Isabel’s StoryGroup B Strep Meningitis

Pregnancy

• First pregnancy at 36

• Unremarkable

• Fit & healthy

• Waters broke 5 days before due date

Labour

• Labour ward advised me to use a maternity pad and call back in 1 hour.

• 1 hour later still leaking heavily with pale pea green discharge.

• Talked partner into ending his badminton early and got to hospital at 9.30pm after puncture en route.

• I was linked to a trace after I pointed out the meconium and played cards for 12 hours

Labour & Delivery

• Induced after 12 hours as labour failed to progress and epidural

• Another 12 hours later attempts at pushing then spinal block, attempted forceps & ventouse.

• Our daughter was born by emergency caesarean 24 hours after my waters broke.

• Grizzly from the moment she was born but I just thought this was normal.

• The midwives took her off me to calm her, and gave her Calpol for a sore head after forceps and ventouse.

Intensive Care• Continually grizzly when

handled

• Taken to Special Care afterrise in temperature and suspected infection at 16 hours old

• Given antibiotics & anticonvulsants but failed to respond

• Several large fits in first few days of life

• Organs began to fail and given 70% survival chance at 3 days old

Recovery• Improved overnight

• MRI scan results sent to London for analysis

• Discharged at 3 weeks old with prognosis of “probable problems with movement, vision, and possible intellectual problems...but the brain may astound”

After Effects - Isabel• 8 years old in March 2011

• Blind (cortical blindness) with severe cerebral palsy (spastic quadriplegia). She cannot walk, stand, crawl, sit, use her hands, feed herself

• Hip sockets haven’t formed properly due to possible secondary infection with meningitis & not walking

• Reflux - can throw up in bed

• Low weight - 2 weeks away from feeding tube

• Type 1 diabetes since 5 years old - due to severe bacterial infection?

• Premature puberty - affects diabetes

• Bright, chatty growing girl with a wicked sense of humour

Isabel

After Effects - Emotional• Heartbroken by Isabel’s disability. Feel part of Isabel is

missing

• Anger at not being offered or told about GBS tests. Even 50% accuracy of HVS test would have given Isabel a 50% chance of less or no disability. The NHS took a gamble and we lost

• Frustration at continuing GP, midwife, and obstetrician response that GBS testing is “not important”

• Depression - living under a grey cloud of worry; schooling, care costs & equipment, her & our life when she reaches 18, her care after we’ve gone

• Pride in my daughter and her abilities. But people can’t see past wheelchair and still too little inclusion and access issue for wheelchair users

After Effects - Family• 12 months before we could contemplate having another child. Spoke to consultant pre-conception to see how GBS would be managed. Offered planned c-section because of previous c-section & emotional concerns of waiting to see what happens after labour.

• Increasingly concerned during pregnancy about GBS and other risks. Low risk ratios do not mean it won’t happen to you. Wished away first 3 months of their lives fearing late onset GBS.

• Mild post-natal depression after birth of 2nd child due to relief at her safe delivery and wish that all the antenatal care could have been offered to Isabel as well

• Life with three kids is pleasantly chaotic and makes me realise how normal some of Isabel’s behaviour is

• Worry that Zoe & Leo will feel embarrassed to have Isabel as a sister

• Chris & I don’t talk about how we feel about Isabel

Leo - 19th June 2008

Zoe - 30th September 2005

January 2011

Easter 2011 - Chickenpox!

May 2011 - Practising camping

Group B Strep SupportGroup B Strep Support (GBSS) is a UK charity offering support

for those specifically affected by GBS and provides information to health professionals. www.gbss.org.uk

• Every woman should be fully informed about GBS and offered a sensitive (ECM) test to detect GBS carriage late in pregnancy (35-37 weeks).  The results can then be used to inform further treatment – IV antibiotics during labour.

• Sensitive ECM tests are not widely available within the NHS, although they are available privately (cost approximately £32).

• Current NHS policy uses 'risk factors' to assess GBS:

• high temperature during labour,

• waters breaking prematurely, and

• Previously have had a baby infected with GBS.

• But up to 40% of babies with GBS are born to mothers without any of these clinical risk factors.

GBS Testing• Routine GBS screening for all pregnant women

alongside risk factors would identify more women who are at risk than using risk factors alone. Following antibiotic prophylaxis, this could result in a significant drop in the cases of early onset GBS infection. Furthermore, research shows as a result of these additional cases being prevented, this would save the government an estimated £37 million per year!

• Ultimately vaccination is the answer. Vaccination would also avoid allergic reactions to the recommended antibiotics and concern about the emergence of antibiotic resistant bacteria. More investment in this area is needed.

Welcome to Holland• When you are going to have a baby, it's like planning a

fabulous vacation to Italy.  You buy a bunch of guide books and make all your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice.  You may even learn some handy phrases in Italian.  It's all very exciting.

• After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

• "Holland?!?"  you say.  “I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy"

• But there has been a change in the flight plan.  They've landed in Holland and there you must stay.

• The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

• So you go out and buy new guide books.  And you learn a whole new language.  And you meet a whole group of people you would never have met.

• It's just a different place. It's slower-paced than Italy, less flashy than Italy.  But after you've been there a while and you catch your breath, you look around and begin to notice Holland has windmills - and Holland has tulips.  Holland even has Rembrandts.

• But everyone one you know is busy coming and going from Italy...and they are all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I planned."

• And the pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, and very lovely things about Holland.

• Emily Perl Kingsley 1987