Parents’ experiences of neonatal surgery

Emotional impact on parents when a baby has neonatal surgery

Coming home with a baby after surgery, with sometimes ongoing complex health needs, was often difficult for parents. The anxiety and isolation many had experienced in hospital often continued. Many felt that it had changed them, and their relationships.

Effect on relationships

While some couples did not survive the experience, others felt that it had strengthened their relationship. Claire said, “I think it’s a kind of make or break type of situation, having a child with [son’s] level of needs and everything we’ve been through…we’ve definitely been made stronger through all of this”. Adam and Sonya were in hospital for 3 days with their daughter who had a hernia* operation when she was just three weeks old. Although they were exhausted when they got home, they felt the experience had tested them, and they had passed.
Lucy and Jason’s son has had several operations for his Hirschsprung’s disease*. They have helped each other through the ups and downs, and never fight. “Normally one of us can pull the other…. generally speaking one of us is the one who is focused and the other one is - not in pieces but just not quite with it - and we, we help each other through.” Victoria’s partner helps her ‘get a grip’. 

Others we spoke to were honest about how coping with their unwell infants had put a strain on their relationships. Joe said she and her husband rarely had a conversation that didn’t revolve around one of their daughter’s medical needs, “he’s been my rock through the whole thing, but we’ve definitely lost our spark.” Amy E struggled emotionally when she brought her daughter home from hospital after her operation for gastroschisis*. She found it hard that her husband went back to work, and looked to her to make all the decisions about their daughter’s care. She found the pressure hard to cope with. Equally partners said it was “tough” going back to work.
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Feeling lost, lonely and anxious

Parents had described feeling isolated in hospital, and this often continued once they came home with their baby. They felt they shut themselves off as they struggled to cope with their baby’s needs. Donna said she was struggling with her anxiety after her son’s surgery for Hirschsprung’s disease. Victoria’s son was born early and had a bowel operation after he developed necrotising enterocolitis (NEC)*. She said her anxiety levels had been awful since bringing her son home.
Joanne’s daughter became unwell very suddenly and had emergency surgery that left her with a short bowel, She was critically ill and Joanne feared they were going to lose her.

She feels she constantly lives with the feeling of having looked over the edge of the cliff of losing her child.
Several people talked about post-traumatic stress (PTSD) and depression and how they sought counselling and CBT.

Ally and Shanise did talk about the anxiety lessening over time. Shanise said, “It feels like a lifetime ago”. Ally described a sign on the wall of the specialist hospital where her son was cared for; “They’ve got little stories on the wall of like parent’s experiences and things and how the children have got well. And one of them does say that once you get home you quickly forget and you do, you do you just move on. I suppose you don’t forget but the trauma of it dissipates the stress and you can look back and think gosh yeah it was tough but….” Shanise and Sonya both said it actually made them less anxious as a parent, other problems seem trivial.
Feeling as though they were changed

Several parents described how they felt changed by their experiences in hospital with a sick baby. Amy’s daughter was in hospital for several weeks with exomphalos*. Once she was home, she felt that she had lost her sense of who she was. What was perhaps a normal feeling for a new mother was made stronger by her experiences with her daughter’s surgery and recovery. She didn’t feel she coped very well during that time. 

Joe says that her role has changed since having her baby, she had two other children with medical problems and feels she is now in charge of “team ill” while her husband is in charge of “team well”. As she looks back at old photos, she feels her identity has been lost along the way.
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*Footnote definitions:

A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

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.

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.

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.

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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