Parents’ experiences of neonatal surgery

Barbara

Age at interview: 44
Age at diagnosis: 38

Brief outline: Barbara was pregnant with her second child when the 12 week scan showed that she had gastroschisis*. She spent 6 weeks in hospital, but is now a healthy 6 year old.

Background: Barbara is a university lecturer. She is married with two daughters.

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Barbara was expecting her second daughter. When she went for her 12 week scan, they discovered that her daughter had gastroschisis* and would need surgery after she was born. Barbara had a difficult pregnancy. In addition to worries about her unborn daughter, she felt very unwell and tired, and was diagnosed with an irregular heartbeat. So doctors were monitoring her closely. Barbara and her husband had meetings with a surgeon during her pregnancy and had seen round the neonatal intensive care unit (NICU)*, but there was still a great deal of uncertainty. Doctors were not able to predict exactly how long their daughter would need to be in hospital for. 

In the end Barbara was induced and gave birth to her daughter naturally. She was transferred to the nearby children’s hospital where she was put on the NICU and stablised. It was several hours later before Barbara could go and see her. She was in an incubator and her bowel had been put in a silo, suspended above her body to try and encourage the bowel to start moving back into her abdomen. She had a rocky time in NICU – the first attempt to close her stomach did not go well. She had several operations to put lines in for feeding and medication, and she developed infections several times. Juggling visiting hours, while recovering from the birth and looking after her older daughter, who was 6 years old at the time, meant that it was a really intensive and difficult time for Barbara and her husband.

At 6 ½ weeks, Barbara’s daughter was well enough to come home. However she still had reflux and feeding and sleeping was difficult for a few years. Now the challenges of her early months are far behind them. At the time of the interview Barbara’s daughter was 6 ½ years old, active, healthy and thriving in school. Her scar is barely noticeable and she has only mild symptoms from her reflux. 

*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.

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