Parents’ experiences of neonatal surgery

Fiona & Mike

Brief outline: Fiona and Mike’s daughter was diagnosed with an exomphalos*. After birth she developed several complications and was in hospital for the first 10 months of her life. But she has recovered well and is now 7 years old and thriving at school.

Background: Fiona age 36 is a childminder. Mike aged 34 is a salesman. They are married with two children.

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Fiona and her husband Mike were very excited to be expecting their second child. Delays in starting antenatal care meant that they did not have a scan until 20 weeks which revealed their daughter had an exomphalos*. They were referred to a specialist surgical hospital for further scans and tests during the rest of Fiona’s pregnancy. They discussed with surgeons whether to have a natural delivery or caesarean, and because the exomphalos was not too large, planned for a natural delivery. Fiona went into labour at 37 weeks and gave birth to her daughter naturally. She was immediately transferred to the specialist hospital where she had a silo fitted and surgeons planned a staged repair which involved putting a mesh over the top of the wound once the organs had been put back inside the abdomen. She did well for the first couple of weeks, but then she started to have cardiac arrests, her body seemingly unable to cope with the speed of the closure.

Their daughter was transferred to neonatal intensive care unit (NICU)* and had several furthers arrests over the following months. In the short term doctors identified that she was allergic to milk so they put her on total parenteral nutrition (TPN)* but it was not until she was 7 months old that the real cause of the cardiac episodes was diagnosed. She had a condition called tracheomalacia*, or floppy windpipe, which would need further surgery to correct. Although she came home briefly, she regularly needed emergency admission back into hospital when her oxygen levels dropped. She had surgery on her windpipe when she was 7 months old, and although she remained in hospital for a further 3 months, this operation did resolve her feeding and breathing issues. 

At the time of the interview Fiona and Mike’s daughter was 7 years old and attending primary school. She was discharged home age 10 months old, and went back in for her final exomphalos closure surgery just before she started school. She continues to experience some symptoms associated with the exomphalos, such as hypermobility, but it is not affecting her daily quality of life at all. She has made up all the developmental ground she missed in the early months, and is thriving at school and home. 

*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.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

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