GEEPS logo

Ryan just after he was born

I went for my first scan at 20 weeks with a friend as Dave my partner, was in the Army at the time and away on exercise. I had my money for the pictures and was very excited at seeing my first baby on show! I had my scan and got the pictures and then the radiographer turned and said very casually, I'm going to send you to Bath as I can't quite get all the measurements that I need

My friend and I made a casual joke of it and it still didn't register when she said I have an appointment for you the next day at 10.00am. I attended the next day oblivious to the fact that something was wrong. After 5 hours and 10 scans and filling and emptying my bladder and feeling pretty sore, they eventually called a surgeon to have a look. He was unsure, as baby at the time wouldn't move. Alarm bells started to ring at this stage especially when he said that he would refer me to Bristol. I went home in tears not really knowing what was wrong.

Dave was called back from exercise and he and my Mum and I went to the Fetal Medicine Unit in Bristol. We sat and waited 2 hours unsure of the outcome. We were then led through to a room where we met Professor Soothill who put the jelly on, scanned for about a minute and exclaimed, Well it looks like we have an exomphalos! We all looked at each other like exompha what???

When Professor Soothill started to explain what it was and what the implications might be and told us of the possibility of further problems that could accompany this condition, Dave and my Mum’s face dropped. He then explained about testing, and also the decision to terminate the pregnancy as an option. Dave and my Mum went downstairs for a cigarette in shock and whilst they were out, I made the decision at that time to go for a cordocentesis. I knew that I could never terminate the pregnancy, although I fully respect other women who choose this option. Professor Soothill was wonderful during this procedure and joked he was good at this, but never got asked to be part of the darts team!


Ryan in ICU

We all went home devastated, with ears and minds ringing with stats and names of conditions and syndromes that we had never heard of. We also received a Geeps booklet, which would become our lifeline, as the web at this time was very limited.

We waited for the test results and thankfully they came back fine, Ryan also had a heart scan to check for defects and that also came back fine. We visited Bristol Fetal Medicine Unit about once a month and up to that time I was told that I did have the option of a normal delivery.

I did feel very alienated from other expectant mums at anti-natal visits, and my midwife was also struggling to keep up with the chain of events. I would like to praise my midwife Diane as she arranged all the visits to the local hospital to a delivery suite so that I wouldn't feel left out.

At 37 weeks I had my last day at work and had a baby shower and was thankful for all the support that work had given me both in time and support. That afternoon we went back to Bristol and Professor Soothill who had become a great support scanned me and informed me that I was being booked in on the following Monday for a c-section as he was concerned that Ryan was a big baby and was unhappy with Ryan's positioning and the state of the exomphalos.

Being weighted

We went home quite surprised at the news as I had always expected a normal delivery, but I was apprehensive about the following week. Monday came and I was wheeled down to theatre and opted for a spinal so that I could meet Ryan before he was whisked off to SCBU.

A few complications having a spinal, try having a nurse saying to you “Now Miss Thatcher, bring your knees to your chin to expose your spine (whilst lying on your side) I replied “ I don’t mean to be rude but hello there is big bump in the way, and I’ve forgotten what my knees look like!”

This broke the very tense atmosphere, and we prepared for the op, it was a very strange sort of spiritual feeling waiting for a baby to come, and I lost count of the people that were coming in and introducing themselves (Dave later counted 24!)

Ryan was born and I waited for the first cry but heard nothing, he eventually let out a screamer and we knew he was here, apparently the surgeon said he was asleep when he pulled him out, and we woke him up!

We had a quick cuddle and at 9lb 6oz he was a good weight. His exomphalos was then wrapped in cling film/bubble wrap and he was whisked away with Dave in tow. I was then stitched up and left in the recovery room, the only criticism was that ½ an hour later, another woman was wheeled in with her baby and left in the same room, which I did feel was insensitive.

Ryan was then visited by Dr Cusick who did his operation and a couple of hours later he was wheeled under the road to the old Children’s Hospital where he was operated on. The operation did take longer than planned, and I was eager to see him.

Dr Cusick managed to put the entire bowel back in a 4cm opening(his exomphalos was about 11cm in diameter), which luckily was undamaged and do a primary closure. He then spent 2 days in ICT and was then upgraded to next door – High Dependency Unit.

"Sorry about the bubble bath Mum"

Ryan recovered pretty quickly and after a week he started some very small feeds of expressed milk via a tube. The only blip to his recovery was that twice he had what was classed an ‘episode’ where he stopped breathing for no apparent reason, but was quickly revived. His heart was scanned again but no problems were detected and we still are unsure what caused these problems. I was there when he had one and it was the scariest thing I have ever had to experience. Up until the day he arrived I had felt I was in a dream world and people would say you must be worried, to which I would reply, everything is going to be okay. Ryan was discharged after only 2 weeks and we took him home.

Since then he has done extremely well and the only problems we have had are loose bowels to about the age of 3 ½, and having to have soya milk from about the age of 1 year old.

He now tolerates dairy products and eats like a horse. He does have occasional tummy ache and normal tummy bugs seem to affect him badly in the sense that he complains about his scar site, which is currently being monitored.

We are very grateful to everyone who helped our little boy, and my heart fills with joy at every milestone Ryan makes. I am not a religious person but do feel as if someone was watching over us through an awful experience that I wouldn't want to wish upon anyone. But we have come through and we have a beautiful, bright and cheery boy who does have a potbelly, has his ‘bitten by a shark scar’ and not much of a belly button, but we would’t have him any other way!

Ryan aged 5