Parents’ experiences of neonatal surgery

Julie

Age at interview: 39
Age at diagnosis: 30

Brief outline: Julie’s second son was diagnosed as having a congenital diaphragmatic hernia (CDH)* when he was 20 weeks old. He had one operation while still in utero, and several more after birth. He is now a thriving 9 year old at junior school, but still has a tracheostomy* and needs 24 hour care.

Background: Julie is an IT administrator. She has four children aged, 11, 9 and four year old twins.

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Julie has four children; an 11 year old, a 9 year old and twins aged 4. When her second son was 20 weeks old a scan picked up that he had a congenital diaphragmatic hernia (CDH)*. Julie was referred to London to a specialist hospital where a surgeon recommended a special balloon treatment to his trachea to try and open up his lungs, which were not developing. He had this through keyhole surgery when just 24 weeks old. His condition immediately improved, although Julie had to continue to travel to London (over 2 hours’ drive away) for regular scans for the rest of her pregnancy.

Her son was born in their local hospital when he was just under 34 weeks old. He was very poorly and had to undergo four operations in his first few months of life. These included a repair of the hernia in his diaphragm, removing a blockage in his colon, a gastronomy* and a tracheostomy*. There were several months when he was very unstable, but doctors finally managed to stabilise his breathing and feeding and he started to improve. However the final tracheostomy operation left him dependent on a ventilator to breathe, which meant that he was not able to be sent home from hospital until there was an overnight care package in place for him, as he needs a nurse to watch over him at night and help him with his breathing. This was not in place until he was almost three years old.

He now lives at home and attends primary school. However, he is still tube fed and he has regular appointments at the local hospital as he has several ongoing health needs. It was discovered that the original balloon operation that he had before he was born damaged his trachea, and so he is facing another major surgery to reconstruct his airways.

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

*Tracheostomy
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing. 

*Gastronomy

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