Parents’ experiences of neonatal surgery

Impact on the child as they grow up after neonatal surgery

We interviewed parents of babies who had surgery in their first year of life, for various conditions, at various stages after the operation. Some still had a young baby recovering from surgery, others had children, teenagers or in one case an adult son. So their descriptions of the impact the surgery (and the condition behind it) were diverse. Some described their children as 100% recovered, others were still very much in the middle of an uncertain path.
Development: babies

The impact of the underlying condition and surgery on their baby’s overall development varied greatly. Some were doing well, despite considerable problems. Claire said her son had not done things in a developmentally normal pattern; “he’s found his own way of doing things.”
Pamela and Nicky had premature babies who developed necrotising enterocolitis (NEC)*. Once they were home, they seemed to be developing normally, although both were conscious it was “very early days”. Others were very much aware it was a case of “wait and see”, a few children still had complex health problems which were affecting their development. Joe’s daughter was definitely delayed in her physical, speech and language development at 16 months. “It’s like having any other 16 month old in the house, except she doesn’t eat and she doesn’t talk.” 

Parents who had babies who had surgery for Hirschsprung’s disease* described it as a “silent disability” (Matt and Donna) and a waiting game until they started potty training.
But many babies who have had neonatal surgery will develop normally. Alix and Antonio said you wouldn’t notice any difference in their son who was 9 months old, who had had congenital diaphragmatic hernia (CDH)* at birth. Mary’s son had surgery and a stoma* shortly after birth. By 6 months, he was thriving. 

Development: children and teenagers

Some children had put their early surgery behind them and were thriving at school, although some with a few ongoing issues like constipation or a low immune system. Louise’s son had CDH and surgery shortly after birth. He is now 5 years old and in school and is “completely 100% fully recovered.” In more complex cases children were still struggling with side-effects of their condition or surgery and hospital visits were still regular. Sally-Anne and Simon’s son was thirteen and still had digestive problems and was seeing specialist doctors. When Joanne was interviewed her daughter was 7 years old and was still under consultant care for her short bowel. Lucy and Jason’s son had had a stoma put in twice to support his bowel after his operation for Hirschsprung’s disease, which gave him a new lease of life.
Impact of being in hospital

Often parents wondered about the effect on their children of the weeks and months they spent in hospital in their early life. Few children seemed aware of specific memories, and most children were not too disturbed by going back into hospital. But some had developed fears which were impacting on their care. Fiona and Mike’s daughter is scared of noises that sound like the breathing machines (ventilators) from her time in intensive care units. These include for her the noises from vacuum cleaners and hairdryers. Julie’s son was having counselling to help him prepare for major forthcoming surgery.
Feeding

As many of the babies had surgery on their bowel, feeding and digestion was often an ongoing problem, including reflux and/or constipation issues. Several babies had severe reflux for months and into their childhoods. Sally-Anne’s son still suffers with regular vomiting as part of his reflux disease. Others like Nicky’s son, were not able to digest milk and had to go on special diets. Constipation was particularly an issue for babies who had had Hirschsprung’s disease or gastroschisis*. Joanne’s daughter has a short bowel, and gets her nutrition from a combination of normal food that she eats in the day and overnight intravenous nutrition (through a tube into a vein).

Scars

Scarring on the tummy is common after neonatal surgery. Some children were more self-conscious than others about scars. Jane's daughter has a little hernia left over from her exomphalos surgery, and no belly button, but Jane said that being different just makes her daughter feel special. Alison and Martin’s son was very self conscious of his scar as a child, especially in school swimming lessons, but now he is 25 it no longer bothers him.
A few children had to deal with being bullied at school, at different ages. Simon and Sally-Anne said their son had been called names, like “crinkle belly”, and they had to have frequent meetings with his school. Clare said she was really worried about her son being bullied because of his Hirschsprung’s disease, but it hasn’t been a problem in his school, “he’s very accepted.” Parents described developing strategies with their child to help them handle curiosity from other children. Jane described her daughter’s way of coping, if someone asks she just says, “’I was really poorly when I was a baby’…. She thinks it’s quite a good thing.” Amy’s daughter had a scar from her exomphalos* surgery  “I took her and a little friend up to the city one day, when we were in the bathroom, her friend said to her, “[daughter], you don’t have a belly button.” And she said, “No, I don’t. It’s because I’m special.”

Telling the story

Photographs can be an important tool in remembering and making sense of the experience for parents and child. Looking back through photos now, Alix and Antonio realised that although they thought their son was just a normal baby when he was in hospital, he was really very sick and thin. Several parents discussed how they had talked, or planned to talk, to their children about their surgery. Fiona said she had felt strange at the time taking pictures of her daughter when she was in hospital, but she and her husband are now glad she did. Her daughter is 8 years old and loves to go through the photos. 

“Fiona: Looking back, it’s really important to her… She loves going through them, doesn’t she, almost therapeutic.

Mike: She achieved something didn’t she?”


Amy’s daughter had an exomphalos. Her first year was a real challenge and Amy was told her daughter was failing to thrive. By six years old her daughter  was becoming aware of her differences from other children, in particular her lack of a belly button. Amy is pleased that she kept photos and made a scrapbook, to remember her difficult start, and allow her to talk to her daughter about it as she grows. Clare and James were starting to talk to their son about the operation he had now he was five. They were using a children's book about the body to explain it.
*Footnote definitions:

Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 

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.

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

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.

Gastroschisis
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

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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