Parents’ experiences of neonatal surgery

Luke & Angie

Brief outline: Luke and his wife Angie’s third child was born at home. After 24 hours he was vomiting and had not passed meconium. They took him to hospital where he was diagnosed with Hirschsprung’s disease*. He had bowel surgery at 2 ½ months and is now doing well.

Background: Luke is 40 and a design consultant. Angie 39 and is self-employed, and home schooling their children. They are married with two daughters and one son.

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Luke and his wife Angie were thrilled when their third child, a boy, was born at home. He seemed to be well at first but over the first 24 hours they became increasingly concerned about him. He had not passed his meconium and was vomiting bile. When he vomited green bile at around 36 hours old, they decided it was time to take him to hospital. They initially went into their local hospital but were soon transferred to a more specialist centre because he needed to be in neonatal intensive care (NICU)* while doctors ran tests.

Their son was diagnosed with Hirschprung’s disease*, and Angie and Luke were told that he would need to be allowed to grow for 2-3 months before he was strong enough for the operation. He stayed in hospital for a week while the tests were run, and they were taught how to perform his twice-daily bowel washouts. Then Luke and Angie were allowed to take him home until it was time for his operation. While he was at home they received regular visits from the health visitor and had to call into NICU regularly with his weight progress, and go for check-ups. At first their son had some difficulty establishing breastfeeding, but a consultation with a lactation expert helped them overcome these difficulties.

When he was 2 ½ months old, their son had put on enough weight to be able to have the operation. It was 5 hours long, but a success. Only 10cm of bowel needed to be removed. Their son was 19 months old at the time of the interview and progressing very 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.

*Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

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