Hirschsprungs Family Connections

Labour was a bit of a drama with Stephen deciding to appear 3 and a half weeks early and needing an emergency c-section. A baby boy! 7lb 3oz. Welcome to the world Stephen Thomas William Webb. Not suspected anything was wrong we went to recovery. That's when things started to go wrong. We tried Stephen with breast feeding but he wouldn't take. Next the midwife took him and tried to feed him formula. Again he refused his feed. The midwife said i'm just taking him outside to check his colour. She came back in a few seconds later and said he was ok. She tried feeding Stephen again however he still would not feed and once again she went outside to check his colour. I knew something wasn't right and began to panic. This time she came back without him! Stephen had been taken up to the special care baby unit because he wasn't breathing properly and he wasn't feeding. He spent his first week of life in the neonatal unit on oxygen due to a hole in his lung. The hospital thought that the lack of feeding was down to this. They thought it was because he was born early.

 

However a week later he was still not feeding other than by tube down his nose and he had also not pooed. Not even with the glycerine chips they were giving him. His tummy was very distended and they informed us that there was a team coming over from Southampton General to look at him as they think he may have a blockage. An x-ray showed this may be the case and later on the same day Stephen was transferred to Southampton General. This is where the words Hirschsprung's Disease were first mentioned. Never having heard the name before we began to panic. The next day Stephen had a biopsy. He was transferred to the Princess Anne hospital whilst we waited for the results. A few days later we were informed that Stephen had Hirschsprung's disease and he would need a pull-through operation. The operation was booked for just over a week later. Whilst waiting for his operation Stephen began to get poorly. He was bringing up bile and dispite wash outs was still not improving. It turned out he had an infection in his bowel and needed antibiotics. We prayed this wouldn't affect his pending op. Finally the day of the operation arrived.

 

The 5 hour wait was horrible. My husband and I decided to go down to the Southampton Docks to keep ourselves distracted. Eventually we got the call! It was all done. We headed back to the hospital and waited to see the surgeon Mr Stanton who said the operation had been a success and they had removed 1 foot of bowel. They believed they had all the affected part. We breathed a sigh of relief. However or relief soon changed to fear again when 4 days later Stephen began to go down hill. I arrived to see Stephen as usual to find the staff fussing around Stephen. Something wasn't right. Stephen was white with a huge distended tummy. His sats were dropping. He was deteriorating. I held his tiny hand and spoke to him, his heart rate picked up. However when I let go it dropped again. The surgeon on call called me into a room and explained that they believed Stephen had a leak and they needed to get him into theatre asap. My husband arrived from work, we said goodbye to Stephen and they took him down to theatre.

 

This was more terrifying than the first op. After the op. Stephen was transferred to paediatric intensive care sporting an ileostomy. He would have this temporarily for a few months to give his bowels time to heal. We couldn't thank the surgeon enough. Stephen was transferred back to Princess Anne hospital. We learnt how to empty and change his bag. Stephen began to feed properly and finally at 5 weeks old Stephen was allowed home! When Stephen was 5 months old he had the ileostomy reversed. During the 4 months with the stoma we had no problems. They only really began once the stoma was reversed. Constipation being the main problem which caused Stephen to become ill and require a stay in hospital and need a few wash outs. He has had a few stays in Southampton General. However we have managed now to stay away from hospital stays for two years. Although we still have regular check ups, with botox every 3-6 months and sennakot, movicol and the odd microlax we are managing. The prospect of another ileostomy is looming and potty training is not proving easy. However it certainly gets easier as they get older.