Parents’ experiences of neonatal surgery

Ally

Age at interview: 37
Age at diagnosis: 37

Brief outline: Ally’s second son was diagnosed with gastroschisis* when she was 12 weeks pregnant. He had surgery when he was 6 days old, and is now thriving.

Background: Ally is a probation officer. She is married with two sons.

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Ally was pregnant with her second son. The 12 week scan picked up the possibility that he might have gastroschisis*, but she and her husband had to wait for another few weeks for a second scan to confirm the diagnosis. They were allocated a specialist midwife, and referred to a larger hospital with a paediatric surgical team in their closest city. Ally was scanned regularly for the rest of her pregnancy, to monitor the baby. Her new surgical and medical team at the second hospital spoke to her about what to expect once her son was born, and she was given a tour of the neonatal intensive care unit (NICU)*. She was advised she could give birth naturally, but doctors wanted to induce her three weeks early, as there was a higher risk of her son being stillborn.
 
Her son was born naturally and was taken straight to NICU to settle him in. The surgeon assessed him, and put his exposed bowel into a silo*, from where gravity would help it fall back into his abdomen. Ally soon found a routine of visiting her son several times a day, doing what care she was able to, even though he was in an incubator. He was stable and went in to have his surgery to close up his abdomen on day 6. But the night after his surgery he was very unwell, and Ally and her husband were told he was in a critical condition. However, after a worrying few hours, his condition soon improved. He was moved out of NICU when he was 2 ½ weeks old.
 
The hospital was over half an hour’s drive away from home. Ally was able to get a room in Ronald McDonald accommodation (for parents) in the hospital, where she stayed for the 4 ½ weeks that her son was in hospital. Her toddler was able to visit as well, with Ally’s mum who was looking after him.
 
By 4 weeks Ally’s son was eating and digesting his food well enough to be allowed home. Unfortunately his wound developed an infection, and several weeks later he had to go back into hospital, and have a second surgery. He was 7 ½ months old at the time of the interview and doing well, although still going back to the hospital for regular checks.

*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.

*Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

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