Autumn newsletter 2015

We were proud and privileged to receive an accolade for our dental leaflet at the BMA Patient Information Awards 2015.

Heartline’s ‘Dental Car For Children With Heart Conditions’ booklet, which provides practical tips and vital information to parents and carers of heart children. The booklet was produced in liaison with dental surgeon and Heartline member, David Van Wyk, who was also in attendance at the event, in London, last month. The booklet was described as ‘aims to inform parents of the potential damage to the heart of gum disease in children with heart conditions and to explain how damage to the heart can be caused’. It was reviewed by Juliet Brown, from SIGN in Glasgow, who commented: “This is a really good booklet, the writers have identified a clear need/gap for this resource and have worked hard to get the information out to families affected as well as including them in any review process.” The award was accepted by Linda McQuaid (Chair), David Van Wyk, Hazel Greig-Midlane (Executive), Natalie Persoglio (Trustee), and Denise Hadow (Treasurer).

Winners at British Medical Association Awards

Christmas Celebration!Help us celebrate Christmas and Hazel’s time with Heartline Families, as we host a special event on Saturday 12 December 10am-12.30pm at The Band Room, Coram’s Fields, 93 Guilford Street, London.With a special visit from Father Christmas, party games, food, refrehsments, a raffle, tombola, plus a cup cake competition and lots more fun! Places are limited to 70, so the event is on a first-come first served basis. Please email intouch@heartline.org.uk with the information required including: number of members of your family attending, names of adults and the names and ages of all children, email address, mobile number, postal address. Please reply no later than 6 November. Winter Wonderland Hyde Park will also be on at the same time - so why not have a day out or even a weekend in London, starting with Heartline families Christmas Celebration at Coram’s Fields (just north of Great Ormond Street Hospital).

Blue-eyed Soldier Boy A mother’s story by Emma Colquhoun

I was 19 years old when I had my first child. His name is Bobby-Lee and he was born with Hypoplastic Left Heart Syndrome, alongside some other things. Something wasn’t rightAt my 12 week scan, the doctors knew that something wasn’t right because he had fluid at the back of his neck. I refused the blood test from my womb so, at my 20 week scan, I went to King’s Hospital for a special heart scan, which took almost two hours to complete. It was at this point that I knew something was wrong with Bobby-Lee.

My world came crashing downAfter the scan, I was asked to clean up and some into their office. They told me the bad news and I could feel my whole world crashing down around me. Everything was a blur and sounded far away. I was having a little boy, which didn’t even seem important after being given the news that he would be born with a heart condition. I was then transferred to the Evelina London Children’s Hospital where I had too many scans to count. He wouldn’t survive birthDuring one of the scans, I was told that my boy wouldn’t survive the first 24 hours of life and asked if I would like to terminate my baby, but I had already made my decision. I was induced on the 8th May 2013 and welcomed him into my world on the 10th May at 3:19am by emergency section.Later I was told that he wouldn’t survive his first operation and he, once again, defied the doctors. He had his balloon procedure at 10 days old. His second operation was to fit a pulmonary artery band. It felt as though I was signing him away to strangers every time he went into theatre. Bobby-Lee is doing fineHe is now 21 months old and is due open heart surgery this year. No one seems to understand the worry that goes through my mind, apart from other heart parents and without Heartline I don’t think I would’ve coped as well as I have. My little boy and I are doing great and, so far, he’s gaining weight just fine. The nurses and consultants are all very happy with

him. He has survived everything that life has had to throw at him. He is my blue-eyed soldier and, in my eyes, he is a miracle.

Terms Used:Hypoplastic Left Heart Syndrome: a condition where the left lower pumping chamber (left ventricle) of the heart does not develop properly so is much smaller than usual. The mitral valve between the left ventricle and the upper left filling chamber (left atrium) is often closed or very small. Pulmonary Artery Banding (PAB): a band is place on the pulmonary artery to prevent excessive blood flow to the lungs.

Balloon Procedure: A balloon is inflated on a catheter to widen the aortic valve.

Share Your StoriesThe HeartLine newsletter has always been filled with real stories of real heroes, would you like to tell us your story?If you would like to share your experiences in a future issue, please send an email with a brief outline to Natalie at trustee1@heartline.org.uk and we’ll be in touch.Also, if you have any requests for items you would like to see covered in the newsletter, please send an email.

Did you know...Once your membership has been confirmed by Heartline you can join a private Facebook page. The closed group allows members to keep in touch with likeminded heart families to share stories, experiences, photos and questions in a confidential setting that can’t be seen by non-group members (e.g. your other friends).

Heartline Caravan Update

Looking back to August last year it would not have entered my wildest dreams that we would have raised suff icient funds to replace BOTH our caravans. BUT we have done it.In July, we were nearing the end of the fundraising and The Oakdene caravan was purchased and waiting for me to get the contents sorted out before exchanging old for new, as agreed with the site. Mablethorpe was al-most fu lly funded but with lots of paperwork to do and a trip to f inalise the deal. Holidayers had been staying in the caravans and many more were expected when… I get a call to say that the Oakdene caravan has disp-peared not there, empty site…I called everyone I could think of to try and track it down. It turned out that the site had mistakenly towed away the old caravan, all the contents inside, includ-ing our much valu ed visitor books! After a few minutes of ‘this cannot be happening’ and having grasped an understanding of the miscommunication that had given rise to the lack of caravan, the site manager, Liam Mc-Carthy, leapt in to action to help save the day!F irst they rehomed our Heartline family in another caravan, so they could enjoy their week. Then they organised the replacement caravan for the site. Having established that the contents were gone for good, the management agreed to replace the lot, for which we say thanks. The f irst family to use the caravan, the Coopers, kindly donated some things which were missing including the all-important, brand new, visitor book. I travelled to the caravan to f ind Heartline support-ers Caroline Mutton and Wendy Lynch setting up in the caravan. They kindly offered me a cup of tea and we had a chat while waiting for Liam who came over to assess what still needed to be done. Having sorted out the major issu e of the ramp re-f ixing, Caroline and

Wendy agreed to get some of the contents which were needed.Below you can see a picture of Max, Maisy (Wendy’s children) and Oli (Caroline’s child) all standing outside our lovely Heartline caravan. Thank you for letting me visit and meet you, and thank you for your ongoing help with the contents and cleanliness of the caravan. Mid-September I headed off to Mablethorpe to f inal-ise the arrangements for the replacement caravan, on a new space in Spruce Green, near to the wonderful facili-ties. Nicola Garbutt, who has been doing a wonderful job administering the bookings, has also raised, with her daughter, over £170 towards new contents, includ-ing a new TV, for the Mablethorpe caravan. Thank you Nicola, and family.Golden Sands have been most generous in their ar-rangements, including supplying new contents for all standard items and making the transfer from one caravan to the other as easy as possible for us.So, 2016 is set to be a wonderful caravan year. Let’s hope the weather is always as good as in the photo!We shall be setting the dates and prices for next year and will let everyone know via the website and email as soon as they are agreed. Thanks to all the grant-making trustees who realise what a valuable re-source these caravans are and how they en-hance the lives of heart children throughout the country.

Denise

By Treasurer Denise HadowHeartline has two caravan holiday homes for our registered families to use when they need a well-earned break away. In recent months the future of our caravans has looked bleak with the threat of closure. The last few weeks have seen a complete turnaround and there has been great news at Heartline HQ...

Millie’s JourneyBy Millie’s mum, Lindsey Betteridge

It’s hard to imagine what families are feeling when you see them on the TV. The sad adverts that show children suffering with cancer, starvation. You can never seem to begin to imagine what they are go-ing through until the nightmare becomes yours.

We didn’t sleep well for the first few months of her lifeMillie was my second child, her sister was two years old and it seemed like a good time to have another child. Our ultrasound scans were perfect, we even saw the four chambers of her heart and they looked perfect. Millie was born on the 6th January 2006, she weighed 7lb 12oz, she came out crying and instantly settled with a cuddle. The day we were to be discharged, the doctors noticed a heart murmur. They told us not to worry and that in six weeks it should be fine. Upon leaving the hospital the doctor suggested we seek medical attention if Millie started to go blue or stop breathing. I can safely say we didn’t sleep for the first few months of Millie’s life.She would need heart surgeryWhen we went back for Millie’s check with Doctor Reynolds, he studied the scan for a long time and then suggested he would have to refer us to see Doctor Gibbs. Doctor Gibbs is a lovely man, and he paid so much attention to making us feel at ease and calm. He studied Millie’s heart for a while and then broke the news to us. My heart felt like it stopped when I heard our baby had Tetralogy of Fallot, and she would need heart surgery to correct the problems. From the moment of hearing the news I didn’t hear anything else the doctor said, all I imagined was my baby having to go through such trauma. We then met with

another doctor who explained all about the operation Millie would have. I don’t know what I was thinking of throughout the meeting, as I only heard certain parts of the information, such as ‘stopping her heart’, ‘by-pass’, ‘brain damage’. The longest six hours of my lifeMille was eight months old when she went for her open heart surgery, it was the longest six hours of our life. There were so many machines it was hard to take it all in, looking around the room I realised how lucky we were to have Millie. A little boy, in another bed, was so poorly that the doctors couldn’t work out what was happening, there were really tiny babies that were restricted and couldn’t have cuddles with their mums. I realised how lucky we were and, from that moment, I realised that - no matter what’s happening - there is always someone else worse off than yourself.Millie’s brother is born with difficultiesMillie didn’t require any more surgery for a long time, we fell pregnant and gave Millie and her older sister a baby brother, Zack. As Zack developed we realised something wasn’t right; he wasn’t walking or talking. All different kinds of doctors looked at Zack performing all sorts of tests, but still no diagnosis. Zack was seven years old before doctors admitted they’d hit a brick wall with science and there was nothing more they could do for him. Zack is a beautiful boy filled with mischief and curiosity. He has a wheelchair, a walking frame, and he attends a special needs school.Two year check – no ear piercingMillie attended her two year heart check and was hoping to hear she could have her ears pierced but the doctor suggested that it was too risky and could make her very poorly. The doctor drew a picture of Millie’s heart, sat down and explained to us exactly what it was that he was seeing on the scan. We’d had so many checks at this point that I assumed this one would be the same as the rest. It had been eight years and she had been in perfect health. I couldn’t believe it when he said that she would need to go to Leeds to have further investigations, as her narrowing had developed again which was rare.

Millie starts to have nightmaresMillie had nightmares for a while, having a fear of waking up while the doctor was still working on her in surgery, which was really hard to convince her that it wouldn’t happen. She eventually got past her fears with the help from her friends and school.Once her surgery was confirmed, we met with teachers at Millie’s school to ask for support and their response was overwhelming. I had to inform my work, and my university as I was in the middle of my degree in mental health. My work has always supported me and university offered me the same support.Overwhelming supportMillie went to school as normal for a while, the teachers read up about Millie’s condition ready for any questions she might have for them. The reaction from everyone around us was incredible; our friends, family, work, schools, all just gave us this overwhelming support, which allowed us to focus purely on Millie. We arranged for our older daughter, Courtney, and son, Zack, to go stay with family for the time Millie would be in hospital. She has been a fighter since she was born, and nothing will ever stop her. She is

determined and was determined to get back to school as soon as possible.Smiling as she was going under anaestheticWe went into hospital in October 2015, ready for surgery the next day. The Children’s Heart Surgery Fund provided accommodation for me and my husband, which was one less thing to worry about. The morning came for Millie to go down to theatre. She was playing a board game with me and her nan, full of life and happiness. Even as she was going to sleep, Millie was still smiling. Four hours later, we were sat in the canteen waiting when ICU called to let us know she was back from theatre.I wanted to hug her surgeonAs we entered the intensive care ward, we were all so nervous. She was hooked up to all of these machines and I glanced around and thought how lucky we all were. The doctor came over to Millie’s bed and told us how well things had gone. It gives you an overwhelming feeling that you just have to hug the man who has just saved your daughter’s life and given her life better quality! What an amazing man he truly is, making a massive difference in our family and hundreds of others’ lives every day; no words could ever describe how truly thankful we really are.Her progress was outstandingMillie was in and out of intensive care within 15 hours. She was awake instantly when we arrived and kept pointing to the tube in her throat to be taken out. 15 hours later Millie was on Ward 5. She was placed straight on to the ward as her progress was outstanding. She instantly made friends with two other girls. After a couple of days she was off her drip and off morphine. In no time at all she was at the nurses’ station, talking and singing to them. Millie will never forget the kindness shown from the nurses, doctors and play ladies at Leeds General Infirmary. She has a great appreciation of life and, although this impacted on our lives (and we had to slow life down for a while) it showed us how precious the little things are. Back to normality We are all back to normality now. Zack is happy at school and a diagnosis for him is still on-going. Courtney is almost 13 and excited about a disco for her birthday. I am back at work and university and graduate this year. My husband is still a great support and balancing us all. Millie is back at the Brownies, having her swimming sessions, back to school, happy and healthy. I can’t begin to thank the people around us enough for the help and support they provided. And, to the doctors who twice saved my daughter’s life - you will always be in our thoughts and we will be thankful to you every day for the miracles you perform. Thank you.

Terms Used: Tetralogy of Fallot:

a hole between the two ventricles (Ventricular Septal Defect: VSD), and a narrowing between the right ven-tricle and the pulmonary artery (Pulmonary Stenosis: PS). The right ventricle has to work at high pressure to pump the blood through the narrowing to the lungs, so some blue deoxygenated blood is pumped through the VSD and into the aorta.

A mother’s instinctBy Amanda Bell Tanesha is the youngest of my three children, she is six years old and has fought for her life from the moment she was born. Soon after she was born I noticed that she was struggling to latch on to the breast and feed. I mentioned this to the nurse, who suggested it might be the after effects of the labour drug Pethidine. It had been a difficult pregnancy and birth with a lot of blood loss and I was still exhausted.We arrived home and my family came to see her with gifts of clothes and teddies, while she just slept. As the days went on, I continued to struggle feeding her. I asked for help from the breastfeeding link worker and explained that she seemed to be fighting to feed. I mentioned to the midwife that her breathing was fast and she was bobbing her head. The midwife counted her breaths, weighed her and said we would see how things went on. Sweaty, cold and clammy to touch Three weeks later, and her feeding was no better. By now I had started to notice that she was sweaty, cold and clammy to the touch. Something just wasn’t right. The midwife weighed her to find that she had lost 70g overnight and so she was booked into the hospital for an assessment. They came to the conclusion that it was reflux and sent us home with some Gaviscon. By the following Monday she was vomiting at every feed and I went back to hospital with her – worried. The doctor checked her femoral artery and her liver, which was enlarged and then seem to spend ages listening to her chest. He eventually left the room and came back with another doctor. “I’m sorry, we’ve found a heart murmur”They listened to her chest for what seemed like a lifetime, before he said: "I'm really sorry we've found a heart murmur. Has anyone else mentioned the murmur to you?" I told him they hadn’t and asked him if she would be okay. She was sent for x-rays and blood tests. The x-ray revealed that she had a streak across her lungs and that they would need to carry out a lumbar puncture. I refused and demanded to speak to someone about what was happening. An hour later I spoke to another doctor who said she didn't need the lumbar puncture, as he was 99% sure the problem was her heart. We were transferred to Leeds Hospital the very next morning.All that night I sat watching Tanesha sleep and crying by her cot - I was so scared. The next morning went by in a blur, the journey to the hospital, the echocardiogram and the doctor telling me “There is something wrong with your baby’s heart. She has complete AVSD (atrioventricular septal defect). I will draw it to explain.” I struggled to see it as tears started to fill my eyes. I tried to ask questions but the words wouldn't come out so I kissed Tanesha and passed her to the nurse, ran to the toilet to be sick and rang my family.When I came back out they had already put a nasogastric tube in her nose for feeding and oxygen

tubes. She was so upset I just sat there crying, holding her, and I'll never forget the look on her face as I picked her up she was so frightened. The next few days were a blur - nurses taking blood and doctors carrying out tests - I just wanted them to leave her alone. It drove me insane hearing her cry all the time and unable to do anything. The doctors on ward round said the same thing every morning: "she needs surgery as soon as possible". She was slowly getting worse wasn't keeping anything down now and her weight was decreasing all the time. They kept her sedated most of the time because her heart rate was hitting the 200s.Magic HandsTwo weeks after arriving at Leeds Hospital, the surgeon introduced himself to me – I knew him as God or Magic

Hands! I will never forget his words, he said" this is a serious condition, a very hard surgery. We have to patch two holes, one at the top and one at the bottom and then split the common valve.” He said a lot after that but most of it is a blur. I shook his hand and said “Please fetch her back to me” and he nodded saying “I will do my very best”.I will never forget what you have doneThe next morning, they gave me a gown to put her in and we walked down to the theatre. It was the worst day of my entire life. With tears rolling down my face, I kissed her cheek and whispered that I’d see her soon. Tanesha’s surgeon said it would take around eight and half hours but eight and half hours came and went with no news. At the ninth hour, the nurse

told me Tanesha was in ICU and that I could go to see her. There was so many people around her bed that I couldn't even see her. Her surgeon asked to speak to me in a room off the unit and I was shaking as he walked into the room. He smiled and said it had gone well but was a very difficult operation. I was too upset to ask anything and so my sister asked all the ques-tions. I went over and shook his hand and said “thank you so so much. I will never forget what you have done.” Complete heart blockTanesha was very swollen and covered with tubes. They had left her chest open, as her heart was enlarged. They told me that the next 48 hours were the mostimportant. The next two days passed by slowly. She mostly slept and they stabilised her blood pressure with different medicines. She also had a temporary pacing wires as she had a complete heart block. I sat by her bed day and night, only taking breaks for food and naps. I was scared to touch her at first because of her chest and it was at least a week before they could close it. I was so happy when they closed her chest, as it meant they could start

to wake her. After two long weeks, she finally opened her eyes.Three weeks after her surgery, she went to HDU. Her heart rate was low and there was talk about her being fitted with a permanent pacemaker to help. This was a very difficult time, watching her go through so much and not being able to help her was the worst time of my life. I felt like she was prodded and poked all the time. She ended up with septicaemia and bowel problems, and, at one point, it was looking likely that she would have to go back to ICU. Sad to leave themBecause of the bowel problem, she had to go seven days without food and that was complete agony for me. I spent time with the hospital psychologist to help me get through the days. After so many problems and issues, Tanesha made slow but steady progress and we slowly got moved up the ward and closer to the door. We met some wonderful people in the hospital and I was sad to leave them, but glad to be going home. I was so happy, but scared. The nurse came out twice a week to check her sats and heart rate and she continued to do well. I continued to check her sats at home and, in august 2010, I found her heartrate to be 55 and she was so sleepy. We went to hospital and she was monitored for 24 hours. The ECG showed her to have a complete heart block and we were transferred back to Leeds Hospital, where she was fitted with a pacemaker. She still gets breathless and sweaty, but this is due to her leaky valve.

Tanesha was recently rushed to Leeds General Infirmary to have her pacemaker replaced, after she had a fit and stopping breathing. Thankfully all was well and she is now back to six-monthly check-ups. I’m so proud of her, no matter what she goes through she always has a smile on her face.Mum’s instinctsI am so grateful to the team at Leeds. I know she will possibly need more surgery as she grows and her pacemaker will need to be changed but she is strong in every way. She is a true fighter, my little miracle. If I had any advice for new mums it would be to keep pushing if you feel something is wrong. Mum’s instincts are usually right.

Terms Used:Heart murmur: a noise produced by blood flow in the heart and vessels. Lumbar puncture:a medical procedure where a needle is inserted into the lower part of the spine to test for conditions affect-ing the brain, spinal cord or other parts of the nervous system. Heart murmur: a noise produced by blood flow in the heart and vessels. Atrioventricular septal defect (AVSD): a large hole in the wall between the atriums (ASD), and a large hole between the ventricles (VSD). Instead of a mitral valve and a tricuspid valve, there is only a single valve in the middle of the heart.

Nasogastric tube (NG tube):a tube which goes from the nose to the stomach for direct feeding.

ICU: Intensive Care Unit. Heart block / complete heart block: a disturbance in heart rhythm so that the ventricles beat more slowly than the atriums, described as first degree, second degree or complete. HDU: High Dependency Unit. Pacemaker: a device to control the speed of the heart. Sats: short for oxygen saturation.

Beau’s story By Beau’s mum Hannah HenriquesIn ever loving memory of Beau Halo Henriques 04/08/2009 - 23/06/2015

At just 19 years of age, I became unexpectedly pregnant. In an instant, my life had been completely overturned but just how much so, was not yet known. During my 20 week anomaly scan, the sonographer scanning my unborn child had difficulty visualising all four of the heart’s chambers. At this stage, we knew no more and were advised to return the following day to meet with the fetal medicine team. However, the following day we were given the ‘all clear’, the fetal medicine consultant could see no major abnormalities – this news could not have been further from the truth. Just a precautionAs a precaution, we were sent to Southampton’s Princess Anne Women’s Hospital the following week; it was here that we were given the devastating diagnosis. Beau, my unborn child, had been diagnosed with no less than eight congenital cardiac abnormalities; a midline heart with a hypoplastic left ventricle, an unbalanced complete atrioventricular septal defect (AVSD), a double outlet right ventricle (DORV), malposed great arteries, pulmonary stenosis, a common atrioventricular (AV) valve and an interrupted inferior vena cava (IVC) with azygos continuation to the superior vena cava (SVC). Beau’s internal organs were also positioned in mirror

image arrangement – she was diagnosed as having heterotaxy syndrome with left atrial isomerism. I was told that ‘these’ children lived limited life spans due to the complexity of the cardiac defects and other associated factors. I was subsequently given two ‘options’; terminate the pregnancy (bearing in mind I was now 22 weeks and was on the cusp of fetal viability), or continue with the pregnancy, with the understanding that my unborn child would undergo a three-staged palliative surgical intervention plan, that in itself was of high risk. Understandably, I was devastated. Beau’s birthBeau Halo Henriques was born at Southampton’s Princess Anne Hospital on the 4th of August 2009 at 10:36am, weighing a small (but perfect) 5lb and 14oz. The labour was uncomplicated, however, due to the nature of Beau’s antenatal diagnosis, a team of specialised clinicians and health professionals awaited Beau’s arrival. Minutes after birth, Beau was immediately transferred to the Neonatal Intensive Care Unit (NICU), where she was later transferred to Southampton General’s paediatric cardiac unit – E1 (Ocean Ward).Beau surprised all involved with how well she coped with her (now) altered neonatal circulation, it was believed that her other cardiac defects (predominantly, the pulmonary stenosis) were actually beneficial in pro-tecting her lungs from ‘overloading’ pressure and as a result, she required no immediate medical intervention.After two weeks on the ward, we were allowed home. Beau was monitored closely with weekly visits from the community nursing team. As a result of her condition, Beau struggled with various issues, from severe reflux to the challenges of failure to thrive, however, and as cliché as it sounds, Beau was always such a bonny baby. The beginnings of surgical intervention At six months of age, it was agreed that Beau required her first cardiac intervention – a cardiac catheter. The procedure was routine and was again, uncomplicated. The results later confirmed Beau’s anatomy and an approximate date of surgery was given. At 14 months of age, Beau underwent her first open-heart surgery – the Kawashima. The surgery went well. She was extubated and transferred from the Paediatric Intensive Care Unit (PICU) to the ward the following day. The procedure is often associated with the condition chylothorax, unfortunately, Beau went on to develop this. The condition resulted in a long and tedious recovery as an inpatient. However, the chylothorax continued, it was then decided that the high pressures within Beau’s pulmonary branches were contributing factors. To be certain, the clinicians would need to investigate the cause through a cardiac catheter. Beau went down to the catheter labs at 8:30am the next day; we didn’t see

her again until gone midnight that night. What was to be a routine procedure had now turned into emergency open-heart surgery – the clinicians had deployed a device into her pulmonary branch regions in an attempt to block the backflow of blood to the now unused pulmonary artery. However, through doing so, the device had blocked the access of blood flow to Beau’s right lung. After an incredibly long wait, we went to see Beau on PICU, the clinicians explained that they had overstitched Beau’s pulmonary artery and had used a patch enlargement to widen her pulmonary branches. It was expected that Beau would have a difficult night. But, Beau being Beau surpassed the professionals’ expectations and was again, extubated the following day where she was then later transferred to the ward.Beau surpassed expectationsBack on the ward, Beau’s recovery was again slow. She had further complications, this time including vocal cord paralysis and the severe (and continual) vomiting of blood. Over time and with treatment, these

complications were resolved, and after a three month stay with 2 open-heart surgeries, cardiac catheters and other numerous procedures, we were allowed home – just in time for Christmas!Christmas came and went, but Beau was still not quite ‘herself’, so a few days after Christmas we returned back to the ward – but this time, our stay was to be a fleeting few-day visit. Back homeBack home and life slowly returned to normal, Beau was still being fed via NG tube and was on a continuous MCT diet, however, this was not for long. Beau began to crawl and other milestones were met, Beau had been given a new lease of life, nothing was stopping her. Birthdays came and went, nursery years came...and went - time flew by.

Then the pre-school years arrived. Although Beau was thriving, she still coped day-to-day with low oxygen saturations and moderate to severe developmental delay, the gap between her and her peers began to increase with age. It was at pre-school that it was decided to begin with the application for the statement process in preparation for school, the result was positive and Beau started school in the September of 2013, something that was more often than not, not expected to occur.

Proud momentsAt school, Beau, with the help of the school and her 1:1 teaching assistant, blossomed into a bright (as a button!), thoughtful and popular little girl, she excelled in all of her classes (despite only attending half days and having a poor attendance score), and would often return home with awards and certificates. I could not have been more proud. Beau led a fulfilled and busy life, which included many hobbies and interests; horse riding (to the horror of her cardiologist!), ballet and tap dancing, drawing and painting and the typical five-year-old girly ‘things’ (Barbie’s, pretend play and Disney’s princesses [of course!]).The FontanAt the age of 5 years, Beau became increasingly tired and relied heavily upon her wheelchair. Her cardiac team jointly decided that preparations for her Fontan completion should commence. In the October of 2014, Beau had a cardiac catheter, again, this was relatively routine, during which, many collaterals were coiled (of which she had always had ‘issues’). We returned home that very day, with a very bouncy Beau. Before the Christmas of 2014, Beau had her first cardiac MRI, but again, this required only a short stay on the ward.With surgery plans put firmly to the back of our minds, we had the best Christmas of yet. Springtime arrived and we were booked to meet with Beau’s surgeon, he anticipated that the surgery would take place around May/June time. Beau was to have the intracardiac conduit due to the complexities of her anatomy, the pros and the cons were explained. In the meantime, we made a last minute trip to Center Parcs, we had a fantastic time and were all sad to leave – little did we know that this was to be our last family holiday together.A date for surgeryA date for surgery was given, we were to go in on the 9th June for surgery to take place on the 10th June. The day of admission arrived, we were welcomed on to the ward where Beau settled in and underwent all the necessary checks, observations and investigations. Beau was also cannulated, one thing that she has always truly detested but with the help of the psychology and play team and a syringe full of Midazolam, we were on our way. The day of the surgery was upon us, Beau went down to theatre at approximately 1:30pm, she was given sedation and listened to Disney’s Frozen ‘Let it go’ as she drifted off. That was the last time I saw my precious little girl as she was.The last time I saw my little girlAround 11:30pm that night, Beau’s surgeon came to debrief us, he explained that the surgery had gone as well as it could have, but the team had encountered problems with the positioning of the conduit and Beau had lost a large quantity of blood.

Her anaesthetist followed, he explained that from an anaesthetic point of view, surgery had gone well but he reiterated what Beau’s surgeon had said, and as a result, Beau’s chest had been left open to allow for swelling – a natural anti-inflammatory response. We were told we would see her within 30 minutes. 30 minutes came and went, and an hour came and went. Around this time, a junior doctor, escorted by two of the ward’s nurses, told us that Beau had been taken back to theatre as they had had problems balancing her pressures. We waited.At 4:00am, Beau’s surgeon came down to tell us that all was ‘well’, Beau had required her chest to be opened further. We went to see Beau soon after, she was kept in a hypothermic state to protect her vital organs and at this point required optimum support but was doing well considering. Seemingly uneventfulThe next day was seemingly uneventful, Beau had periods of severe hypertension but this was corrected on all occasions with fluid and drugs. However, at 6:30pm that evening, we were sat with Beau when her blood pressure dropped considerably, the usual fluids and drugs were given but made no difference to the falling stats. At this point we stood back as we knew what would follow. Beau went into cardiac arrest and cardiac compressions were commenced by the team. Parents were escorted out of PICU, while professionals surrounded my daughter, working on her tirelessly. The team decided to ‘put’ Beau onto ECMO, by this time, we were required to leave.The following hours went by in a dull haze; we were in a state of shock and disbelief. At approximately 10:00pm, Beau’s surgeon and the lead intensivist (whom began initial cardiac massage) returned to explain that Beau had endured more than one hour of chest compressions but in the meantime had been successfully placed onto ECMO – her recovery was bleak but they remained positive. We were devastated. How did this happen? Why Beau and why now?The following two weeks were a rollercoaster of emotions, the cause of her arrest was still unknown and with this lack of information of the cause, there essentially was nothing to ‘fix’ or to put right. It was a matter of waiting and letting her heart recover.Beau endured countless operations and procedures whilst on ECMO and maximum support (including dialysis) was given, which in the end hindered her recovery chances. On the Monday the 22nd of June, and after liaising with Newcastle, it was decided that no more could be done for Beau. Her machines were to be switched off at 10:30am the next day – Tuesday the 23rd of June 2015. Tuesday 23rd June 2015Tuesday arrived, we had made the most of every moment spent with Beau during her time on ECMO and the last moments were no different. The team ensured that Beau would be given every chance of coming off of ECMO and as they prepared for the (low-flow) trial, the team insisted that Disney’s Frozen was played. So as Frozen played, we anxiously sat behind the curtains awaiting a ‘miracle’. To the teams and our amazement, Beau came off of ECMO, her heart function had returned and was near perfect (for her) – neither the team nor we could believe it! The team liaised with us throughout, keeping us informed, and we felt the atmosphere within the room change completely, it all seemed so positive. Eventually, after two hours, and out of the critical timeframe, Beau was no more critical than what she would have been postoperatively.

It was a true miracle. However, as soon as the theatre team and surgeon had dispersed, our miracle crashed. After all of the positivity that had preceded, Beau went into cardiac arrest for the second time – and the final time.Attempts were not made to resuscitate and my precious ‘baby’ died at 12:15pm that day.The life and memory of Beau Halo HenriquesWe miss Beau incredibly; she truly was our world and our life. She gave the world so much love and joy, which most could not expect to achieve in a lifetime, let alone in five (nearly six) years. Beau endured so much in her little life, including that of; three major open-heart surgeries, 20 other heart surgeries, four cardiac catheters and numerous other procedures – throughout her life, she showed so much courage and determination. She was and is my hero.Beau would often talk about the lifespan of the butterfly, fitting perhaps to the short but sweet and fulfilled life she lived. Our little butterfly may have grown her wings that day, but she remains with us in our hearts - always and forever.

In ever loving memory of Beau Halo Henriques 04/08/2009 - 23/06/2015

Terms Used:Please see www.heartline.org.uk/termsused for an easy-to-understand guide to some of the medical terms used in this newsletter.

Heart of StarsWhere our children are remembered

Heart of Stars has been set up by Heartline so that we can look at the sky and see where our children are remembered, for it is at the darkest times that the stars are brightest. Any Heartline family can have a star within the Heart of Stars dedicated to a child they have lost. See www.heartline.org.uk/remembrance.

A heartfelt thanks goes out to each and every one of our supporters who help make the work, carried out by Heartlibne Families, a possibility. The summer months saw a great hive of fundraising activity for us, with individuals, families and organisations getting stuck in to help raise much needed funds for our organisation. Without you we wouldn’t be able to continue the valuable support we offer to our families. Here are just a few of our supporters from recent times. HSBC 2015 fundraising for HeartlineDuncan Swatton, Area Premier Relationship Manager at HSBC, together with Alistair Ramsey, took on a fundraising challenge on behalf of Heartline. Duncan’s son, Matthew, was born with heart conditions, which needed medical intervention and surgery when he was just a few days old. Matthew’s diagnosis of Pulmonary Atresia with VSD with Fallot type has seen him undergo many different operations. Duncan was inspired to promote our cause who has known Heartline for many years. He told us about his son Matthew and how his contact with Heartline had inspired him to promote our cause.“Matthew’s first operation was at three days later, followed by one at five days old. He had his first repair with a homograft when he was two years old. He has had a repeat repair last February, aged 11, and is doing really well. Heartline has always been there to offer support if required. Matthew still has, and treasures, his Heartline teddy which he got when he was born and the book (Heart Children: A Practical Handbook for Parents) that was available to us helped greatly to understand the road ahead.” Ali and Duncan got the managers together to raise £500 with their ‘Heartline Day’ and a curry/quiz night.

A heartfelt thank youto you all!

Out of this world fundraisingThe Galactic Knights fundraised for us over the last year and with the help from heart mum Claire Flavell we were presented with a cheque for £1,400 by David Chapman (Galactic Knight and heart dad) and Alice (heart mum) Thank you to the Galactic Knights for all their help in raising awareness of Heartline and fundraising for heart children.

Sarah’s Star FundThanks to the McKain family for their generous donation of £2,500 on behalf of Sarah’s Star Fund towards the running costs of the caravan holidays. We can start the caravan year knowing we can afford to ask the site to fix maintenance issues and keep the caravans working without thinking twice about whether we do so or need to find a volunteer to go in and help us out. Thank you to Hannah and Anne.

A plaque will be placed in the caravan at Mablethorpe in honour of Sarah.

And to the many others, too many to mention every one, every activity and effort undertaken:N Smith CT; CH2MHill; The Sobell Foundation; The WE Dunn Trust; The Hospital Saturday Fund; Barbara Shuttleworth Mem Trust (Wetsuits for W Yorks); AD Power Will Trust; The Kathleen Laurence Trust; The Albert Hunt Trust; Sir Jules Thorn Charitable Trust; The Edith Florence Spencer Memorial Trust; J E Moses TW Fund; Marlborough House School Young Entrepreneurs; Trina Roberts and Chris who survived a sponsored zip wire challenge; The Armourers and Brasiers’ Gauntlet Trust; John Greig-Midlane sponsored run; Roger Vere Foundation; Sprowston C High School Fund; The ex-100 Club Members; Roger Vere Foundation; The Good Wine Shop; Claire Flavell; SN Tompkins; Michelle Young; Paul Sykes; Cari Brearley; Denise Hannah; Sarah Richards and Bella for their Cake Sale; The William Openshaw Street Charitable Foundation; The Ritchie Charity Trust: Linda Hardy; Kevin Ford; Aimee Georgeson: Susan Urwin; Rosie Freeman; Maria McIntyre; Rachel Perkins; Lynn Grout; Michelle Young; Members of the Children’s Heart Support Network; Wycombe Abbey School; and the many donors through our website, a heartfelt thanks.

Caravan Holiday Bookings 2016We shall be announcing the availability of the caravans at Mablethorpe and Oakdene as soon as we have the formalities sorted and approved by the Trustees. We shall place the details on the website and notify via Twitter and Facebook.

Anyone, with a heart child, wishing to register an interest in a stay next year may email Volunteer@heartline.org.uk

We cannot offer places in advance of the general announcement but we will keep a record of your interest and email you when the announcement is to be put up.

Special Thanks for support with our caravansGoldsmiths’ CompanyThe Albert Hunt TrustSir Jules Thorn Charitable TrustThe Theo Walker FundThe Clothworkers’ CompanyThe Bruce Wake CharityThe Toy TrustThe Hedley FoundationGarfield Weston FoundationThe Percy Bilton CharityMembers of the ex-100 Club!And towards Running Costs and Contents:Sarah’s Star FundThe Sykes Family Nicola Garbutt and familyCaroline Mutton and Wendy Lynch

Heartline Families32 Little HeathLondon, SE7 8HU

www.heartline.org.uk Telephone: 033 00 22 44 66Email: admin@heartline.org.ukFacebook: www.facebook.com/heartlineukwww.twitter.com/heartlineuk

Heartline Families is a Charitable Incorporated Organisation. Registered Charity Commission No: 1153442

Medical TermsA full explanantion of the medical terms used in articles and features in this edition of the HeartLine magazine can be found at:www.heartline.org.uk/termsused

Keep in TouchDo we have your most up-to-date contact details? Please complete the form on the website to update us, or email intouch@heartline.org.uk or contact us by using the details below.

Heart Children BookA practical handbook for parents… For the past 30 years the Heart Children book has guided parents and families through the heart condition that children may be born with or acquire, the treatments available, and how to deal with the many medical and social problems that they may have to face.How to get your copySingle copies are free to Heartline Families. Single copies £7 (plus P&P). Send either a cheque made payable toHeartLine Families, or BACS receipt for payment to Heartline Lloyds - sort code 30-96-96, a/c 59276960with a clear delivery address to Heartline Families 32 Little Heath London SE7 8HU.

Tell Your StoryHeartline Families is edited by Natalie Persoglio.

Please send articles, photos and feature ideas by email to trustee1@heartline.org.uk

Heartline magazines are also available on our website

Warm Winter WetsuitsIf you are a Heartline family in need of a wetsuit please complete the form at www.heartline.org.uk/joining-us/wetsuits. We provide wetsuits to enable children with heart conditions to enjoy swimming without the worry of becoming too cold in the water. See the website for more details.