Parents’ experiences of neonatal surgery

Zoe

Age at interview: 24
Age at diagnosis: 22

Brief outline: Zoe was pregnant with her first child, who was diagnosed with gastroschisis*. Zoe was referred to a specialist surgical hospital 3 hours away. Her daughter was born at 37 weeks and had her operation when she was 6 days old.

Background: Zoe is a nurse. She lives with her partner and has one daughter.

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Zoe was expecting her first child. The 12 week scan showed that her daughter had gastroschisis*. Zoe was scanned regularly and was then referred to a hospital with a specialist paediatric surgical team at 28 weeks. At the first visit, she met with the surgeons and neonatal nurses who explained to her what to expect after her baby was born. The specialist hospital was a long way away, a three-hour drive. Zoe found the rest of her pregnancy very hard, as there was so much uncertainty about how her baby would be when she was born. She and her partner also found it hard not knowing why her daughter had the condition.

Zoe was induced at 37 weeks and she was able to see her daughter only briefly before she was taken to neonatal intensive care (NICU)*. As expected, her daughter had to be transferred to the children’s hospital, which was separate to the maternity hospital, so Zoe did not see her daughter for another 12 hours. She was set up in NICU with a silo and assessed. Surgeons were keen to operate on her bowel as soon as possible, and she had her closure operation when she was 6 days old. The operation was relatively quick – just a couple of hours – and successful, although Zoe’s daughter was very distressed for the first few hours as she was in a lot of discomfort and pain. But she recovered well.

Because the hospital was so far away from home, Zoe was given a room in the Ronald Macdonald house, where she stayed for the full month that her daughter was in hospital. However, her partner had to go back to work and was only able to visit at weekends, so she spent the weeks on her own, with just the occasional visitor. Soon after surgery, her daughter was well enough to start trying to have very small amounts of breastmilk, and was weaned off total parenteral nutrition (TPN)* after 18 days. Doctors built up the volumes of milk very slowly, checking that her bowel was working well, and could cope with the milk. She was soon transferred to the general paediatric ward and after a month she was well enough to go home. Zoe’s daughter was 19 months old at the time of the interview. She has had a couple of follow-ups with the surgeons who are very pleased with her progress. 

* Gastroschisis
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.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

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