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 Gills 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 Childrens
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 &
The following day Gill was discharged from the Womens
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.
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.
Gill applying Flamazine cream to Annas
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.
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.
Weve 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 Annas condition. We are so glad we found them
and GEEPS in general.
We kept a blog of our experiences where you can find much
Jimmy, Gill & Anna May 2009