Parents’ experiences of neonatal surgery

Impact on the family and friends as a child grows up after neonatal surgery

Having a baby who needed neonatal surgery had a huge impact on both parents and the wider family and family life. Parents we spoke to described how it affected their relationships with each other, with friends, with grandparents and other family members, including the baby’s siblings.

Relationships

Several parents talked about how having a baby who needed surgery affected their relationship with each other. Some marriages or partnerships had not survived. Those still together were honest about the strains it had put on them (such as Clare and James who son has Hirschsprung’s disease*).
Several parents described the isolation they felt as one of them was in hospital caring for their baby, and the other was home looking after other siblings. Claire said that her husband “was obviously being like a single parent”. Lucy and Jason talked about how it was hard to find time to spend with each other, especially going away overnight, when their son who has Hirschsprung’s disease and a stoma*, needed so much of their time and attention.

Friendships

Several people said their friends really rallied round and supported them, but it could be hard to maintain friendships, or make friends with new mothers. “I, in particular, got quite isolated and people’s lives go on and yours doesn’t. You’re just stuck.” Jane
Claire described how hard it was to keep up with her friends, as she found it difficult to be around other children of a similar age when her son was young and so very ill. She still needs to spend a lot of her time caring for him, but the support she has had from some of her friends has been “priceless” – “just kept texting me or calling me when I didn’t reply because I had too much going on. Come round and bring lunch, come round for 10 minutes because that’s all we could cope with.” Clare felt that she was “robbed” of being able to form relationships and friendships with other new mums and lost the opportunity to share and get support from others’ experiences in those early weeks.

Other family members

Several parents talked about how vital the support they received from their parents and wider family was. But they were also honest about the emotional impact it had on family members. Louise described how upset her mother and her sister were when her son was ill with congenital diaphragmatic hernia (CDH)* (see below).

The support some parents had received from their own parents was invaluable, both emotionally and practically in helping look after other siblings. Vanessa talked about how her mother Googled Hirschsprung’s disease the minute they found out about her son’s diagnosis. She became “suddenly an expert” and her family has been a fantastic support in looking after her son – “especially my mum she looks after him and they all know what his normal is”.
Siblings

Parents tried as hard as they could to keep things normal for their other children, but their baby’s surgical needs did impact on siblings, some more than others. Some talked about their other children being very affected, but others felt there had been less impact. In some families one or both parents were away from home for long stretches of time, and there was anxiety about whether their new brother or sister would make it home.
Older siblings, who were often only toddlers themselves, sometimes found it frightening and difficult to understand the disruption that was taking place in their daily routines. Leanne found her three year old son really played up for a few months while she was looking after her baby daughter who has Hirschsprung’s disease. “He was finding it really hard….You think you’re doing a really good job of balancing everything but you look back and you think, ‘No, it’s still really hard on [son]’.” Emma has tried very hard to keep life as normal as possible for her older son, while she has been in and out of hospital with their younger son who has oesophageal atresia (OA) with trachea-oesophageal fistula (TOF)*, as he was struggling and developing night terrors because he missed his mummy.
But some older children did seem to cope better. One of Pamela’s older daughters got involved in tube feeding and helping. Fiona and Mike said their older son was very gentle with his younger sister, and Claire said her son had been amazingly patient with his younger brother. For parents who were living in hospital for weeks or months on end, maintaining some kind of normal family life was really difficult. Several, like Julie and Fiona and Mike, tried to make the weekends about visiting as a family, taking in supper and being together. But having children visit in hospital could also be challenging and stressful, as Joe described.
Parents were honest about how hard it had been for older siblings, even once their new brother or sister was home, as there often lots of appointments to juggle and ongoing health issues. “Our oldest son has been absolutely amazing. He knows more about trachys* and everything else than most doctors do, and he’s been very patient with [son], but it has been hard for him.” But they were also able to talk about how their baby’s illness had strengthened the family.
*Footnote definitions:

Hirschsprung’s disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.

Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out onto the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal. Faeces (poo) passes into a bag attached to the outside of the body.

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

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). 

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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