Parents’ experiences of neonatal surgery

Nicky

Age at interview: 39
Age at diagnosis: 39

Brief outline: Nicky was expecting her first baby. He was born very early, aged 24 weeks and developed complications that required bowel surgery.

Background: Nicky is a lecturer in dietetics. She is married with one son.

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Nicky’s son arrived unexpectedly and very early, aged 24 weeks and 3 days. He weighed 700 grams and was immediately taken down to the neonatal intensive care unit (NICU)*. He was stable for a few days but then started to develop complications. He was on a ventilator to help his breathing and developed digestion problems. His abdomen became more and more distended and doctors decided that he needed surgery. He was in a general hospital so needed to be transferred to a hospital that had specialist paediatric surgical facilities.

He was transferred and Nicky and her husband were able to stay in a hospital charity house on the hospital grounds to be near their son. Doctors were concerned that he had developed a condition called necrotising enterocolitis (NEC)* and would need a section of his bowel removing. They met the surgeon who explained what she was going to do. When the surgeons operated they found that his bowel was blocked with curdled milk, and there was no NEC, which was good news. However, he did not recover well and developed repeated episodes of sepsis (infections). Eventually doctors worked out that he was reacting negatively to the milk he was being fed. Giving him a different kind of milk, that did not contain cow’s milk, improved his digestion and he was eventually able come home, aged 4 and a half months. 

* 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.

*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. 

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