Parents’ experiences of neonatal surgery


Age at interview: 32
Age at diagnosis: 26

Brief outline: Louise was expecting her first babies, twin boys. At the 20 week scan, one of her babies was diagnosed with a congenital diaphragmatic hernia (CDH)*. He had surgery and is now 5 years old.

Background: Louise is a sales account manager. She is married with twin boys.

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Louise was expecting twin boys. At the 20 week scan, the sonographer identified that one of her babies had a congenital diaphragmatic hernia (CDH)*. Louise and her husband were given some counselling from the fetal medicine consultant and were told that they would have to wait until the babies were born, and then their son would need surgery. Louise developed pre-eclampsia and had a caesarean section operation at 35 weeks. Both babies were taken up to the high dependency unit, although their other son did not need to be there for long as he was fine. 

Louise and her husband were told that their son would need a repair operation on the hole in his diaphragm but had to wait until he was stable and strong enough to cope with the operation. When he was 9 days old, he was strong enough. It was successful and he was transferred to a closer hospital after 4 weeks. He was allowed to come home at 8 weeks old. He had another operation when he was three years old to remove the pig skin that had been used in the original operation to repair the hole. He was 5 years old at the time of the interview, at school and progressing well.

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


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