Parents’ experiences of neonatal surgery

Vanessa

Age at interview: 31
Age at diagnosis: 30

Brief outline: Vanessa’s second son was born 9 days early. He seemed fine at first, but developed digestion problems, diagnosed as Hirschsprung’s disease*. He had surgery when he was 10 weeks old. He was 16 months old at the time of interview, and thriving.

Background: Vanessa is a bank complaints manager. She is married with two sons.

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Vanessa was expecting her second son. The pregnancy was normal and her son was born 9 days early and seemed very well at first. She and the baby were allowed home the same day, as their hospital was close by and there were no initial concerns. However during the first night, Vanessa became increasingly concerned about her new baby. He had not had his first poo, was not feeding well and vomiting a lot. During the first day the vomit turned progressively more yellow and then green. 

They were due to go back to hospital the next day for an injection, so Vanessa asked midwives to have a look at him. Staff found that he had a blockage in his bowels. This was cleared but doctors wanted to find out what caused it, and so ran a lot of tests. The results took a week to come back, during which time her son was kept in hospital, being given regular bowel wash-outs. Vanessa learned how to do these too. He appeared well, so Vanessa was shocked when surgeons informed her that the biopsy tests showed that he had Hirschsprung’s disease* and would need surgery. 

Vanessa was allowed to take her son home, and gave him wash-outs twice a day until he was 10 weeks old and big and strong enough for surgery. During this time, Vanessa and her husband were supported by a specialist surgical nurse, who was on hand to answer any questions or worries. Their son went back into hospital for surgery – they were expecting the operation to last 6 hours, but it actually took a lot longer. Surgeons had to remove about half of his colon - the section affected by the disease and not working properly. Vanessa stayed in hospital with him for 6 days after the operation and then he was allowed home. One year on, he was doing brilliantly.

* 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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