Parents’ experiences of neonatal surgery

Alison & Martin

Brief outline: Their son was diagnosed with exomphalos* during a routine scan in pregnancy when Alison was aged 25. He is now twenty-six years old and Alison reflects back on their experiences.

Background: Alison is aged 51 and married with one daughter and one son. Her husband Martin, aged 55 is a football coach.

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Alison was pregnant with her second child. She and her husband Martin and two year old daughter were living in the north-east of England, a long way away from their families. During a routine antenatal scan, doctors discovered that her son had an exomphalos*. Alison had some extra scans but was not advised to have a caesarean section. Her son was born by a normal delivery at 39 weeks and taken to a neonatal intensive care unit (NICU)* in a different hospital for surgery. Doctors operated on him straightaway and he was kept in NICU for 10 days. Their son recovered well from his surgery and was soon sent home. When he was several months old, he developed digestion problems, diagnosed as reflux. He was prescribed medication, but eventually grew out of those symptoms. 

Alison was interviewed with her husband, Martin, over twenty years later. Their son is now a fit and healthy young adult and their experiences of exomphalos are a distant memory. Their son experienced a short period of (growing) pains in his early teenage years, but did not have surgery to try and correct this and the pains soon passed.

*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. 

*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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