Parents’ experiences of neonatal surgery

What is neonatal surgery?

A surgeon’s introduction to Parent’s experiences of neonatal surgery

Being told that your baby will need surgery can be a frightening and worrying experience for parents. We spoke to a paediatric surgeon, Anna-May Long, to find out more about the range of conditions that could mean a baby might need surgery, how those conditions might be diagnosed and what parents might expect in hospital. We haven’t covered heart defects in this website, as we hope to cover it in another website at some point.
The conditions that require surgery early in life represent a real spectrum from those that are relatively minor to some more major, complex conditions. Some conditions are detected during pregnancy, by routine scans, others are not obvious until after the baby has been born, or develop in the early weeks. Here Anna explains the main conditions.
There is another range of conditions that can affect the baby after birth, and can present quite suddenly. These include a condition that affects premature babies in particular, necrotising enterocolitis or NEC, which is an inflammation and infection of the gut. Another is a condition called atresia which is a blockage somewhere in the bowels. Finally hernias in the groin, which can usually develop after birth and generally require only a minor operation to correct.
Some conditions are detectable during pregnancy scans, and parents will be told by clinicians their baby has a condition that will need surgery after birth. Parents will meet with a range of health professionals to discuss the diagnosis, and plan the birth.
Some conditions aren’t detectable until after the baby has been born, or develop after birth.
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Babies who have complications that mean they need surgery will be cared for by specialist staff. Often babies need to be transferred to a specialist hospital after birth. There will be a number of teams involved.
It is not always clear what the progress of the baby will be after their operation. The conditions vary, and while sometimes surgeons will have a good idea about the operation they plan to do, in other situations they will only know exactly what they have to do once they have started operating. There is unfortunately uncertainty at every stage for parents.
In the rest of this resource you can hear parents’ voices, sharing their experiences of the neonatal surgery journey they have travelled with their babies. We hope you find it helpful and answers some of the questions you might have.

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