Parents’ experiences of neonatal surgery

Communicating with friends and family when a baby needs neonatal surgery

Many parents we talked to found it difficult to keep up with friends while their baby was in hospital, or when they brought their baby home. They often found they were so emotionally exhausted by their experiences that they didn’t have the energy to keep anything other than very close relationships going. Being in a hospital miles from home didn’t help.
Amy said she is normally a very sociable chatty person. But when her daughter was in hospital she couldn’t socialise with other parents on the ward, or keep up with her friends outside. “I could only focus on my child and not, I think I could only, I only think I had energy to focus on her. …I think that I really through the whole thing, pregnancy, hospital stay and afterwards, I think I really isolated myself from people. I found it too hard.” Amy

Louise’s son had a congenital diagphragmatic hernia (CDH)*. She and her husband were “united in getting through it together” and didn’t really tell even her parents too much. She felt they would have worried themselves ill about it. Relationships with the baby’s grandparents could be very supportive and helpful though. Alison and Martin said their parents were great at passing on news to their wider family circle. “We phoned them and told them on the phone didn’t we, your parents and my parents. And then they sort of told other people really so we didn’t, you know, so we didn’t have to keep, having to repeat ourselves.”

Victoria’s son was born prematurely, developed necrotising enterocolitis (NEC)* and needed emergency surgery. She said she found that people didn’t really know what to say to her, which she found very isolating. “Even when we were going through it, it wasn’t about talking about being at the hospital and things we are going through, it’s just somebody to talk to me and be normal.” But normal conversations weren’t for everyone. While Victoria wanted normal conversation, Amy said; “I couldn’t have a conversation about the weather”.

Nicky said that it could be really draining to have visitors, and conversations about her son’s progress, when he was so ill. So she and her husband became cut off from most people. Adam and Sonya described how when they went home with their baby after her hernia operation, they wanted to be on their own for a bit, “like it was a sort of ‘circle the wagons’ and just let’s be together for a while.” Barbara’s daughter had gastroschisis*. She said that she and her husband were in a little bubble just getting through it on their own. They felt that every day there was a step forward or back and it would have been tedious and exhausting to update everyone with each stage.
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Some parents were open to talking about the surgery and their baby’s condition. Luke said, “I mean as far as talking to people about the condition, you know, it’s not, you know, it’s not a pretty condition…. but we made a conscious decision with [son] that we were going to talk openly about it and we were going to laugh and joke about it.” 

But parents were also mindful that their baby’s condition might be difficult to talk about to other parents, not wanting to burden them. Michelle and Harry said that they only told a very small circle of close friends about their son’s diagnosis with gastroschisis; “it was partly because you always get the whole ‘oh I’m so, that’s so exciting’ and you don’t want to rain on people’s parade really it’s kind of a, they’re so excited for you but you don’t want to say ah yes but…”

Keeping people updated

Keeping a broad circle of concerned friends and relatives updated was a strain for many parents. Using blogs or social media like Facebook was a popular way of keeping in touch. During her pregnancy with her daughter who had exomphalos*, Jane found it tricky handling other people’s concerns, so she started writing a blog. She felt she could involve people without having to talk about it all the time. Once her daughter was born, updating it was a nice way to get off the ward for a few minutes and saved her from the exhaustion of having to talk to everyone.

“Just so that people could look at it and, you know, people would feel involved without us having to talk about it all the time. And go through you know, ‘what’s exomphalos?’ What? You know, so that was quite useful I think.” Jane

Joanne sent out a long email to friends and family after her daughter’s bowel surgery.
Rebekah expressed the views of many parents when she said how hard it was to find the time to update everyone with her daughter’s progress. For her, as for many others, Facebook was a lifeline.
Matt and Donna were recently home from their son’s operation for Hirschsprung’s disease* when we spoke to them. They had used Facebook to announce their son’s arrival, and then found it stressful when congratulations messages were still coming in after he had become seriously ill. But they later found it helpful to be able to update their friends and family about his condition and progress. In addition to being able to pass on news, being able to link to websites that explained the condition was really helpful for them to explain their son’s rare condition without having to repeat it endlessly.
Zoe and her partner organised a fundraising event for the Ronald McDonald house where they had stayed, “So we actually wrote our story online and created a Just Giving page and we got loads of support it was absolutely amazing. It made me kind of wish that I’d done it sooner but it wasn’t, it never felt like the right time.” Zoe

Testing friendships

Many parents found it hard to relate to other parents who had not experienced what they had been through. Mike and Fiona still find it hard even now their daughter is 8 years old, to listen to friends complain of being tired or worn out from their children. They feel so removed from the “normal baby thing”. Clare’s son has Hirschsprung’s disease and she said she had largely stopped talking about his condition to friends, as she felt like a broken record.
Having a baby seriously ill in hospital for weeks and months tested the friendships for many of the parents that we spoke to. Victoria said that while some friends had been amazing, others hadn’t really understood what she had been through. Sometimes people were annoyed by friends thinking they knew about it because they’d seen a TV programme or read Wikipedia. But in some cases it strengthened friendships. Michelle found one friend who’d had a similar experience a real source of support, and Clare found it useful talking to a friend who was also a GP. Ally said that some friends from the past actually got back in touch after reading her Facebook post.
While many parents said they couldn’t really cope with talking to other parents in hospital, or having visitors, this was not the case for everyone. Mary described supportive conversations with the chaplain and psychologist while she was visiting her son, and some lasting friendships she made with other mothers.
(See ‘Emotions, support and counselling when a baby has neonatal surgery’ and ‘Meeting other parents when a baby has had neonatal surgery (online and face to face)’).

*Footnote definitions:

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

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. 

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.

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.

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