Parents’ experiences of neonatal surgery

Claire

Age at interview: 34
Age at diagnosis: 33

Brief outline: Claire’s second son was diagnosed with exomphalos* when she was 15 weeks pregnant. He was 18 months old at the time of the interview.

Background: Claire is an occupational therapist, married with two children.

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Claire was interviewed when her son was 18 months old. He was at home during the interview. He has a tracheostomy* and is not able to hear, but is sitting and walking with assistance and is able to sign up to 200 signs.

Claire was pregnant with her second child. She went along for the 15 week scan, not expecting anything would be wrong, and was shocked when the sonographer asked for a senior staff member to come in and take a look at the scan. The sonographers had identified exomphalos*. Claire and her husband were taken into the “bad news” room and spoken to by a specialist midwife. She gave them some information to take home. It was a Friday, and they were given an appointment the following Wednesday with the Fetal Medicine Unit.

Claire and her husband were shocked and upset. Over that weekend they did lots of online research.

The appointment at the Fetal Medicine Unit was very helpful. The baby was scanned again, and they had a meeting with the consultant who explained as much as he could. They had an amniocentesis that day, which came back clear. There were also many other tests and scans, in particular cardiac scans. They were told that there were going to be lots of questions that couldn’t be answered until their baby was born. The pregnancy was very medicalised from there on.

Termination was mentioned in the leaflet, and Claire and her husband were told by the midwife that they would support them whatever they decided. Before they reached 24 weeks, they sought a second opinion, just to make sure that they had all the information they could gather. 

During this time, they went to look around their local children’s hospital and met the surgeon who would be overseeing their son’s care. He explained that with regard to the exomphalos they would use a “paint and wait” approach, rather than immediate surgery. They also had the opportunity to meet parents of a baby who also had exomphalos. They found this incredibly valuable and are still friends today.

After 24 weeks, Claire became increasingly unwell with high blood pressure and she was scanned regularly and admitted to hospital.

The baby was born by caesarean section at 37 weeks in their local women’s hospital. Claire was able to see her son very briefly before he was taken away to the NICU. Within a few hours, it was decided that he needed to be transferred to the children’s hospital where he was put in Pediatric Intensive Care. He developed breathing problems and was put on a ventilator.

Claire found it really hard to be separated from her baby. She was herself discharged four days later and was able to go and visit him. She worked hard to establish breastfeeding, but did not feel well supported with this, although in the end she did manage to feed him with breastmilk via a naso-gastric tube until he was 13 months old. Their baby was not well, with breathing problems and finally, after several attempts to wean him off the ventilator, the decision was taken to give him a tracheostomy. This was a huge decision for Claire and her husband, but was actually a very positive step forward. He still has the tracheostomy* in place now, aged 18 months. Once he had had the tracheostomy fitted he was transferred to the surgical ward, where he stayed until he was 3 months old. He underwent multiple tests and his parents were taught how to look after him with a tracheostomy. 

In terms of his exomphalos, doctors painted his tummy with manuka honey, but did not, and have not yet (at 18 months), done any surgery.  His stomach muscles have not joined together so he will need surgery at some stage to rectify this. He has a constellation of issues, and although they have had genetic tests and seen a genetic counselor, they do not yet have a clear diagnosis. One of the major challenges for him is that he has thin auditory nerves (auditory neuropathy disorder) and is deaf.

Being discharged home was a big step. Their son needed very intensive round the clock care. The first couple of months were exhausting for Claire and her husband, until a care plan was put in place which gives them two nights a week of nursing support. Their son still needs regular medical appointments, and life looking after him is complex.

*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. 

*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.

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