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Experiences

Anna shortly after she was born.

On 9th November 2007 at a routine 12 week scan we first heard the word exomphalos. We thought the World had stopped turning. We were told that there was a 1 in 3 chance of Edward’s Syndrome and that would be lethal. That was a Friday afternoon and Gill had a CVS first thing on the Monday morning. In all honesty, we didn’t really know what outcome we favoured – a miscarriage resulting from the CVS, a diagnosis of Edward’s Syndrome or the results coming in clear. At least the first two outcomes would have been clear cut – we really couldn’t get our heads around what the third one meant. When the CVS results did come through OK though we were both relieved – bit like tossing a coin thinking you don’t mind the outcome.

Throughout Gill’s pregnancy, care was at the Fetal Medicine Centre at Birmingham Women’s Hospital. In all there were 14 scans further scans. The exomphalos was large containing bowel and plenty of liver but every indication throughout was that it was an ‘isolated structure’. We did our very best to enjoy the pregnancy and succeeded up to a point - it was a very anxious time though. The uncertainty of what was ahead was almost unbearable.
Proud Mum & Dad
Once Anna was born, we knew her care was going to be be across town at Birmingham Children’s Hospital. At about 28 weeks we went up there to meet one of the surgeons and take a tour of the Neonatal Surgical Ward. We found that incredibly helpful – not so much in terms of understanding the likely surgical intervention but in seeing exactly where Anna (and we) would be after she was born.

We were given the option of a natural birth but told that a C-Section was probably advisable – especially as we live 2 hours from the hospital – the last thing they wanted was for Anna to be born on the hard shoulder of the M5. She was due to be delivered on 16th May 2008. We packed our things and headed up to Birmingham but unfortunately there were no special care cots available at either the Women’s Hospital or the Children’s Hospital, so we had to come home again. This was repeated a couple times more until eventually she was born on the evening of 19th May. Three paediatricians got to work on her straight away and I was amazed that after a few seconds, they called me over so that I could have a look. They were trying to bundle her into a ziplock plastic bag and stuff a naso-gastric tube up her nose but she was breathing unaided and putting up a really good fight! It was such a relief and, to be honest, I hardly noticed the exomphalos. The paediatricians wheeled her past Gill so that she was able to say hello for a bit too.
All warm and cosy

Once Gill was in recovery (happily eating toast), I was able to go down to Special Care to see Anna. I took lots of photos which I was able to show Gill straight away. As it was very late in the day by then, the Special Care Ward was quiet so the nurses wheeled Gill’s entire bed down so that we could all have a few moments together. Early the following morning we were both able to hold Anna for the first time, which was really amazing. A cot became available at the Children’s Hospital that night so Anna transferred at about midnight. I was able to go with her and at about 2AM met her consultant for the first time. He explained very quickly that he would take the ‘conservative approach’ (aka paint & wait).

Anna's Exomphalos

The following day Gill was discharged from the Women’s Hospital so we were all back together. Anna continued to do well on the ward and was allowed to start breastfeeding after a few days. She picked up an infection which put her in isolation but she was never unwell with it. We brought her home after 3 weeks – that was so fantastic and unexpected when it happened. We had been terrified of the prospect of paint & wait, but in reality it was really, really straightforward. We had great support from our local community nurses and as Anna was our first baby, the dressing change was in fact no more baffling than a nappy change.
Gill applying Flamazine cream to Anna’s bump
In the ensuing months, the skin gradually grew over her exomphalos and closed at about 4 months – quite an amazing process to witness. We managed to get her lying on her tummy by about the time she was 10 weeks – albeit on a playmat that we put on top of other padding so there was a groove where her bump was. Once the skin closed, we could do normal stuff like take her swimming – which she loves. Throughout she has been totally unaffected by her bump and passed all her developmental milestones. She started crawling at 7 months and has always loved her food. Her bump remained quite large throughout, although her liver made its own way back into her body when she was about 3 months old.

She had her closure surgery on 7th April 2009 when she was nearly 11 months. The surgeons were able to get everything back inside and close her muscle. They even made her a belly button (of sorts). We were really worried about how much her surgery would set her back – she had done so well up to then. It seemed unimaginable that you could fit everything that was outside back inside without giving her lots of discomfort. She really took the surgery in her stride and within 48 hours was crawling about the ward making a general nuisance of herself.
That's my duck and I want it now!

Once home she continued to do so well that we almost felt we had to pinch ourselves. We wondered whether she would miss her bump as she used to love messing with it, but surprisingly it took her about 3 weeks to notice it was gone. Even then she seemed unperturbed – just a bit intrigued by her new belly button.

The bionic woman

We've come across some amazing people on this journey. The quality of her medical care has been fantastic. From very early on we developed absolute faith in her consultant – he has never put a foot wrong. The nurses responsible for her care did a great job too – many going the extra mile to facilitate us being able to get close to our baby, especially in those vital early days. When it has really mattered the right people have been involved and made the right decisions. We’ve also experienced a wealth of kindness from friends, family and complete strangers – certainly not least through GEEPS. I can vividly remember reading these Experiences pages with tears rolling down my face a few hours after we found out about Anna’s condition. We are so glad we found them and GEEPS in general.

 

Anna's 1st birthday

We kept a blog of our experiences where you can find much more detail:

Anna's Blog

Jimmy, Gill & Anna May 2009