Parents’ experiences of neonatal surgery

Alix & Antonio

Brief outline: Alix was expecting her first child. He was born after a very long labour at 40+ weeks. It was discovered that he had a congenital diaphragmatic hernia for which he needed surgery.

Background: Alix is aged 33 and a national account manager. Antonio is aged 35. They are married with one son. She is from Northern Ireland.

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Alix was pregnant with her first child. She had an uneventful pregnancy and went into labour at 40 weeks. She had a very long labour and when her son was finally born, he was covered in meconium. A resuscitation team examined him and took him away for tests in the neonatal intensive care unit (NICU)*. Shortly after he was born, when Alix had recovered somewhat, she and her husband were visited by a large medical team, including the pediatrician who told them that their son had a congenital diaphragmatic hernia* and would need to have surgery. As he had been born in a general district hospital, he needed to be transferred to another hospital that had a specialist team of pediatric surgeons. 

Once in the specialist paediatric surgical centre, the baby was cared for in NICU until he was stable enough to undergo surgery. This took over 10 days during which time he was very unwell. But eventually his condition stabilised and he was able to undergo the surgery he needed to repair the hole in his diaphragm. After a few days of recovery, he was transferred back to the general district hospital where he was born, and then finally home. At the time of the interview, he was 9 months old and progressing well. 

* 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.

* Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

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