are lucky. I wish I was you!’ Oh, that children with their unbiased sense of priorities needn’t become cynical, disillusioned adults!I was asked to campaign with various groups in a more specific, politically focused way. Until then I had been questioning clinical practices and writing and talking about disability to various groups of people. But it seemed to me that to become aggressive, to consider litigation (which one group suggested) would only negate all the good that I felt Susan’s birth had achieved in proving that it is impossible to make quality of life judgments on the very young disabled child. It would have been against my nature and certainly would have been counter-productive to become, for example, an agitator for ‘rights’. I really dislike confrontational situations and by nature I am not a campaigner, so I ignored the various appeals to engage in these kinds of activities. Susan as she got older, became very similar and dislikes fuss or anger, treating difficulties with a sanguine approach.

When I spoke at meetings, I tried to emphasise the positive aspects of her life and the hope we had for her life, however long or short that might be. I preferred to try and get the message across in a more diplomatic and loving way, telling Susan’s story as a real message of hope, an example of God’s love for us. In any case, looking after a practice, three children, Prince, the border shepherd dog that arrived in 1984, and a long-suffering, lovely husband was as much as I wanted, or was able, to do. But I did make one visit to the House of Commons in the company of the M.P. Norman St. John Stevas (as he then was), and members of an organization called “Doctors who Respect Human Life.” The Press gave our meeting good coverage and Susan’s story reached the national newspapers, who made much of the story that doctors could not always be the best judges of ‘meaningful life’.

We had decided that we wanted our children to grow up in a loving, Christian household. All three had been christened as babies and every week we went to the Church of the Ascension, Hall Green to the Family Service. During the service the children would go into the church hall for their own teaching from very caring and enthusiastic members of the church who had been trained for this important ministry. They also had morning assemblies at their schools which, during the infant and junior days at least, were Christian in content. Later their comprehensive school, which was multicultural, chose to give a morning address of a moral or ethical character without a specific reference to God. But as I felt they had had a good grounding in the Bible and in the basic tenets of our faith both from their schools, church and of course, their home, I was not too unhappy that during their later school years they missed this from their daily life at school. I was particularly pleased that the school had such a number of ethnically diverse students, as I believe it taught our children tolerance and respect for others. The school was also the designated school in the area for teaching children

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with disabilities. These ‘special-needs’ children were entirely integrated and popular, and the whole school benefited from their attendance, although Susan didn’t like the collective name.Some of my professional friends were charismatic Christians. I was still on the fringes, as it were, belonging to a warm and caring church with a more traditional kind of ministry. In 1984 when Susan was six, I took the three children to an Anglican retreat and holiday centre in Devon for a few days. (My husband stayed home to continue his work and to look after the new puppy!). Our time at that remarkable place was fascinating. I found it extraordinarily peaceful and spirit-filled, and there were lots of activities for the children. But one experience was uncomfortable. One day, during a prayer session, at which Susan had chosen to come, a group of people, without warning, descended on her, laid hands on her head and began praying fervently, one eventually breaking into tongues. Sue looked up, gave me a quizzical grin and whispered “what are they doing?” I said, ‘shush’ or some such off the cuff uncomfortable remark and eventually they stopped and went back to their seats. I later thanked them for their concern but didn’t tell them that my feelings of gratitude were weakened by the disquiet I had experienced, that such a thing could have happened without preparation or warning, and especially without any request for prayer.

Looking back on this later with some anger, I realised that to me at least it had felt intrusive and embarrassing. They had had no right to impose themselves on my daughter in this way, so that they frightened her. It was an invasion of her privacy and her self-respect. They prayed that she would be “changed” i.e. that she would become more like them – and I don’t mean more spiritual! They prayed she would get up and walk. After we left the room, I told Susan that they were praying for her to get better.“But I’m not ill!” she declared. For Susan, to be ‘chair-shaped’ was exactly how she felt she was meant to be – she had never been anything else, and was content.Susan has taught me that disabled people have their own agenda for life, their own self-image as do all people. Why do others feel they must interfere? It is so patronising. Alison Davis put it well:‘To put it another way, which is perhaps clearer, I must first accept that this is me as God made me and intended me to be, before I can claim to be a whole equal person, and educate other people to regard me as such. This is difficult because handicapped people are all the time fighting against the prejudice of those who consider themselves ‘normal’ and us ‘abnormal’. But they are not necessarily right just because they are in the majority’. 16

Several years after our experience at the Devon retreat, we went with another friend to a local church held in a school hall, which was very popular. It was not the fault of the members, but I found it embarrassing for Susan who was sitting near the front listening intently, as a cheerful couple came forward with their new baby to give a testimony, which included many prayers and thanks for the baby’s normality. We didn’t go back there either. In both these cases, good, well-meaning Christians showed a lack of sensitivity which was painful to both of us.During the 1980’s health professionals and clergy in our part of Birmingham joined together regularly at our home, to pray for our work. We were part of an organization called Caring Professions Concerned. We often prayed for Susan’s wellbeing, particularly when she was

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sick (which was not often); but not in her presence. I believe that those regular prayers kept both of us safe and well.Lord, I have never told anyone, apart from the family, about these things. It seemed ungracious to complain, as what happened was not the fault of the lovely people who were running the centres at that time. But I realise that I still feel anger at cheerful Christians who tread on toes. If I am one, then please change me immediately! And teach me to be more tolerant of other’s faults when they don’t live up to my expectations of them.

Growing Up

‘The foolishness of God is wiser than man’s wisdom, and the weakness of God is stronger than man’s strength.’(1 Cor. 1: 25) Many statements, published at about that time by scientists, clinicians and journalists predicting the poor quality of life of the disabled child, were alarmist and untrue. If one had been influenced by the dire predictions forecast in these negative reports, life would have been so different. But in fact, we tended not to read them until much later and avoided thinking about what ‘might happen’, and tried to focus on the good things that were happening at the time, and it was only in retrospect that we realised how damaging they might have been for us as a family. ‘Return home for long holidays from school, or at the end of school life can be cruelly disenchanting for a teenager planning to cope alone, or an impossible burden for an ordinary household. Add to this a high proportion of broken marriages among parents and the effects of handicap on normal siblings, and a high rate of rejection from the family is to be expected.’ 17

Susan’s activities followed the same pattern as that of any other girl growing up at the end of the twentieth century. She went to school and church, and to Brownies, and had friends home for tea. She learned to play the flute and her first ‘public’ performance was at a Brownie concert where she self-consciously played the theme from ‘The Snowman’, quite beautifully. Soon after, she went to camp with the Pack and joined in all the activities that her friends did, including getting lost in the woods! Over the years, we would have music sessions in the evening, playing duets, when I would accompany her on the piano, or trios when Paul joined us with his clarinet, or quartets when David added the rhythm section with his drums. We stayed together. (Dad would probably have been getting on with the washing-up - he's like that - practical, supportive and always caring). ‘The worst cases…suffer severe paralysis in the legs so that they will never be able to walk’.18

That was true, of course. But alternatives to walking were found. One day, when she was about nine years old, she had a phone call from the Rover car company. Each year the workers clubbed together to give money to charity and their favourite one was to supply electric wheelchairs to disabled children. That year there were two chairs available – would Susan like one? If they could only have seen the look on her face after that phone call! She was totally thrilled at the prospect as she had never owned one. She had had a small electric car that was really a toy and went on the pavement quite slowly, but this was getting

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unreliable and several times she had been left stranded on her way down the road to the shops. To actually own a good electric wheelchair opened up all sorts of possibilities. She began a year or two later going into the city centre on the train, in the company of one or two friends. She enjoyed wandering round the shops as most older children do, and to be able to go independently into stores to choose her own clothes. She might have managed this with a manual chair as she had done in the past, but her range was much greater and she didn’t tire so easily, in the electric wheelchair. Thank you, Rover workers! Thank you for all the equipment and aids now available that make life easier for those who cannot walk. Thank you for the kindness of people who have the perception to understand how much their intervention means to those who depend on such equipment and their generosity in providing it.

‘The grossly handicapped spina bifida child and adult makes large demands on the health and social services. The cost of these demands exceed the cost of a programme to detect the condition (in time for abortion)’. 19

By the age of eleven Susan needed a shunt revision, and remained in hospital for three days. This made her fourth visit to hospital for her shunt and her seventh operation in all, as she had had a couple of procedures on her feet and hips. These orthopaedic operations were, of course, pain-free, as she has no sensation in her legs. The total number of days in hospital to that time was twenty eight. She had attended outpatients occasionally and had some dental treatment like all children. Thank you, that Susan only had short spells in hospital. My greatest fear, that she might develop a serious shunt infection and have to remain in hospital for many months, never happened. Thank you for the nursing staff who looked after her when she did stay there and their kindness and friendship. Thank you too for physiotherapists, social workers and all who work to make the life of a disabled person less difficult.

‘The cost of modern medicine, direct and indirect, has risen so high that it threatens to be more of a curse than a blessing. We cannot hope to escape from the trap we have created unless we call upon doctors courageously to take decisions mercifully to minimise the survival of scarcely human wrecks22… Doctors…should not opt out of the difficult decisions they should make. Let matters slide, then so let pathetic parodies of humanity continue to exist, however little they may expect to gain from life, however much they cost to others, however much they may be exposed to suffering, bitterness, frustration, dependency, endless hospitalisation, sickness and surgery.’ 20

Our child, who had been identified as one of the most seriously disabled at birth would, in the eyes of the medical profession, have filled the terrible description quoted above. Instead, she was busy moving up to the Girl Guides. But she soon lost interest in this organization, and instead became interested in theatre and films, especially those about the female detectives, Cagney and Lacey! At school she absorbed English literature and music. I remember driving with her one day to Gloucester where we were going to meet someone who was to make her some jeans. Susan found that finding trousers off the peg was difficult and we were glad to make this contact even though the dressmaker lived 100 miles away! During the whole of the

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journey we discussed the War Poets – a part of the syllabus for GCSE, and I found that my tears meant that I could barely drive the car as she read some of the verses of Wilfred Owen. (I had a similar experience recently when trying to play the double bass in a performance of Benjamin Britten’s War Requiem – the tears would just not stop coming, making the difficult score even more impenetrable.) GCSE results ranged from an A to a G, showing the great variability in her skills. Music was her best subject. She had composed several original pieces as part of her course and these were obviously liked by the examiner. She has always loved music. A year earlier, she had been accepted for her work experience by the management of the Symphony Hall in Birmingham. She was to show concert-goers to their seats, sell programmes and fetch the manager his lunch from McDonald’s! The environment was ideal – all on the same level or with good lifts, and disabled toilets easily available. She was able to attend all the concerts performed there and she met Sir Simon Rattle, which she felt was a real privilege.‘A’levels were a bit of a disaster, so the plans to go straight to University went on hold. Susan found work at the main office of the Benefits Agency in Birmingham, about five miles from home, and for two years went there daily with breaks only for holidays. To get there she had to get into her adapted car by swinging across from her chair, since she is quite unable to stand. Then she had to laboriously take the chair to bits, putting the wheels over on to the back seat and folding the chair down to swing it across in front of her to rest on the passenger seat – a task that took several minutes and was most uncomfortable in the cold or rain. This had to be repeated on arrival at work, and then the whole manoeuvre twice when it was time to go home. She took no sick leave for the two years that she worked there.

Thank you, that Susan survived, despite many perils, in order to have the privilege of being bored at work, like so many others! And to know the fun of social life, the discomfort of rain on her neck, and sun in her eyes, and cold hands – the ordinary things of life that we grumble about and take for granted but that she might never have known.

‘If you come to the conclusion that a baby is so severely handicapped that its quality of life will fail, then that baby should not be helped to survive. This means that he is going to be kept comfortable, but will not be fed milk but only water.’ 21

Although I never told her this, I think if it had been me, I would have chosen to have a cold or something occasionally, just to have the luxury of avoiding that journey on particularly bad days. But Susan is stubborn and loves a challenge, and never missed a day’s work. She disliked the work there – so repetitive and boring – but loved the social life especially when she and her friends all went to the pub after work. One of her best friends, Russell, was another film fan and wrote for television in his spare time when not working for the Government, so they had a lot to talk about. He encouraged her to take up further education so she enrolled at Redditch College to study theatrical make-up and photography. She obtained her diploma.As a teenager she loved going out and about, and with the school she visited Disneyland in Paris, and other holidays. She loved sport, perhaps influenced by Paul’s enthusiasms (he played international hockey as a teenager), and the many outdoor activities that she tried included abseiling, (wheelchair and all), sailing, swimming, horse-riding and gliding. (She

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had at one time considered wheelchair basketball but it was lethal!). In 1996, she had a wonderful surprise. She had just joined a tennis club and was playing wheelchair tennis most weekends. This is just like ordinary tennis but the rules allow the ball to bounce twice. Unknown to us, the National Wheelchair Tennis Association had put every member’s name into a ballot for seats at the Finals at Wimbledon – and Susan’s name came up! We had a great day out in London and watched the 1996 Ladies’ singles final from seats right at the side of the court.

Thank you, for exercise and sport, for good lungs to capture the oxygen-laden air and strong hearts that pump that oxygen around our bodies to our muscles and bones. Thank you for arms that swing racquets, eyes that scan horizons, ears that pick up the sound of the bouncing ball.

“We will let the weak perish. This is our philanthropy. The greatest vice against the weak is the active sympathy of Christianity”. 22

Still not satisfied with her level of academic achievement she felt she could do more. Most of her old school friends who had also flunked first time round, had gone back to repeat their ‘A’levels while Susan was working, and they were now at University. Paul had just graduated and was moving on and I think she wanted to accept this challenge too. She decided to leave the Midlands, and go away to complete an access course that eventually led her into University and a degree in forensic science.Unknown at the time, the way forward for this great chance for Susan had already been prepared. Without specialist care and accommodation she would have been unable to leave home, as there were very few colleges or universities with suitable facilities. In 1989, I had been asked by the British Medical Journal to review a most moving book by Professor Margaret Spufford, called ‘Celebration,’ which was about her own history of pain and disability, and that of her disabled daughter, Bridget. At that time she was planning to build a hostel in Cambridge for disabled students, who would be able to attend any of the institutes of further education in that city. Over the years this vision materialised, and it was because of our knowledge of the excellent project that had been named after Professor Spufford’s daughter, that in 1999 Sue was able to leave home and follow her chosen career. We little thought in 1989 that it would ever have been possible. She spent four happy years at Cambridge, made lasting and deep friendships there and is now earning her living. She drives a normal car, adapted to her needs with a roof-rack for the wheelchair and a driver’s seat that is more adjustable, and goes on holiday most years to Portugal with her close friend and partner, with whom she lives. Her health seems excellent, but really this is no longer part of my business, and I am actually redundant! Although I loved the task which we, as a family, had willingly undertaken, our greatest reward now is to know that our deepest wishes have been honoured and our greatest fears have never materialized.‘Praise and glory and wisdom and thanks and honour and power and strength be to our God for ever and ever. Amen!’ (Revelation: 7: 12)Conclusion

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‘But as for me, it is good to be near God’(Psalm 73:28)

Society’s attitudes to the disabled are more ambivalent today than ever before. On the one hand the Welfare State provides financial assistance for mobility and care, a free health service, and sometimes good institutional care. On the other hand, ‘mercy killing’ occurs, with the doctrine that ‘love is to care enough to kill.’ As Christians, we do not fear death but we also affirm that life is good and with purpose for every soul. We must relieve suffering and find ways to transform the lives of our patients so they can be fulfilled – putting them to death is not the solution, unless it is their specific will and a decision that has been made by them only, and rationally.What doctors do not consider when reaching their decision to end life, is the imponderable – the spiritual life force that transcends the physical and the mental and draws strength from just belonging to the Universe. They also do not recognise the significance of hope and of change, and of the rightful inheritance of everyone to have a place in the sun. Our differences and our diversity are reasons for celebration, not for shame, or fear, or the desire for conformity. Our differences he gives us as gifts. By using them, we can prepare ourselves for a life of service for God and our fellow humans - the fulfillment of our commitment to the two greatest commandments. I believe now that he does not necessarily intervene in the ways of earthly human existence in a physical sense, except in rare cases, where there may indeed be a dramatic miracle. Instead, he meets us where we are, and, if we allow him, will transform us into his people with enormous potential, recognising our need to live, turning our faces towards his light and love. ‘He said not: ‘Thou shall not be tempted; thou shalt not be troubled; thou shalt not be distressed’, but he said: ‘Thou shalt not be overcome’. 23

As I complete this, I am watching an advertisement for the Paralympics which are about to be held in London. It gives me great happiness to see the various athletes, despite perhaps minus a leg, or using wheelchairs, disabled by birth or by tragic life events being able to find equality at last. They symbolize for me what I have been trying, sometimes inarticulately, to say about the fact of disability and society’s response. I think as a society we are improving, moving forward, being more flexible in our attitudes towards each other, be it in attitudes towards race, gender, sexual orientation or disability. But the problem of how to look after severely disabled babies continues. I am at the end of my journey and I’ve done all the thinking I can on this subject. It has taken a long time and sometimes been painful. But my conclusion must be that we all belong to God. He accepts us and loves us, just as we are, just as we were formed, or in the way that we become, through age, injury or sickness. And whoever we are, wherever we are, and however we are, we have the hope that in time and through faith, we shall know Him as well as He knows us.

POSTSCRIPT - IN MEMORIUMJANUARY 1ST 2015

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Susan died on December 18th 2014. All our presents for her were in a bag by the window at her home in Meldreth. Perhaps she

had bought gifts for us - she always did. But none of us - from France, BirminghamBut none of us - from France, Birmingham, Wrexham, Buckinghamshire, Cambridge, and of course her dearest friends and family in Meldreth and surrounding villages, and all her colleagues and friends from the Papworth Trust where she worked, have any desire to recognise the season as anything other than the blackest month ever - the day we all lost Sue.

The cause of death was ultimately due to the lifelong condition of hydrocephalus, which seemed over the years to have lost its significance as a possible danger.

She died as she had lived, hoping and trusting that all would be well. And I believe that her hope and trust has been honored and fulfilled by God, in a way that as yet we cannot understand.Sue - we miss you so much. God bless you.

NOTES1.Julian of Norwich: from “Revelations of Divine Love” quoted in ‘A cloud of Witnesses’. Collins Liturgical Publications, London, 19822.Rick Warren: ‘The Purpose-Driven Life’. Zondervan, Michigan, 2002.3.Francis A. Schaeffer and Dr. Everett Koop: ‘Whatever Happened to the Human Race?’ Marshall, Morgan and Scott, London. 1980.

4. Campbell, A.G.M., Cusine, D.J., et al., Journal of Medical Ethics (1981) 7, 3-4 5. Robin Hassall: letter to The Guardian, April, 1983.

6. Editorial, British Medical Journal, September, 1978.7. This is recorded on a tape that was made at the conference that coincided with the publication of ‘Whatever Happened to the Human Race?’(see part 1, note 3)8. Joni Eareckson: ‘Joni’.Pickering and Inglis, London, 1978.9. Helene Cixous: “The Last Painting, or The Portrait of God”, in ‘The Continental Aesthetics Reader’, ed. Clive Cazeaux, Routledge, London, 2000.10. Jean-Pierre de Caussade, tr. Kitty Muggeridge: ‘The Sacrament of the Present Moment’, William Collins Sons & Co, Glasgow, 1981 11. Jean Vanier: ‘Eruption of Hope’. Griffin House, Toronto, 1971.12. Alison Davis: ‘From Where I Sit’. Triangle SPCK, London, 1989.13. J.Gray: World Medicine, February 1982.14. Personal Communication from Shirley Williams M.P. (now Baroness) House of Commons, 20th April 1982.15. Personal communication from Margaret Begley, Altringham, Cheshire, March 26th, 1982.16. Alison Davis. Ibid.

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17. Professor John Lorber, describing the criteria that a baby with spina bifida should display to be placed in the fifth category of degrees of disability – the ‘no treatment’ category.18. Lorber: Ibid.19. DHSS pamphlet: Prevention and Health: Everyone’s Business.20. Keith Norcross, consultant orthopaedic specialist: letter in World Medicine, May 16th 1981.

21. Sir Hugh Jolly, consultant paed: letter in the Daily Telegraph, May 5th 1981 22. Friedrich Wilheim Nietzche (1844-1900) in ‘Antichrist’.23. Julian of Norwich, Revelations. Chapter 68. 1373.

Dedicated to our dear, much - missed friends, George and Bobbie Anderson. They taught us so much about love and service. Without their influence, common sense and above all, their close walk with God shared lovingly with us back in the 1960's in Pittsburgh, we would have found this journey so much more difficult to travel. Charles and Jennifer Gray

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