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My
son Jack was born on the 14th October 2004. His due date was
the 11th of November. He was born weighing 5lb 10Oz. Exomphalos
was diagnosed at the 12 week scan at Kings College. We were
told that it was very small containing only bowl. When Jack
was born the exomphalos was so small that the doctors thought
it might have only been an umbilical hernia. A scan after birth
was inconclusive. He was taken to intensive care and the repair
was carried out the following morning. The repair confirmed
that a small part of the liver was protruding and not the bowl.
Taking him off to surgery I thought my heart would break. I
was also feeling down as I had to have a caesarean as Jack was
breech Jack recovered well and was allowed home on the 31st
of October. Since being released he had follow up appointments
at the hospital and was discharged in May for good.
My whole pregnancy was a real worry. I am the sort of person
who worries when everything is positive let alone coping with
the unknown. Geeps was an amazing support mechanism for myself
and really helped me through some very worrying times. I can still
remember so clearly at my 12 week scan being told my baby had
Exomphalos. We were taken there and then for a CVS to check for
any abnormalities. Waiting for the results was a night mare. Thankfully
we were told everything appeared fine. I was so happy with this
news to then be told Jack would need a scan at 20 weeks to check
is heart. I was so upset as I knew by them I would be feeling
Jack moving in my tummy and I would also look pregnant. I had
tried to keep things quiet at work as I really did not know what
the outcome would be. However, this was not now possible.
At 20 weeks I went for the heart scan and a full body scan. Again
all appeared normal. I was so happy and emotional and thought
that we now knew everything. The lady who conducted the scan then
said that they had elliminated all they could but it did not mean
that there might not be further problems. She then explained about
Beckwith-Wiedemann Syndrome and how it can sometimes be linked.
I remember my train journey home so upset that we were still in
the dark. Geeps at this point was amazing as I was able to talk
to someone about my fears and feel I was not alone. Thankfully
further scans could not detect Beckwith and again my confidence
grew.
Kings College were amazing both pre and post natal. Although termination
was never recommended it was spoken about. I was told that some
women may choose to terminate due to a fear of the unknown. Thankfully
I carried on with my pregnancy and we now have the most amazing
little boy approaching two. He is developing normally and has
had no long term effects. Although he suffered from reflux as
a baby that has corrected itself. The surgeon did not link the
reflux to his condition but to the fact he was born early. He
is now talking, running around and is as bright as a button. I
feel for anyone who has to go through a similar experience. Thankfully
ours was a very positive ending and I wish this for all other
families.
Good luck
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