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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 E lived two hours away from the hospital where her daughter was being cared for. She went to stay with her parents the first night out of hospital, as they lived closer. She didn’t want to talk to any visitors.

Amy E lived two hours away from the hospital where her daughter was being cared for. She went to stay with her parents the first night out of hospital, as they lived closer. She didn’t want to talk to any visitors.

Age at interview: 32
Age at diagnosis: 29
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Well it’s about if I could drive it it’s at least two hours each way but then when you get to [specialist surgical centre] where do you park cos it’s just horrendous for parking but the first night I got discharged I went back to my mum and dad’s house in [borough] which wasn’t as bad but it still felt like I was abandoning my child it still felt like there was an elastic band being stretched and I just couldn’t wait to get back there it was just, no-one, everyone was trying to come round and see me that first evening I was like I don’t wannna talk to anyone I just want to go to bed so that it’s tomorrow and I can go back. But then the next night we got a, on the Monday night we got a Ronald McDonald house so, and that was just oh my God I didn’t know what I did until that point but without that place I would have gone absolutely mad.
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.
 

Barbara said they just did radio silence when their daughter was in hospital.

Barbara said they just did radio silence when their daughter was in hospital.

Age at interview: 44
Age at diagnosis: 38
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Yeah no we really didn’t and actually it would probably be different now with Facebook and things like that but at the time it would have required me to text everyone and I have to think of all who might be worried about us, I think we just did radio silence and when you know, she was born we put out an announcement and when you know, e-mailed all our friends and when she got home I let everyone know but probably for most, except our closest friends who would come and see us and you know, like my work colleagues our whatever they just had to, they didn’t know. And they didn’t want to intrude and actually it was the best we just were in this weird little bubble of reality that we just got through on our own no we didn’t really keep in touch with people at that time, just maybe close family and friends. Cos it was so different like one minute you’d be celebrating some little achievement and then the next day you were worse off than the day before and it just got really tedious, you know, having to, you know, get people’s hopes up ‘Oh she’s doing great she got to 5 mils,’ and ‘Oh God she’s back in surgery’ and, you know, it’s just, just too much.
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.
 

Joanne was able to share the good and bad news after her daughter’s last bowel surgery.

Joanne was able to share the good and bad news after her daughter’s last bowel surgery.

Age at interview: 41
Age at diagnosis: 34
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But sitting actually in the ward where they’ve just taken the bed from is just horrendous really, you don’t really want to be doing that, that’s kind of, yeah just almost like a recipe for, you know. So and I had updated a few people like I’d sort of been writing long e-mails that I sent out to groups of friends just to give them some idea. I was also a bit concerned about whether she might be covered under insurance or something because she was under three months old, you know, and I didn’t know whether there were any sort of rules. I had health insurance with work and therefore I was wondering whether, you know, up until three months old maybe your baby’s automatically covered and therefore she might be covered so I’d been trying to get in touch with work and things, you know, so there were people who knew and I was, so I think even on that day when we found out everything, I think it was the following day when I sort of, you know, when she had her, say her last resection surgery. I think the following day I had sort of updated everyone with the bad news is, you know, the good news is, the bad news is, they can’t save any more bowel this is the situation we’re in you know, life on TPN* is what we’re looking at, but obviously nobody really understands but you know that’s what you sort of, at least you’re getting some sort of message out there.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.
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.
 

Rebekah said Facebook was a great way to keep friends and family up to date with her daughter’s progress.

Rebekah said Facebook was a great way to keep friends and family up to date with her daughter’s progress.

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And it’s really awful because everyone’s trying to help and sort of find out what’s going on but you don’t actually have enough time to be texting a 100 people a day, so that’s where Facebook was really good because you give people updates and also we found if we told so I would tell my mum what was going on, [husband] would tell his mum and then they would tell some of the other family members because everybody’s trying to be lovely but they don’t actually realise that actually repeating something a million times or even trying to find the time to text or phone sometimes was just not possible so it was good having someone else that you told and they could pass the information on. But everyone was very understanding they knew that if, they know if the phone wasn’t picked up it was nothing personal [laughs].
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.
 

Matt and Donna said Facebook was a good resource for updating friends and family, and telling them more about their son’s rare condition.

Matt and Donna said Facebook was a good resource for updating friends and family, and telling them more about their son’s rare condition.

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Has it been quite hard talking to friends?

Matt: Only with, probably yes because we’re quite disconnected from them so most of our- we’ve got a couple of friends locally but one has moved away and the other has been very busy, although she has been helping around and been supportive and then our other group of friends are all my friends from [City] aren’t they really so they’re very disconnected I mean we sort of shoved a note on Facebook when all this carnage was happening a couple of days after he was born just to say it’s a bit, ‘It’s gone a bit wonky just we’ll be in touch thanks for all your lovely messages’ that kind of thing.

Donna: Yeah it was trying to stop the, cos we’d, we’d done that initial thing, you know I’ve got my baby and put it on Facebook and I was still getting the messages saying congratulations after we were sort of sat in HDU* and it was just like I just said I can’t, I can’t cope with getting them and people not knowing, I need to just put it put there that we’re going silent and, you know, just you know we just, we just thought we’re not going to respond to you I’m not being rude not responding to your messages but I just don’t want to deal with them I’m not opening, like we refused to open his cards. My dad kept bringing them up to the hospital if we got any in the post and I’d keep saying I’m not opening them until I get home until [son]’s home, you know.

Matt: But then by the flipside of that was Facebook was very useful because you basically just put up a link to Hirschsprung’s* didn’t you at one point pretty much give or take to explain to people so you don’t have to have that conversation time and time again.

Donna: Yeah you could just do it to everyone without having to repeat.

Matt: Truthfully with all of our friends he’s probably only seen…

Donna: Yeah he’s still not met everybody.

Matt: He’s still not met quite a few just with being busy and obviously a lot of it being weekends and stuff and their all busy.

Donna: We’d plan to do something and then he’d get ill or he’d have his surgery and just it’s difficult to explain to people because it’s what you read on the internet and I always sound really pessimistic with people asking me how he is cos I, you know, I feel as though I can’t say yeah he’s fine then I go yeah, yeah he’s had his operation that’s fine now isn’t it and its like well we won’t know until potty training age and then we don’t know it’s the unknown and people think unless they’ve been there don’t understand that unknown that it is, you know, it’s unknown.

Matt: Yeah.

Donna: I think people think that the operation that was it that was the end of the Hirschsprungs and that’s a cure, it’s not a cure it’s not he’s always going to have Hirschsprung’s Disease he’s never, you know, that’s something he has to live with.

Matt: Yes.

Donna: And that’s sort of the thing that people don’t, don’t realise and that’s what my worries for him is sort of growing up its sort of, obviously we don’t know how it’s gonna play out but if he’s not as normal as he can be with his bowel movements, you know.

* High Dependency Unit (HDU)
Babies in an HDU require slightly less monitoring and medical support than in an Intensive Care Unit (ICU). They may still need some help with breathing.

* 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 (pooing) normally.
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.
 

Clare felt that many of her friends’ experiences of parenting were so different to hers she stopped talking about her son’s condition.

Clare felt that many of her friends’ experiences of parenting were so different to hers she stopped talking about her son’s condition.

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And do you find it hard talking to friends?

Yeah, yeah there were, again you just start to feel like you just sound like a broken record in fact it’s been really funny getting involved with the, the research project and even these interviews, because apart from between us to a reasonably large extent, I think I have just sort of stopped really talking about it to people and yeah it did, cos you kind of get sick of hearing yourself talking about it as well and it starts to not be very healthy, you sort of think, we’re looking forward now, you know, this is just going over old ground. but certainly going through it all I think I did try and talk to friends about it, but you become very quickly aware that your experiences as a mum, you know, rearing your child is very different to theirs and, and you’re conscious that they aren’t really going to know what to do with that information. yeah one of my, one of my really good friends is a GP and actually it was really good talking to her, because I knew that she got it medically and I didn’t have to kind of explain all the details and actually she was one of the first people who said to me, you know, I think this is actually making you feel quite low and that was, that was quite important I think for me as well.
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.
 

Joe said some of her friendships have survived, and others haven’t. She didn’t like people treating her children like ‘juicy gossip’.

Joe said some of her friendships have survived, and others haven’t. She didn’t like people treating her children like ‘juicy gossip’.

Age at interview: 36
Age at diagnosis: 34
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And how have your friendships kind of survived this?

Some have and some haven’t. My very close friends that I had to start with are still my very close friends that have supported me through thick and thin through the whole lot of it, through the, the every time I saw them antenatally I’d cry and every time they came to the hospital we all cried and when I nearly died we all cried and every time [Name] had to have a surgery done we’d all cry, and they’ve been extremely supportive. But then there’s been the other friends who beforehand were extremely supportive because [Name] wasn’t here and they weren’t presented with an actual human being who was poorly, it was the thought of a human being going to be poorly which is entirely different. Yes lots of ‘Oh I’ll come and visit you in hospital’ and you do once but three months later I’ve not heard from you, it’s as very lonely experience in hospital although you’re very busy with medical things your life stops. As a parent, not even as a parent, as a human being as a person your life stops, I don’t do anything now that I did pre-[Name] that is the same. Except going out on Thursday night that’s it but even then I go out on a Thursday night with my friends and they ask about [Name] which is lovely and it’s nice that they’re concerned about [Name] but sometimes you just get so sick of talking about medical things that if you just go ‘Oh yes she’s doing fine,’ if you give that answer that’s not enough they want to know the ins and outs and the grittiness because it’s like juicy gossip and my kid’s not juicy gossip but you don’t have to live with her so yeah. Yeah friendships have suffered so my relationship with, I have two mothers-in-law, my relationship with one of them will never ever be the same, yeah, because she just didn’t get it, she doesn’t get it and yeah. And then you get the ‘Oh your kid had an exomphalos* I saw that on One Born Every Minute’ [laughs] I know all about that because I watched it on the telly once for five minutes. Yeah so I’m surprised I haven’t bit my tongue off by now yeah I’m really good at arguing back with medical professionals now but I bite my tongue with most of my friends yeah.

* 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. 
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.
 

Mary is still in touch with mothers she met in hospital. The bond she shares with them is quite profound.

Mary is still in touch with mothers she met in hospital. The bond she shares with them is quite profound.

Age at interview: 42
Age at diagnosis: 41
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Oh God everybody the nurses obviously the consultants and they have a rotation system so you see a different consultants every week which is not, it had its good points and it had it's bad points, so you got to know, you do get to know all the consultants. The chaplain, the chaplain was, all the chaplains were great actually it was lovely to have them come and visit in the afternoon. and I think, the chaplain there was particularly nice, actually, and the psychologists attached to the unit I used to enjoy talking to him about how children are affected by stays in intensive care and what the research is on things like that as well. and the other mums as well obviously there was a kind of parents room where you’d meet other parents but also the breast the breast pumping room as well, you would chat with the other mums. And there’s some I’m still in touch with, you know, sadly one of them, two of them their children are still in hospital so we keep in contact. And I think there is something about those parents, obviously, you know, you’ve gone to have a baby, you know, I’d done the NCT and I have my NCT mums who have been great and a real support but there’s, you know, it’s what you share with other mums who’ve had babies in intensive care is, it’s quite it’s kind of quite profound and I think we will probably keep in touch with some of those mums and babies for a long time.
(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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