Parents’ experiences of neonatal surgery

Emma

Age at interview: 30
Age at diagnosis: 28

Brief outline: Emma was pregnant with her second son when she became worried that he was not moving. She had an emergency caesarean at 33 weeks. He was diagnosed with oesophageal atresia with trachea-oesophageal fistula (OA with TOF)* and needed immediate surgery.

Background: Emma is a business management officer. She is married with two sons.

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Emma was expecting her second son. Scans did not pick up anything untoward. But at 26 weeks she had reduced movements. She saw a midwife, who didn’t scan her or put a monitor on, and said everything was fine. But Emma felt that things were not right. One evening shortly afterwards, when she was 33 weeks pregnant she got very worried that she had not felt any movements, so went to the hospital. She was scanned and given an emergency caesarean. Her son weighed just 2lb 12oz and was diagnosed with oesophageal atresia (OA) with tracheooesophageal fistula (TOF)* He was sent for immediate surgery at the nearby children’s hospital. His oesphagus did not go into his stomach so needed be corrected immediately. Tests also showed that he had a heart condition called TOF.

The operation was a success but he was very poorly and took several weeks to start to put on weight and wean off the breathing machine. He was eventually discharged at the age of 7 weeks and came home. But life at home was tough – he picked up lots of infections, and his heart condition started to affect him seriously. He was in and out of hospital and had frequent spells when his oxygen levels would drop to dangerous levels. So he went back into hospital for open heart surgery when he was 6 months old. The operation was a success, but again he took a long time to recover. He was in hospital for a further 8 ½ weeks. Although he still needs lots of daily care and follow-up appointments with various specialists, he is now progressing well. He started walking aged 17 months. However, his heart condition was not resolved at the time of the interview, Emma was waiting for a meeting with the surgeon to discuss a further heart surgery.

*Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe). 

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