Parents’ experiences of neonatal surgery

Hayley & Thomas

Brief outline: Hayley and Thomas’s first son was born with exomphalos*. Born at 39 weeks, he made good progress for the first 5 ½ months. But he had several complex health issues and infections. He passed away aged 7 months in hospital.

Background: Hayley is 33 and a childminder. Thomas is 35 and a business manager and they are married. Their son passed away aged 7 months.

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Hayley had a miscarriage and an ectopic pregnancy previously so she and her husband Thomas were nervous when they approached their 12-week scan at their local hospital. The sonographer identified that there was a problem with their baby’s stomach, either an exomphalos* or gastroschisis*, and referred them to a fetal medicine doctor at the specialist teaching hospital closest to them. It was a Friday so they had an agonising wait over the weekend. 

On the Monday morning they travelled up to the specialist hospital, where their care would now be based. They had more scans and met with fetal medicine doctors who explained the diagnosis and ran some more chromosome tests. The results from these came back a week later, and were not indicative of any of the rare congenital conditions sometimes associated with exomphalos, such as Edward’s syndrome*. Hayley had regular scans through the rest of her pregnancy but was advised that she could give birth naturally. She and her husband met with the surgeon and looked around neonatal intensive care unit (NICU)* to prepare themselves for where their baby would be cared for. 

Hayley was induced when she was 39 weeks pregnant, and their son was born weighing 5lbs, 6oz. He was taken straight to NICU where he was stabilised. Surgeons decided to follow the ‘paint and wait’ treatment, which meant no surgery was imminent, but it was on the cards at several points. Their baby son’s health went up and down dramatically. His exomphalos was one of several issues including hypoplasy*, hypertension (high blood pressure), a heart defect, hernias* and a severe reflux. During the first week he contracted sepsis and was on strong antibiotics, but then he rallied and did relatively well for 5 months, feeding, growing and developing. But at 5 months he picked up another infection and never really bounced back. His condition deteriorated, his breathing grew more and more labored and he finally had to be ventilated. But doctors and nurses kept fighting for him until the last – he passed way with his family around him aged 7 months old.

Hayley and Thomas were interviewed 5 months after their son’s death. Hayley was having regular bereavement counselling at the hospital and they had also had a debrief/follow up meeting with the medical team in charge of her son, which they found very helpful. 

*Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord. 

* 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.

* Edwards’ Syndrome
A serious genetic condition, caused by too many chromosomes, also known as Trisomy 18.

* 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.

* Hypoplasy
Incomplete development or underdevelopment of an organ or tissue.

*Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

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