Alison & Martin

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.

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.

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.

Martin and Alison reflected back on the journey they took with their son who had an exomphalos, over 20 years previously. It wasn’st an easy road, but was definitely worth it.

Alison felt that her hospital had the surgeons for the exomphalos operation, but didn’st really know how to investigate her son’s ongoing problems.

Alison and Martin found the conversation with their surgeon unhelpful. She knew that every case was different, but would have liked more information about what to expect.

Alison and Martin’s son had exomphalos and is now grown up. They reflected back on growing pains he developed in his teens, and how he overcome his self-consciousness of his scar.

Alison’s son had an exomphalos, and she was induced. She found the crowds at his birth invasive.

Alison’s son had exomphalos and then developed reflux when he was a couple of months old.

Her son is now grown up, but Alison still remembers clearly the moment when she was told there was a problem and he would need surgery.

Alison remembers how bluntly the doctor delivered the test results and immediately offered them a termination.

Alison found it hard not knowing whether her son was likely to survive the surgery he would need.

Alison describes how she and her husband were told it wasn’st clear if their baby was going to be able to survive.