Parents’ experiences of neonatal surgery

Amy

Age at interview: 39
Age at diagnosis: 33

Brief outline: Amy’s daughter was diagnosed with exomphalos* when she was 15 weeks pregnant. She was 6 years old at the time of the interview.

Background: Amy is a social worker. She lives with her partner and their daughter.

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Amy was very surprised to discover she was pregnant. She was in her early 30s. She went along for her first scan at 15 weeks, and was told that her baby had a large exomphalos*. The next day she went to see the fetal medicine consultant who confirmed the diagnosis. The research that she had had a chance do on the Internet mostly just frightened her.

She found her consultant very serious and negative. She felt he encouraged/pressured her into having a termination, which she had decided that she wasn’t going to have. The various tests and scans that they went on to have, including a CVS, did not reveal any genetic problems, although the exomphalos was very large; the liver, stomach and bowel were outside the abdominal wall. Amy felt that she missed out on a normal pregnancy, as it became very medicalised with regular scans and tests. She and her partner decided to change hospital, as they were not completely comfortable with their original hospital. Although this meant that Amy would give birth in one hospital and her baby would be taken to another immediately, they felt it was the right choice. She highlighted two features that reassured her it was the best choice for them; one was a leaflet they were handed about abdominal wall surgery, indicating that the staff knew what they were doing, the other a café waitress saying a cheery hello and welcome when they first arrived. They were shown around the hospital and neo-natal intensive care unit. A caesarean was planned, but her waters broke and she went into labour earlier than planned (at 36 weeks), so she had an emergency caesarean operation.

Her daughter was born safely and Amy was able to see her briefly before she was transferred to the specialist hospital where she spent the next 3 months. Amy had to spend two nights on a ward with mothers and their new babies, which she found really hard.

The surgeons used the silo method and performed approximately twelve operations. Amy had to stay in hospital two nights and was then able to stay in a hospital hotel for a few nights so she could be near her daughter. As things stabilised and her daughter came out of intensive care (after 5 weeks), Amy was able to stay in a room with her, which she really appreciated. Her daughter was looked after by the same surgeon throughout, and Amy really liked him – she felt his manner was calm, steady and matter of fact, making no false promises.

Amy’s daughter came home after 3 months. She had to return to hospital for a hernia operation a year later, which Amy found very difficult. But apart from that, she has developed well. At the time of the interview Amy’s daughter was 6 years old. She has no ongoing health issues and is happy and healthy at school. She does not have a belly button, which has been noticed by other children (e.g. in the swimming pool) but it is a mark of uniqueness, rather than something she is bullied about.

*Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord. 

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