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Parents’ experiences of neonatal surgery

Meeting other parents when a baby has had neonatal surgery (online and face to face)

Finding support from other parents who had been through similar experiences (either online or face to face) was described by many parents as absolutely crucial to helping them to cope and understand more about their baby’s diagnosis.

“Find parents. My absolute number one thing” Claire

“That was my number one support during that time with all these other mums who’d gone through it.” Amy

“Kept me sane, I think, or sane-ish” Jane

Emma’s son was born with Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)* and said other parents were important as unlike friends “they understand what the terminology is and how he’s doing and I think you need someone that you can talk to that you can relate to in this situation.”
 

Emma’s son was born with OA with TOF and other complications. She said she really needed to find people in similar situations to help her through the dark places.

Emma’s son was born with OA with TOF and other complications. She said she really needed to find people in similar situations to help her through the dark places.

Age at interview: 30
Age at diagnosis: 28
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I’ve done quite a few support groups which I think help, because as much as the doctors are against them because you see the bad side of the stories, actually what you also see is the positive and you see how well some children are doing I think when you’re in a dark place, which, let’s be honest every mother of a child that’s poorly goes through dark places I think you need other people there who are going through similar situations. I think the hardest part of being a mum with a child with serious conditions is that you get really lonely, you lose a lot of friends and family cos people don’t know what to say to you. Which is hard and I think you get a different support network from these groups.

Yeah, yeah.

So, yeah I tend to think like that [laughs].

And how do you know that doctors are against them?

They said, they, a couple of people, oh [support group name] mummy’s group and, you know, don’t go on there you’ll see all the negatives and things like that, but I did join and I’ve gotta be honest, yeah you get the odd person complaining and the doctors aren’t doing this and they’re doing that but the way I see it is they’re just having a vent, you know, let them vent they’re not really slagging the doctor they’re just, they’re upset with the situation because it’s their baby and they’ve got to have somewhere to vent with people that understand cos it’s hard I can’t discuss in full detail [son]’s conditions with my friends and that because they don’t understand so you just gotta say oh he’s not doing very well today or he’s not breathing quite right I can’t suddenly go into detail with them, whereas with some of these groups I can because they understand what the terminology is and how he’s doing and I think you need someone that you can talk to that you can relate to in this situation.

Yeah, did you make any friends in hospital?

I did, I did and I’ve gotta be honest I would class some of them as really close friends now I speak to them regularly it’s harder for those whose babies didn’t come out or who’s babies are still in but yeah we, you, we stopped at Ronald McDonald House and obviously you get to, you live with these people you might not be staying in the same rooms as them but you live in the hospital with them, you go home you eat dinner with them, you go back to the hospital so you do make some really good friends through it.
Feeling other parents are the only people who can really understand

Parents often felt very isolated by their (often extended) experiences in hospital and because their baby had a rare condition (see ‘Impact on the family and friends as a child grows up after neonatal surgery’, ‘Emotional impact on parents when a baby has neonatal surgery’ and ‘Emotions, support and counselling when a baby has neonatal surgery’). They felt that while their friends and family were supportive, they were not able to fully understand what they were going through. Parents also felt outsiders at ‘normal’ parent groups, which further isolates them. Clare said, “When you’re kind of going out with your mums groups and you’re trying to make those connections and share your experiences and things, it really tainted all of that because I started to feel like I had to hold back on certain things because I started to feel like I was sounding like a broken record.”

Amy E’s daughter had gastroschisis* and was in neonatal intensive care (NICU)* for several months. She met another mother in NICU who became a great friend. “She was the only other person in the world I felt that understood what I was, what I felt, and she still is to some degree.” Amy E

Finding parents online who had a baby with the same condition, or forming bonds with other parents while in hospital, were described as a lifeline. Fiona and Mike spoke about how their experiences in NICU with their daughter who had exomphalos* and complications had left them “a bit mentally frail”. While they acknowledged counselling might have been a good idea, it was hard to find the time. Finding other parents going through something similar was a good strategy instead. “You’re almost better off again finding parents in a similar situation and going down that route.” Mike
 

Joe found a parent who lived close by whose daughter had also had an exomphalos a few years earlier. She had met her online, where she felt people knew her better than her actual friends.

Joe found a parent who lived close by whose daughter had also had an exomphalos a few years earlier. She had met her online, where she felt people knew her better than her actual friends.

Age at interview: 36
Age at diagnosis: 34
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So to have another parent who lives just down the hill who’s been through exactly the same as we’ve been through and all those emotions and feelings and knows what it’s like when you say ‘Is my baby gonna live, will my baby die?’ [tears up]. To say, I sat down with my husband and I planned my baby’s funeral last night and she gets that and your friends don’t get that and your friends have gone ‘God why you have done that, she’s not dead.’ [Laughs]. To have someone that gets the little things to get what it’s like to be on special care and to get what it’s like to have the flash backs and the- to know what it’s like having older kids that you have at home that you need to look after too and yeah. Or to whinge that your husband’s gone [Laughs]. What more medical needs can we have in this house [laughs].

So do you see her for coffee or do you just meet her or-

Yeah, no we don’t meet for coffee we’ll meet for gin and wine [laughs]. 

Good for you, good for you.

Yeah sometimes we meet for coffee if the kids are there.

But you stumbled across her.

I did yeah, I did.

And how far away does she live?

She lives in [Town]. Yeah. Well, you know her [laughs]. Yeah and I looked after her daughter at the pre-school and I knew that she’d had problems with her abdomen at birth but her mum really didn’t go into much about it because it wasn’t a problem. It, it wasn’t part of her medical needs at the time so she didn’t really go into full detail about it and when I saw her beautiful face pop up on the screen I said, ‘Oh gosh the relief, quickly Facebook her, bleh, I‘ve just been diagnosed with this, I know you only know me as a pre-school leader but help.’ Yeah and the friendships the day we met up in [City] with people that I’d only ever talked to on the internet, who are, like your online friends who you feel like you know better than your actual friends who you see all the time because your children have been through this experience together and you know as a parent what it feels like to parent them. The support groups are so important because you don’t just then Google and get the horror stories you Google and you get the support groups and you get the faith and the hope and the knowledge that it works out sometimes, sometimes it doesn’t but sometimes it does, yeah. 
Support group meetings may be available in some places. Vanessa met other parents who had a baby with Hirschsprung’s disease* through a support group set up by her local hospital. She said that meeting other parents, “just sort of makes it a bit real, you know, that you aren’t the only one and just, you know, to meet actual people.” 

Other parents offer hope

Many parents drew strength and encouragement from being able to read or hear other parents’ experiences, and the experiences of older children with the same condition. Sally-Anne later found support online, but said that at the time she would have liked support from “somebody who’s been there, who’s walked in your shoes, who’s seen the light at the end of the tunnel. Because when you are going through it there is no light.” Parent’s experiences often contrasted with the doom and gloom they read in other sources of information. Joe said, “you get the faith and the hope and the knowledge that it works out sometimes. Sometimes it doesn’t but sometimes it does.” Donna said her toddler’s swimming teacher had put her in touch with another mum whose son also had Hirchsprung’s disease like her son, and they shared stories.

However not all parents were reassured by the experiences of other babies. Louise was wary of “false hope” during her pregnancy with her son who had congenital diaphragmatic hernia (CDH)*.
 

During pregnancy, Claire was introduced to another family with a son with exomphalos. It was lovely to see a happy little baby rather than just the gloom and doom of scans.

During pregnancy, Claire was introduced to another family with a son with exomphalos. It was lovely to see a happy little baby rather than just the gloom and doom of scans.

Age at interview: 34
Age at diagnosis: 33
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That was wonderful. We went to meet with one of the paediatric surgeons at the children’s hospital and we were given a tour of the neonatal surgical ward and very kindly, one of the nursing or whoever she was, she was showing round, said, “There’s another family here, actually, who have a child with exomphalos major-, I’ll go and speak to them and they might be prepared to speak to you.” They were extremely kind and despite what they were going through, they made some time to, to talk with us and show us their little boy, who’s absolutely gorgeous. And we’ve kept in touch since that time and that’s been, you know, really lovely to be able to speak to them. And it was just lovely see a you know, a happy, lovely little baby rather than doom and gloom and scans. So that made it all seem much more real and positive and actually, he was doing really well and was about to be discharged home. So that that very encouraging for when.
 

Barbara was wary of bad news stories and good news stories, as she felt they were not relevant to her daughter’s progress and recovery from gastroschisis.

Barbara was wary of bad news stories and good news stories, as she felt they were not relevant to her daughter’s progress and recovery from gastroschisis.

Age at interview: 44
Age at diagnosis: 38
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Yeah I’m not sure really because I think it is hard to predict, and so for me probably cos I’m a numbers girl I would have liked to have seen, you know, out of all the babies diagnosed at ten weeks how many make it to full term, how many you know, are fit and well at a year have, cos they’d say oh there’s a chance that they might have reflux and they might have this and they might have that, some sense of how likely all those things were would have been helpful. I mean we did meet someone in hospital who, I mean we met lots of other people who had the same thing and some with, you know, you overlapped with them for a bit and we met people with lots worse scenarios that made us count our blessings. But I did meet one girl who had been in for over a year, she was single young mum, so this is her first experience of parenthood of spending a year in this environment that I found six and a half weeks almost destroyed us, you know, so you know, she was obviously at the worst end of things I don’t know, I don’t know what would have been helpful. Maybe, you know, the other thing, I did read the happy stories and actually while we were in there was a probably a six year old and her dad came in cos he wanted to show her where she had been when she started to ask questions and I can remember the nurse saying to me oh that must be nice to know that, but it really wasn’t helpful because I was like well that was her, that doesn’t change any chance of it being my daughter, you know, it doesn’t chance the likelihood for my daughter that she’ll get to that or not it was irrelevant. And although I’m saying the bad news stories were upsetting I’m not sure that I would have found the good news stories, I’m not sure if it would have helped at all. But I think just to have some sort of story about the range of things that have happened to people might be good, so exactly what you’re doing I think is a great idea.
Friendships forged in hospital

Not everyone felt able to strike up friendships with other parents in hospital, it was just too emotionally draining. Amy said, “I felt like I couldn’t give them anything”. But others did make friendships that were incredibly important in helping them through such a difficult time. Mary found a “lovely camaraderie” with other mothers that she met while her son was in hospital. “It’s what you share with other mums who’ve had babies in intensive care, it’s kind of quite profound and I think we’ll probably keep in touch with some of those mums and babies for a long time.”
 

Zoe said she made lifelong friends while sitting with her daughter in hospital. Those relationships really helped her through.

Zoe said she made lifelong friends while sitting with her daughter in hospital. Those relationships really helped her through.

Age at interview: 24
Age at diagnosis: 22
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The environment I think yeah cos you’re sitting there and it’s hard not to but you compare yourself to every other family in the room you get to know every other family in the room you get to know their story as well and when, what I found the hardest was when she was getting better but the baby next door wasn’t and you’re bumping into those relatives in the corridors and you ask each other out of kindness ‘Oh how are you getting on, how’s your son, how’s your daughter?’ and it was the day that she got moved into the next room for the general ward and the baby that was born the same day as her wasn’t getting any better and you just felt absolutely heartbroken but you’re delighted at the same time for yourself. That is probably one of the hardest things, and you’re hearing all the stories and yeah it’s just we were lucky that she only had one setback that one biley vomit we were really, really lucky but not every baby was so that was I think the hardest as well like it’s not just your own kid you feel sorry for everyone that’s in there. Cos we actually made some lifelong friends in that place so.

Did you, was that just sitting next to the cots and chatting to each other.

Yeah.

And was that an important, were those important relationships?

Yes, yeah I think because that’s the only way you’re gonna have a conversation with somebody that knows what you’re going through. Like I’ve got, like we’ve both got friends and family most of them have had like kids in hospital at some point but not to the extent of where it’s from birth and it’s really hard to find someone that has been through that, so it’s just really helps sometimes to have a normal conversation that, that’s yeah you don’t get much of it when you’re in there not when you’re away from home I think that’s the hardest part being away from home dealing with it as well so. We obviously met people through Ronald McDonald as well, not all of them had babies but some of them had older kids as well but it’s a different world, it really is it’s like Big Brother you’re away from everything else so, you don’t get much reality, yeah.

Except it is your reality isn’t it?

Unfortunately yeah.

For that period of time yeah.

Yeah.
Finding support online - positives

While support from other parents in hospital was important, finding other parents through online support groups was also valued, particularly in connecting parents to others who had a baby with the same rare condition. While occasionally parents did meet someone nearby who also had a baby with the same condition, mostly parents were very isolated, so finding a group of parents online (often from all around the world) with whom to share their experiences and research symptoms was a lifeline. It helped them feel they were not alone, and helped to have someone to talk to on the dark days.
 

Amy’s daughter had exomphalos and finding other parents through an online forum was her “number one support” during that time.

Amy’s daughter had exomphalos and finding other parents through an online forum was her “number one support” during that time.

Age at interview: 39
Age at diagnosis: 33
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There might be more access but that’s something I didn’t have a lot of access to computers. And that was so important because I’d go down and I’d go into the groups where there was other mums with exomphalos babies all around the world and I’d say, “This is what’s happening to us today. What do you think?” And the feedback was incredible. Honestly, that was my number one support during that time with all these other mums who’d gone through it. So we were connecting and, even now, the group is even stronger. Six years on there’s people all around the world, who have exomphalos babies, and they call it different things in different countries but we’re all connected on a social media group. And, you know, when somebody new comes along, you can say, you know, this might happen, this might happen and to say that, you know, before your baby is born, nobody knows. You know, they can do tests and they can do scans and until the baby is born, they don’t know that whole picture. 
Joe’s daughter also had exomphalos and she described the emotional support and shared knowledge that she found online as invaluable. “It’s asking a forum of parents who’ve been through exactly what you’re going through. It’s like sitting in a room with 500 parents whose kids have got the same experience and the same problem.” 

Finding support online – negatives 

Others were wary of going online for support and information. They didn’t feel they wanted or were able to share their experiences and were not strong enough to absorb others’ distress. Barbara said, “I felt like sometimes I wanted to share and then it was all just too raw”. She ultimately found that support from friends who helped cook dinners and look after her older daughter was what worked for her and her husband. Leanne’s daughter was diagnosed with Hirschsprung’s disease. She looked online in the early days but “it was just too much for me to take on at that time and I remember thinking I can’t cope with this.” Nicky’s son was born very prematurely and then developed necrotising enterocolitis (NEC)*. She went online cautiously as she knew there would be lots of “rubbish” as well as helpful information. In the early days she also found the “emotive content” more than she could cope with.
 

Nicky found reading other people’s stories too hard in the early days when her son was still very unwell.

Nicky found reading other people’s stories too hard in the early days when her son was still very unwell.

Age at interview: 39
Age at diagnosis: 39
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Most of it was by the staff and then I would go online but I went on very cautiously again with my background and I know there’s a lot of rubbish out there and you have to be very careful where you look. and I know the way that some websites are written, if they’re written by professional they’re written in a different way and it’s very factual and an emotional mother reading something that’s very factual statistics wise can be very difficult so I was very mindful about what I looked at and where I looked depending on my emotional state at the time or what I wanted to find out, what I needed to find out. And I didn’t rush to look at things in the early days either, probably because the team, the nurses and the doctors were just so very good at explaining things and giving you all the information.

So you felt like they were giving you all the information that you needed?

Yes, yeh there was very little that I looked up in the early days and also I didn’t feel able to look it was too hard, on the unit there were photos of babies and their stories, little summaries, I couldn’t look at those for weeks and weeks and even when we went back to [local city] I still found it hard and would still make me cry, probably if I looked at them now it would still be tough. So there was a lot of stuff that I felt I couldn’t engage with because it was too hard, somebody mentioned a website that they’d come across about pre-terms that had been put together by a couple of mums I think. And I had a very quick glance at it but I couldn’t look at any detail because it’s just too hard I was much better at processing and dealing with the facts rather than any emotive content and anybody’s personal story but that was just too hard. Even though I knew that there were positive stories there I wasn’t a 100% whether the one I picked would end up with a happy ending and it was too much of a risk to go there and look at that for a good while to be honest.
 

Matt and Donna’s son had Hirschsprung’s disease and they have found that they dismiss the information and stories they read online. They don’t want to be near all that worry.

Matt and Donna’s son had Hirschsprung’s disease and they have found that they dismiss the information and stories they read online. They don’t want to be near all that worry.

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And have you met any other parents, who’ve had Hirschsprung babies in the hospital or?

Donna: No not yet I’ve spoken to a couple cos we’ve been in over the weekend [Baby 1] had had to miss a couple of swimming lessons and I explained to the lady that runs the swimming group why she wasn’t there and she said we’ve actually got a little boy with that condition here he’s like five and she put me in touch with her, his mum and sort of she said, gave me a ring and spoke through sort of her story with her little boy but she said it’s sort of playing out a bit different she said but I’ve got a friend who’s got a little girl that sounds sort of quite similar the way sort of you found out with [Baby 2] and everything cos this little girl hadn’t to have a stoma fitted or anything. So I’ve spoken to them as well but again it’s just the, you sort of speak to people and it is, it’s just all different with, you sort of read people’s stories online and blogs and everything and there just doesn’t seem to be anyone that’s going, you know, that the same they’re all different in their own.

Matt: In that respect I’ve kinda dismissed all that stuff now, I know I’m in the groups and whatnot but I just ignore it now cos it’s just the same old worry and I just don’t want, I don’t know I just don’t really want to be near that worry if that makes sense, it’s again we’ve been unbelievably fortunate with [Baby 2] he seems so far he’s reacted very well doesn’t seem to be many complications you know, from reading the groups there’s some real challenging stuff that people have had to cope with and stuff and I just, I know it’s very selfish but I just, I don’t wanna think about it, you know, I said to you that we’ve, there’s stuff that I know just, you know, how hospitals run and what goes on and this that and the other and there’s stuff that I know that I never wanted to know, I didn’t know I didn’t want to know but I, there’s stuff that I know that I just, you know, I shouldn’t really know but it would be nice if we lived in a world where we didn’t know.
Finding support online - giving back

However many parents spoke very positively about the ongoing support they had found through online forums, and how they continued to contribute many years later as a way of supporting other parents faced with similar challenges. Jason and Lucy have a son with Hirschsprung’s disease “Obviously everybody is different but I do think taking other people’s experiences, taking those on board I think that does count for a lot. And I think we’ve learnt a lot off other people, and I like to think that we’ve been able to pass on some of that to others in our same situation as well.”

For links to information and parent support groups see ‘Resources’.
 

Hayley and Thomas had a son with exomphalos who died when he was 7 months old. They are still involved with the online forum, as they want to help others who are going through the same experience.

Hayley and Thomas had a son with exomphalos who died when he was 7 months old. They are still involved with the online forum, as they want to help others who are going through the same experience.

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Hayley: Yeah it was difficult but we also had the exomphalos Facebook group were we had lots of support and, you know, people talking about their stories and things like that.

I think you mentioned earlier that you got onto that during the pregnancy did you?

Hayley: 12 week scan.

Okay.

Hayley: Yeah.

And it was helpful from day one was it?

Hayley: From day one, I met my friend, [friend] through it, she was also pregnant at the same time and just the people that have been through things before, you know, just you’ve gotta listen to them and somethings were scary but at the same time you just think well they’re doing it so it’s, you know.

Thomas: I think you feel that crumb of comfort listening to these people that, and it wasn’t just you it was other people that had been through this and come out the other end with positive outcomes, it was more that they’d all been more positive outcomes than negative ones at that stage.

Hayley: Yeah, well, but I think that you kind of see that though, I think you see what you want to see. I think you might scroll through the ones you don’t want to see. It’s true though cos when he, when he came and he had other things I suddenly saw things that I hadn’t seen before.

Thomas: Yeah, I suppose.

Hayley: Yeah, which is a strange thing, yeah. But I think it’s very important thing to have to know that you’re not alone, you know, because nobody has heard of it, all your family they have no idea, and they don’t know what you’re talking about so when you’re saying all these words that now you understand, they still don’t have any understanding of it and it’s quite lonely like that isn’t it?

Thomas: Yeah I mean cos you had that forum, you could-

Hayley: Just yeah get all the words straight in your head and, you know, do your research, there’s not a lot of research out there obviously so that was the only place you could really ask questions really. Even down to like, you would ask what to pack in your hospital bag, these silly things, you know, how long before they get dressed and.

Thomas: I don’t think that you say anything on there that you don’t get an answer back on something, whether it be something that that is as simple as what she just mentioned there or whether it was a really serious medical thing, there was always someone that came back with a, with an answer or a train of thought to go into.

Hayley: Yeah.

Were there ever a negative place, difficult place?

Hayley: I think you have to, you have to read it right, you can’t take what everybody says as the truth that- nobody’s a doctor on there. And we have this kind of be rationale about it, you can’t just, oh my child’s gonna have this or, you can’t do that, you have to be very, you have to kind of choose your friends almost as well because some people you want to listen to, some people you don’t, which is, and then obviously when things, obviously for us when [son] passed away it became very intense and quite hard to listen to and stuff but that’s when it went a bit negative wasn’t it. 

Thomas: Yeah. Cos you’ve come off it now haven’t you?

Hayley: No I’m on the English one. The American one was very over saturated with people and lots of things.

Was there too many people on there?

Hayley: Yeah whereas the English one I find, I know the people, I feel like I know the people so I still want to know how they’re getting on and, you know, help others that are going through the same journey but the American one I found too, too much so I came off that.

Thomas: More people.
*Footnote definitions:

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.

Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

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). 

Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not fully develop 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 (pooing) normally.

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