Parents’ experiences of neonatal surgery

Sally-Anne & Simon

Brief outline: When Sally-Anne was pregnant with her first son aged 20, scans revealed he had an exomphalos*. He had surgery when he was a few days old, which was successful. But he is now 13 and still has digestion problems.

Background: Sally-Anne is aged 34. Simon is aged 33. They are married with three sons.

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Sally-Anne and Simon were expecting their first child. A scan at 12 weeks revealed that their son had an exomphalos* major. Sally-Anne was scanned regularly during her pregnancy and had her son by caesarean at 40 weeks and 2 days. She was able to say hello to him briefly, but then he needed to be transferred to another hospital to be cared for in neonatal intensive care unit (NICU)*.

Their son had his first surgery to close the exomphalos when he was five days old. Although it was successful in getting the organs back inside the body, the skin was not healing well. It was very thin which caused it to break. After a few more weeks in hospital they were able to bring their son home, although they did need to return to hospital every week for check-ups with the surgeons until he was about 5 months old. At three months old he had another minor operation to remove the gortex patch that had been covering the wound, to allow the skin to heal over completely. 

For the first year, he was developing well. Sally-Anne and Simon were caring for him at home. His third operation was at 18 months, which was when all his organs were put back inside and a pig skin patch sewn over this abdominal wall. He was in hospital for a week and this operation was a success. Their son has grown into a strong healthy boy, he was 13 years old at the time of the interview, attending secondary school, and loves football. But he still has several medical issues that affect his daily life, including severe sickness and diarrohea that he is still seeing specialist doctors to try and sort out.

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord. 

* 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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