Parents’ experiences of neonatal surgery

Amy E

Age at interview: 32
Age at diagnosis: 29

Brief outline: Amy was expecting her first child when her 12 week scan picked up that her daughter had gastroschisis*. She was born at 37 weeks and needed two operations. She is now three and doing well.

Background: Amy is a police officer. She is married with one daughter, expecting a son.

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Amy was expecting her first child. She had a feeling that things were not right, and her suspicions were confirmed at the 12 week scan that showed her baby had gastroschisis*. She was referred to the hospital with a specialist paediatric surgical team closest to her, but it was a two-hour journey away. She had a stressful pregnancy with regular scans.

At 37 weeks doctors decided it was time to deliver her baby, and she was induced. Her daughter was born and taken immediately to the neonatal intensive care unit (NICU)* for assessment. The surgeon soon came to tell Amy that her daughter’s condition was worse than they had feared and she required immediate surgery to widen the hole in her abdomen to allow her organs to move back into her body. She was only a few hours old. This first surgery was a success, and Amy’s daughter was returned to NICU. But she was still very poorly, unable to feed properly and on total parenteral nutrition (TPN)*, for several weeks. When she was a week old she had another setback and needed further surgery. Amy said the consultant surgeon flew back from South Africa to operate on her daughter, and tried an experimental procedure which was successful. Amy’s baby started to make progress and was able to start having milk when she was about 4 weeks old. But progress was slow and it was another 5 weeks until she was able to go home. Amy was able to stay in hospital accommodation, as it was a long journey from home. 

Amy’s daughter progressed from NICU, to high dependency and finally to the special care ward. At 6 weeks old doctors felt that she was well enough to be discharged. Although Amy still takes her for regular check-ups, her daughter is doing very well. She was 3 years old at the time of the interview and due to start school in a few months.

*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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