Parents’ experiences of neonatal surgery

Lucy & Jason

Brief outline: Lucy and her husband Jason’s son was diagnosed with Hirschsprung’s disease* shortly after he was born. He needed several surgeries and currently has a stoma.

Background: Lucy is 33 and married to Jason aged 48. They have one son.

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Lucy and her husband Jason were expecting their first son. He was born at 43 weeks by an emergency caesearean. He seemed well at first, but on the second day he started to vomit green bile. Nurses took him for an x-ray and they realised there was a problem. He was soon diagnosed with Hirschsprung’s disease* and Lucy and Jason were told he needed an operation to remove the section of bowel that was not working properly. But not for a few weeks, until he was bigger and stronger. So in the meantime, were taught how to wash out his bowel, as he could not poo properly, and were able to take him home for a few weeks until he was big enough for surgery. 

When he was 6 weeks old he was called back in for surgery. While Lucy and Jason had had meetings with the surgeon, but he was not able to tell them how much bowel would need to be removed until after the operation. In the end it was between 15-20cm. He recovered well from the operation and was sent home aged 7 ½ weeks. He made a good recovery and all seemed to be going well until he picked up a stomach infection when he was 1 ½ years old which was the trigger for further bowel problems. He suffered from a painful bloated stomach and it became clear that there was an intestinal blockage. He was admitted to hospital for bowel wash-outs and medication. He was also given botox injections to relax the sphincter, which only worked in the short-term. Surgeons suggested that he have a stoma* fitted for a few months to give his bowel time to rest and heal. This worked very well and he coped very well with it. When the stoma operation was reversed he again developed problems, so at 3 ½ years old he had a further operation to reinstate the stoma. At the time of the interview, their son was 5 years old and thriving at school. While there is discussion with the surgeons about trying to remove the stoma, Jason and Lucy do not feel there is any rush at the moment while their son’s quality of life is so good.

*Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.

* Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.

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