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Freddie a few weeks old
Freddie a few weeks old

Our younger son Freddie was born, five weeks premature, on the December first 1998 with an undiagnosed exomphalos and Downs Syndrome. Up until then, I had had a normal pregnancy and a normal delivery, with no indication of the problems to come. As soon as he was born, it was immediately obvious that all was not well, as he had a very small concave tummy and what looked like a huge umbilical cord containing a large bag of sausages.

My first recollection was the midwife grabbing what looked like (and probably was) a large roll of cling film, which he was wrapped up in. After a brief hello, he was whisked up to the special care baby unit.

He had the good fortune to be born in Bristol right next to one of the top children's hospitals. He was operated on the same day to repair the exomphalos. Fortunately the surgeon managed to replace all his intestines, which were undamaged and in one piece, although after the surgery his tummy was very swollen. I was very grateful that she also took the time to fashion a belly button (which is now respectably passable) as she said the operating team decided that they didn't want him to be teased at school for not having one.

Freddie with herniaFreddie with hernia
Freddie with hernia and as he is today

Later in the day there was another shock as we were told that they also thought he may have Downs Syndrome; exomphalos can sometimes result from chromosome abnormalities. After blood tests this was confirmed. The drama didn't end there as after surgery, he went into bladder retention, which led to kidney failure. Over the next few weeks we witnessed the amazing resilience of small humans as our baby overcame one hurdle after another.

He was drip fed for the first week, then moved onto a g-tube. I was encouraged to use the "cow" (milking machine) in SCBU to keep my milk going as everyone assured me that he should be able to breast feed normally. He was first introduced to the breast after 3 weeks and took to it immediately. Four weeks later on Christmas Eve, he was discharged from hospital with very little to show for his adventures.

For the first year he had an impressive umbilical hernia, which has now shrunk to the size of a small marble. He also has a large gap in his stomach muscles and a bit of a potbelly. Otherwise he is doing brilliantly getting on with all the normal 3 year old things like playgroup. We have had no ongoing problems with his exomphalos or digestive system at all.


Freddie with his brother George
Freddie with his brother George
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