Parents’ experiences of neonatal surgery

Harry & Michelle

Brief outline: When Michelle was expecting her third son, Harry’s first child, they were shocked when scans picked up that their son had gastroschisis*. He was born at 37 weeks and had surgery. At 3 months old he was home and doing well.

Background: Harry is 41 and a management consultant. He lives with his partner Michelle and has one son. Michelle is 38 and a finance director. She has three sons.

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When Michelle was expecting her third son, Harry’s first child, they were shocked when the 12 week scan identified their son had gastroschisis*, and all of his bowel was outside his abdomen. As they already lived close to a major teaching hospital they did not require a transfer to another hospital to access paediatric surgeons. The following day they met with the consultant who would oversee Michelle’s pregnancy who explained more about the condition. Michelle and her partner met the surgical team at 20 weeks to discuss the options for when their son was born, and were given a tour of the neonatal intensive care unit (NICU)* where he would be cared for. Michelle was scanned regularly – at first every 4 weeks, then every 2 and in the final weeks, weekly. Doctors were keen to balance keeping her son in utero for as long as possible so he could develop, and not keeping him in for too long in case his bowel started to deteriorate. 

Michelle was induced at 37 weeks. Their son was born without complications and immediately taken to NICU where he was stabilised and his bowel (which measured 1.2 metres outside of his body) was put in a silo*. He had his surgery at 5 days, which lasted 5 hours and was a success. He was in hospital for a total of 2 months, as progress in NICU was not straightforward. His wound developed an e-coli infection, at another stage he developed sepsis and for several days his bowel appeared to be bleeding for no discernable reason. He was fed with total parenteral nutrition (TPN)* for several weeks until his digestive system was able to cope with milk. This was built up slowly and at two months he was able to come home. At the time of the interview, he was 3 months old. Michelle had been able to start breastfeeding him and he was thriving. He will need follow up checks at the clinic until he is two years old, but was doing well and enjoying family life with his big brothers. 

An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which, the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

*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.

* Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.


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