Parents’ experiences of neonatal surgery

Pamela

Age at interview: 41
Age at diagnosis: 41

Brief outline: Pamela was expecting her third child. Her son came very early, aged 27 weeks. He developed NEC* and needed bowel surgery.

Background: Pamela is a patent attorney. She is married with three children.

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Pamela was pregnant with her third child. Her waters broke very early and her son was born aged 27 weeks. He was not very well, and the general hospital where he was born didn’t have the facilities to look after him, so he was quickly transferred to a larger hospital which was 30 minutes’ drive away. It had a larger neonatal intensive care unit (NICU)* to care for him. Pamela was also transferred with him. 

He was born with a lung infection and sepsis and needed to be on a ventilator to support his breathing. But when he was a few days old he also developed a problem with his digestive system and doctors thought he had developed necrotising enterocolitis (NEC)*. Pamela and her husband met with the surgeons and their baby was taken for surgery to investigate how much of the bowel was infected and needed removing. Luckily surgeons only needed to remove a small section of his bowel. He was in the NICU for three weeks and then transferred to the high dependency unit and eventually back to their local hospital. He came home at the age of three months and three days. He still needed oxygen for a few weeks after he was home, but at the time of the interview he was 9 months old and making good progress. 

*Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 

* 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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