After 6 1/2 long years of trying for a baby, we were delighted to find out that I was pregnant but anxious as the path behind us had been such a rocky one. So, when we found out that our baby had an Exomphalos Major at the 12 week scan, it felt so unfair. We were told that the Exomphalos was 'giant' and they thought it contained the liver, bowel and stomach. It was recommended that I have a CVS immediately to test for chromosome abnormailities and we decided to go ahead with it. The midwife's last words as we left the hospital that day were "Think positively. I have a
feeling we are going to be seeing a lot of each other over the next few months". We
clung onto these words and how right she was!

We then had to endure a horrendous weekend waiting for the results. It was the worst weekend of our lives. I stayed in bed for the whole weekend crying my eyes out whilst Fran talked to friends who are doctors to try and find out more about our baby's problem. Monday afternoon came and the midwife called with the great news that the chromosomes were normal. What a relief! The bond with our baby became even stronger and we resolved to think positively from that point on.

I was scanned 4 weekly until I was 32 weeks pregnant and weekly thereafter. The pregnancy was a roller-coaster with us lurching from joy at the fact that I was pregnant to despair at the prospect of something going horribly wrong. We tried hard to think positively and enjoy the pregnancy. At each scan, we became more reassurred that there were no other defects although the hospital was always very clear with us that they couldn't be 100% sure until after the baby was born. The Exomphalos was classed as 'major' and the surgeon was unsure as to whether he would operate within a few days of birth or wait several months. The sonographers, midwives and consultants all treated us with such care and sensitivity at each scan. I began to look forward to the scans as it was a chance to see our baby and see how he was developing.

Whilst a vaginal delivery had been considered as an option, I was advised to have a c section to maximise the chances of the membrane remaining intact. I was relieved to be told this as I had been concerned about the baby becoming distressed during a vaginal delivery. As it turned out, he was breach anyway, so a c section was definitely the right option.

Seth at 2 days old following his operation

We returned 2 days later and Seth David Hugh Kirke arrived at 10.14 on Wednesday 30th November 2005 weighing 6lb 1 oz. Delivery was completely straightforward and the membrane of his exampholos thankfully remained intact. I caught a quick peak at him before he went to neo-natal. I was surprised that I didn't feel upset at him being taken from me but the sense of relief that he was well and healthy was so great that it wasn't an issue.

My husband went to neo-natal and came back with photos and descriptions of him. He was breathing by himself and looked very healthy. I was able to visit him later that day and we were so pleased to be able to have our first cuddle. Seth looked absolutely beautiful. We felt so lucky to have a healthy boy; we barely noticed his Exomphalos as we were so focused on how gorgeous he was.

The surgeon saw Seth on the day he was born and suggested an early operation as the Exomphalos was slightly smaller than expected and there was a small amount of skin growing up the sides which could make closure easier. The surgeon warned us that he may not be able to join the muscle in which case he would join the skin and a follow up operation would be required when he was older. Two days after Seth was born, the operation took place. We were terrified about him undertaking such a big operation but knew we had no choice and were grateful that the operation was taking place so early on in his life. We also had complete faith in the surgeon and his team.

Thankfully the operation was a success and the surgeon managed to put the organs back in and close the stomach wall using muscle. The surgeon was able to see that all the internal organs were in good working order and he took the opportunity to remove his appendix. We went to see Seth an hour after his operation. He was on a ventilator and his scar looked sore. We were relieved that the operation had gone so well but this was probably the hardest part for us as Seth looked so uncomfortable. Twenty four hours later, Seth was taken off the ventilator and was starting to look much better. We felt in awe of our son for dealing with everything so well. He was taken off the morphine and slowly expressed breast milk was given via a nasal gastric tube. He did not have any problems tolerating his milk and this was steadily increased.

Seth at seven months

Since then, Seth has continued to do well. Hiccups along the way have been a viral infection that had him re-admitted to hospital for three days and feeding issues; he has suffered with reflux and vomiting although these are under control with the help of medication. His weight gain, like so many Exomphalos babies, has been slow but feeding gets better with each week that passes.

It's been quite a journey but we are delighted that our son is here with just a war wound to show for his tricky start to life. He is now seven months old and an absolute joy. He has two teeth, is starting to sit up and has been rolling over for a couple of months now.

We would like to thank everyone at The Queen's Medical Centre University Hospital, Nottingham for the great care and support they have given to us. We can never thank them enough.