Parents’ experiences of neonatal surgery

Matt & Donna

Brief outline: Matt and Donna’s son was born by caesarean. He was fine at first, but then developed digestive problems. Tests revealed he had Hirschsprung’s disease*. He had surgery at 7 weeks, and was 18 weeks old at the time of the interview.

Background: Matt is 35 and a marketing manager. Donna is 34. They are married with two children.

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Matt and his wife were expecting their second child, they already had a daughter aged two. Donna’s pregnancy was unproblematic, and she was scheduled for a planned caesarean section at 39 weeks + 1 day at their local general hospital. Their son was born and seemed very healthy, but his parents and the doctors became increasingly concerned about his health over the next 48 hours. He did not pass any meconium (the important first baby poo) and started vomiting up his milk. The colour turned from white to yellow and then green. This green bile made midwives and doctors very worried and he was transferred to a larger specialist hospital for tests.

Matt and Donna had to face a week of uncertainty as doctors ran tests and x-rays. They were told that the condition could be Hirschpsrung’s disease* or possibly cystic fibrosis. To establish if it was Hirschsprung’s disease or not, doctors needed to take a small biopsy of his bowel and send it for tests. 

After a week of anxious waiting, Matt and Donna were told that their baby did indeed have Hirschsprung’s disease. They were relieved that it was not cystic fibrosis. During their time in hospital, they had been taught the various techniques they needed to know to look after their baby until he was a few weeks older and strong enough for the operation, so they were allowed to take him home. For the next 6 weeks they had to perform daily bowel wash outs, as he was not able to poo properly, and keep a very close eye for any signs of bowel infection.

Their baby was strong enough for his operation when he was 7 weeks old. Surgeons were unable to tell Matt and Donna until after the operation exactly how much bowel they were going to need to remove – it landed up being a long segment. But he recovered quickly and was home in a few days. At the time that Matt and Donna were interviewed, he had been home for 10 weeks and was doing well. 

* 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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