Necrotising enterocolitis (NEC): Getting ill and diagnosis

Babies born prematurely are at risk of developing a serious bowel condition called necrotising enterocolitis (NEC). If a baby has NEC their bowel becomes infected and severely inflamed. This condition is treated by resting the bowel and antibiotics. If this treatment does not work, surgery may be needed to remove areas of the bowel that have developed holes or the tissue has died. We talked to parents of three babies who developed NEC after being born prematurely.

Nicky’s son was born at 24 weeks and was in neonatal intensive care (NICU)* for several weeks. He was transferred from their local hospital to a hospital that had a NICU. After a couple of days when his condition seemed to improve, he then developed a series of problems and setbacks, including serious infection in his blood-stream, problems with his breathing and feeding, that lasted for weeks.

Nicky remembers the date when her son had his first really bad day. NICU staff stopped his intravenous feeding and were talking about the possibility of NEC.

Age at interview 39

Age at diagnosis 39

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Ten days later, staff were worried enough about Nicky’s son to start phoning around specialist pediatric surgical units to find somewhere to send him for surgery. Nicky knew that NEC was serious, but didn’t look up any facts and figures about it as she thought it would be more worrying to do that.

I didn’t really want to be confronted by statistics and death rates and because I knew it was serious and I knew it could be, you know, life threatening and I didn’t really want to see numbers at that point that wasn’t helpful.

When she was told he needed to be transferred she wasn’t surprised, but it was an upheaval.

Pamela’s son was born 13 weeks early and was cared for in a NICU. His condition went up and down, and she knew he was very poorly. But it was still a shock to go into the unit one morning and see his tummy swollen and very dark in colour. The surgeon was called to speak to her and she was told he needed immediate surgery.

Pamela’s son looked dreadful, his tummy was dark and swollen. The surgeon came and explained to her the operation her son would need.

Age at interview 41

Age at diagnosis 41

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Victoria’s son was also born very early. He did well for the first few weeks, but then developed NEC. He was transferred to the specialist pediatric surgical centre in the nearest large city, and treated with bowel rest and antibiotics. Like Nicky, she found it very unsettling to be moved to a new hospital after having built a good relationship with staff at the first hospital. Victoria’s son avoided needing surgery at first, but when he took another turn for the worse a few weeks later, he needed an operation. It turned out he had tight narrowing in his bowel caused by scarring from his past episode of NEC. This narrowing is called a post-NEC stricture and he needed surgery to remove the narrow area.

Victoria was devastated when she thought her son had NEC again. He hadn’st, but he needed surgery to remove the scar tissue from his previous episode.

Age at interview 31

Age at diagnosis 31

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*Footnote definition:

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.