Parents’ experiences of neonatal surgery

Joanne

Age at interview: 41
Age at diagnosis: 34

Brief outline: Joanne’s first daughter was born healthy, but at 10 weeks old became seriously unwell. She suffered a blood loss to her bowel, and had large section removed. She is now 7 years old, living with the complications of a short bowel.

Background: Joanne is married with three children. A quality assurance manager in the pharmaceutical industry, she is now a full time carer.

Audio & video

Joanne was expecting her first child. Everything went well with the pregnancy, although there were concerns on the scans about a 2-vessel cord, and her daughter was born healthy at 39 weeks. She was sent home the same day, and was eating and sleeping well for the first few weeks. But when she was 10 weeks old, she became unwell very quickly – experiencing convulsions and turning blue. She was rushed in an ambulance to their local hospital, where doctors stabilised her, and then prepared to send her to a specialist hospital which could offer paediatric surgery and neonatal intensive care facilities, to care for her and try and diagnose what was wrong. 

She underwent many tests, and it took several days for the doctors and surgeons to work out what the problem was. Surgeons identified that her bowel was necrotising and had to perform emergency surgery, on a Sunday evening, to remove the infected sections. At this stage they also feared that she had suffered brain damage and doctors were not clear what her chances were. But a MRI scan showed her brain was fine, so the main focus was the bowel. Surgeons performed another surgery to give Joanne’s daughter stomas and join the remaining bowel together, but as it was under 50cm long. Joanne and her husband were told she would need feeding with total parenteral nutrition (TPN)* through a central line, for the rest of her life.

Joanne’s daughter stayed in hospital for a total of 5 months – she had to have further surgeries to put the central line in, and had some infections. Joanne was able to stay with her in hospital. But once she was stabilised the TPN was just necessary overnight, she was allowed to go home. Joanne’s daughter was 7 years old at the time of the interview. She has a permanent central line fitted which is used every night to feed her TPN. She has regular follow up with the gastroenterologist, and Joanne can take her into the hospital where staff know her well, if she is worried about infections or any other aspects. But she is attending main stream school and hitting all her developmental targets. 

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

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