Parents’ experiences of neonatal surgery


Age at interview: 23
Age at diagnosis: 19

Brief outline: Shanise was pregnant with her first son when at the 12 week scan she was told he had gastroschisis*. He is now 4 years old.

Background: Shanise is an insurance consultant. She has one son.

Audio & video

Shanise was pregnant for the first time when she went along for the 12 week scan. The sonographer picked up that her son had gastroschisis*. She was referred from her local hospital to a hospital with a specialist paediatric surgical team. At 20 weeks she met the surgeons who would be looking after her son. They explained to her what would happen and she was shown around the neonatal intensive care unit (NICU)* where her son would be cared for.

She was induced, and gave birth to her son naturally. He was taken immediately to NICU where doctors stabilised him. Shanise wasn’t able to hold him until he was two days old. His first operation took place on the NICU to make the hole in his abdomen larger, so his bowel could go back in. It took a week to ten days to get his bowels back inside his body, and then the focus was on increasing his nutrition. He was allergic to milk so had to have a special formula. When he was 6 weeks old, her son was well enough to come home. It was a couple of days before Christmas, and he was able to meet his family. 

But then problems developed with his bowels again – they were blocked and so he had to go back into hospital. He had a severe infection and had to have another operation to unblock his bowels. This time he was in paediatric intensive care (PICU)* for 6 weeks, and in hospital for 4 months in total. Shanise was able to stay in hospital accommodation, so she could be with him, but it was a long way from home and she was very isolated. When he was 6 months old, he was finally well enough to come home. At the time of the interview he was a bouncy 4 year old boy. He has annual checks but is thriving. 

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.

*Paediatric Intensive Care Unit (PICU)
PICUs care for children and infants requiring high levels of care, in particular breathing support with a ventilator (breathing machine).


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