Parents’ experiences of neonatal surgery

James & Clare

Brief outline: James and his wife Clare had their first son at 40 weeks. He seemed well at first, but over the following weeks his bowels were not working properly, and he was in a lot of pain. It took a few months to get a diagnosis of Hirschsprung’s disease*, and he had surgery. He is now 5 years old and in school.

Background: James is 35 and a policeman. Clare is 40 and a HR consultant. They are married with two sons.

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James and his wife Clare were expecting their first child (when Clare was 35). Although Clare felt well through the pregnancy, there were a few concerns at the 12-week scan. She had an amniocentesis which came back clear, and the rest of her pregnancy was uneventful. Clare chose to have a water birth at a midwifery unit and their son was born at 40 weeks + 2 days old at a healthy weight of 9lbs.

Clare and their baby son stayed for three days in the birth unit before coming home. Midwives did not seem overly concerned that their son had not passed his meconium, nor was pooing regularly. But after they went home, and as the first few weeks progressed, James and his wife grew more concerned. Their son was unable to poo and in a great deal of discomfort. But it was not until his wife Clare went for her 6 week check at the GP that health professionals really took notice. The GP correctly suspected Hirschsprung’s disease* and referred them to a paediatrician the same day. But as their son’s symptoms were not a classic presentation, the paediatricians decided to treat him for constipation rather than run tests immediately. James and Clare had a further 6 months with their son increasingly distressed and unwell before Hirschsprung’s disease was diagnosed. Their son was in hospital with a viral infection and James insisted that a surgeon review their son. Hirschsprung’s disease was finally diagnosed, and an operation planned.

James and Clare had a two week wait for surgery and then their son went in for his operation to remove the affected section of bowel. The surgeons could not be sure before operating if their son would need a stoma, but in the end the surgery went very well, with the surgeon removing about 30 cm of affected bowel. He made a good recovery and was soon discharged home. The following few months were very tough, however, as he suffered very sore nappy rash. 

At the time of the interview their son was 5 years old, in school and coping remarkably well although nappy rash is still an issue and bowel infections (enterocolitis) are still some thing that James and Clare need to keep a close watch for. James and Clare had a second son (two) years ago.

* 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.

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