Parents’ experiences of neonatal surgery

Leanne

Age at interview: 36
Age at diagnosis: 36

Brief outline: Leanne’s daughter was born naturally and all seemed well. But it soon because clear she was not feeding well. She was diagnosed with Hirschsprung’s disease* and had surgery on her bowel when she was 8 weeks old.

Background: Leanne is married with a son and a daughter.

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Leanne was expecting her second child, a daughter. She had had a difficult pregnancy with hip and pelvic pain, but the delivery went well. Her daughter was born by water birth, and seemed bright and healthy. They went home after a few hours. But once home, the baby was sleeping a lot, not feeding well and vomiting a lot of mucus. So Leanne and her husband grew concerned and took her to see the midwives at her local GP, who advised that she should go straight back to hospital. 

In hospital, paediatricians and surgeons were concerned there was a problem with her bowel, and x-rayed her to try and diagnose the problem. At first surgeons thought they might have to operate to establish what was wrong, but on further examination of the x-rays they decided this was not necessary. They took biopsies for a condition called Hirschsprung’s disease*, the results took a week to come back. Meanwhile Leanne and her husband were able to take their daughter home to wait for the results and next steps.

As their daughter’s bowel was not working properly, and she wasn’t able to poo, Leanne and her husband were taught how to do wash-outs of her bowel. But her condition deteriorated at home so they went back to A&E after a couple of days and decided to stay in hospital until the results of the biopsies came through. After a week, Hirschsprung’s disease was confirmed. Their daughter was not able to have her surgery until she was 8 weeks old, so she was cared for at home with support from community nurses.

Their baby’s surgery was 5 hours long. She stayed in the hospital for a few days to re-establish breastfeeding and then she was able to go home. Leanne said it was very challenging looking after small baby, post-surgery, in the early weeks. At first she went for weekly check- ups with the surgeons at the hospital but these were soon spread out to fortnightly as she recovered. Leanne was interviewed when her daughter was just a year old. She has been developing well, is attending nursery and appears bright and well. The next challenge will be potty training in a couple of years’ time.

* 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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