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.
And does he have any lasting effects?
When he came home he obviously had NG tubes* so we obviously had to try and get him feeding. Cos he was obviously used to the milk we had to try and get him hungry so he ended going onto solids quicker than what a normal baby would, which he did perfectly. Ever since then everything’s been plain sailing. He’s literally a normal little boy now, he has a right character on him all he has is his ears stick out because when he was in hospital his ear kept folding over where he was always in bed so his ears stick out and one ear is lower than the other where they folded over, the nurse used to tell me off when his ears folded over cos I used to put sticky tape behind his ear. But he’s allowed to get them pinned back when he’s older, that’s his decision to make. He’s got a massive scar on his stomach and he’s got his gastroschistitis stoma balloon they can make a belly button for him cos he doesn’t have any belly button, they can make a belly button for him when he’s six years old but again that’s his decision. He has no diet, he’s not allergic to milk anymore, he’s literally a normal little boy, so there’s nothing wrong with him at all. He goes to nursery every day, plays with his friends, the only thing that he has is if he’s ill he’s more ill as in - like if he’s got a cold he’ll suffer, suffer a little bit more with it, I don’t know whether cos his immune system hasn’t come back yet if it’s he’s got low iron like I have which I should probably get him checked out actually he just sleeps and that’s it.
* Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.
Alison: It’s all worth it basically, all the, you know, it’s not an easy road, you know, even once the operations done, that’s not to say that another baby might have the operation and may be absolutely fine and not have any digestive problems but it’s all worth it, you know, [son] is a really healthy bright intelligent man, he’s done really well with his career and he has no health issues now so, you know, just stick with it it’s worth it in the end.
Anything to add to it?
Martin: Yes, yes I think it was there seems some a sort of light at the end of the tunnel when he got to four or five because he, you could see improvement in him and by the time he was six or seven he was doing everything well what everyone else was doing so..
Alison: Just normal child.
Martin: Just normal play, climbing, throwing, football, sport and yes came through it, came through it in the end.
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.”
So just describe to me, you know, the journey that she’s made from eighteen months to the little girl she is now?
Mike: She’s lovely.
Fiona: Yes.
Mike: She she’s very, very bright.
Fiona: Very headstrong.
Yes [laughs].
Mike: And headstrong so, whereas we’re both really sort of fairly shrinking violet type people. We’re not.
Fiona: [son] is the same.
Mike: And [son] is very similar to us, yeah. He’s a lovely boy but he’s very shy. [Daughter] is completely the opposite. She’s more of an extrovert. She’s very, as I say, she’s very bright and this is the thing that we’re quite pleased about because she’s there was, obviously, a risk of brain damage a couple of times. Because and that was one problem. Luckily, I think the worst time, was she was so young at the time. That any damage that was done, the brain just went a different route. So she would have developed again but we put loads of effort into stimulating her mind. And so she was played music. There was a chap who used to come and play. He was…
Fiona: He was a music teacher.
Mike: Yeah, he was a music teacher. He wasn’t a music therapist or anything along those lines.
No, no.
Mike: But I think he was very interested in that theory.
Fiona: I think on his lunch break, he taught at the hospital school and in his lunch break he would find children in the hospital. To play music to.
Mike: In intensive care.
Fiona: And in the ward and he used to come and see [daughter].
Fiona: Once a week. And she really benefited from that.
Mike: Yeah.
Fiona: And as she got older. She would shake a rattle with him.
Yeah.
Fiona: Which was lovely.
Mike: Even when she was out of it. The intensive care, you could see from the monitors that there’d be a notable spike. Whilst this was going on.
Yeah, yeah.
Mike: Which was interesting and I think this is why he was so keen to do it in that situation as well because he could see the results.
Yeah.
Mike: But yeah, so he stimulated her and she’s very bright as a result.
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.
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 realise and that’s what my worries for him is sort of growing up its sort of, obviously we don’t know how its gonna play out but if he’s not as normal as he can be with his bowel movements, you know.
Matt: It’s an embarrassing thing to have to deal with isn’t it?
Donna: Yeah and it’s a sort of a silent disability if you look at him he’s well he’s fine you wouldn’t know but he does have this disability with his bowel and, you know, we don’t know how that’s gonna affect him for life but it, there is a high chance it will have some effect on him and it’s, you know, he may need to use a disabled toilet if some point in the future he may end up with a bag and a stoma and he may have to go into a disabled toilet to empty it but to look at him people wouldn’t know that and it’s I guess he’s got, we’ve got to teach him to have a thick skin and just to not care about what other people think. But yeah it’s, that’s my way forward it’s not an obvious problem. And then what, you know, further down the line when he comes to have children and things it’s that’s what you’ve got to deal with.
* 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.
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.
Lucy: And so it’s December isn’t it and we get admitted to hospital, [son]’s begging the consultant he said to him, he went ‘For Christmas I want Mr Blob back’ and he was begging for it wasn’t he, he knew how unwell he felt and regardless of all the complications we had with the stoma with the prolapsing and the leaking bags he just, he knew that that was what he wanted and he was so fed up. But we didn’t have confirmation did we that we were going to get it until after Christmas.
Jason: February
Lucy: So we were in hospital because he was so poorly and we were having the rectal flush outs, we were in hospital and we got discharged Christmas Eve and then we went back in the day after Boxing Day didn’t we, so we managed to be at home Christmas Day, Boxing day so we had two days and we were like oh this is, without having a flush out. Then we went really early didn’t we the day after Boxing Day and he was, we just managed to get through Christmas that was kind of a close one really and then up until they could, because our surgeon wanted to do the operation, so our new consultant wanted to do the operation himself he didn’t want it to be done as an emergency surgery because he wanted to make sure he and his best team were around him. So he arranged the surgery for mid-January.
Jason: Was it mid-January?
Lucy: Yeah it was mid-January so that he could be there and have everyone that he needed supporting him so then we, it was always again put down as a temporary stoma so that they could see what was going on and that was fitted, so we’re in two years now, January 2014 he had his ileostomy put back in and it was just one stoma this time so there was no distal end the distal end was attached inside onto the back of the stoma and he recovered really quickly again, out even quicker than the first time. And he was really, really happy with it like it was literally what he wanted wasn’t it?
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.
To be honest [son] would never speak to them before, he would never speak to any hospital staff because he just assumed that he was going there to be hurt. But in the last year it’s sort of shifting because when he goes there now, nobody apart from when he had a blood test the other week apart from that, you know, every time we go there’s no pain involved so yeah his idea of hospital is actually shifting and we have got an appointment to see the surgeon on, in December so I think he will be very chatty. The nurse, the gastrostomy nurse that is always there when the tube changes were happening he would never talk to her at all and then about six months after he went to a different tube he saw her, we saw her in the corridor and she, he never shut up she was just like amazed that he was actually talking to her and not just blanking her.
Yeah. And how often are you going there now?
All the time, he lives there.
Still?
Yeah cos he’s cos he’s got under so many different people we, you know, really we’re a good thing is, you know, they all get together and say let’s do [son] on that day. So the, a couple of weeks ago we had three appointments in one week then the following week we had two appointments, he’s got one on November 2 and then he’s got another one on December 7 but I think cos he’s now, [son]’s now under a psychologist as well and a play specialist because he, obviously he’s been through so much and he, [son] needs a reconstruction of his airway down at Great Ormond Street, they’re the only hospital that do it because obviously they specialise in children. And he’s not, he’s not on board with that so he’s now under a psychologist as well to talk about it and talk about his fears and hopefully we can, you know, move him forward.
When does he, if he was on board with that when would he be due to have it?
As soon as soon as they arranged it. They wanted him to go on November the 4 and 5 to have some tests but I mentioned it to [son] and he completely broke down so he needs the play specialist and the psychologist here to do, because he was meant to have, he had blood tests not last week but the week before and he was meant to have that in June but he just completely had, he was hysterical so he’s had a lot of work put into him between then and the other week and that’s what needs to happen.
So you’re able to get him to hospital and then he gets upset there or?
No
Is it when you start leaving here?
He starts crying, he’s, you know, he’s crying the night before, he’s just.
Yeah, every time he goes?
Not, it used to be, not in the last sort of like six months because he sort of trusts now that he’s not going for a pain reasons. He was upset when he was going for the blood test and even though cos he had the cream on and he and the play specialist had a book in front of us so we were doing ‘Where’s Wally’. And then the nurses were like he was crying hysterical, hysterically and the nurses had like a tube of blood and [son]’s like oh and he was just so, [son] never ever stops talking. And after that he was completely, he was completely speechless, the play specialist was like I’ve never ever seen you speechless before [laughs]. I don’t think, I think he was in shock to be honest that it actually had happened and it didn’t hurt so yeah.
He’s got a lot to get over hasn’t he?
Yeah, oh definitely.
Lucy: We’ve been very open with him in the last two years about his stoma and about him having it. And we kind of have come to a mutual agreement as a family that until he has a desire to not have his stoma that we can’t force him to have that surgery knowing that there’s a chance it won’t work and with all the complications. And we’ve said to him, you know, if there’s a point that comes where you don’t like having Mr Blob then, then we can start talking about what other things we could do but we can’t force, we’ve said to him unless something is urgent we won’t force anything medical onto him unless it’s gonna be the right thing for him. He’s got a few issues that he’s having to deal with he remembers being pinned down and having a lot done against him so he’s actually now in the process of having Cognitive Behavioural Therapy to try and deal with his anxiety around medical issues. So that going forward he can have intervention if he needs it but for the time being we’re avoiding as much as possible unless it’s life threatening and really required and, you know we’ve said to [son], if something has to be done we’ll have to do it but if you have a choice then we’ll try and give you a choice and we’ll try to give him a voice again because for the first, you know, four years of his life he had no voice, he had no choice and it’s.
Jason: And certainly for the first couple of years of his life we didn’t either, we just went with whatever the surgeon told us but we’ve now taken more control over it.
Lucy: Yeah I think the consultant changing, the changing of the consultant we’ve taken a more active approach. We’ve gone right okay well we know him and his history better than you. We kind of went along with the flow a bit more maybe. We haven’t got as much of a rapport with this consultant.
Jason: I think when obviously in [son]’s situation our first consultant was there to save his life, bottom line was to save his life so you go with whatever he says and, you know, looking back on it I think things could have been done differently certainly we could have avoided the problems when he had the tummy bug, there could have been more intervention but I think moving forward we’ve decided that as a family, including [son] we’re gonna make the decisions.
Lucy: And we all have a voice now don’t we, we feel confident in the choices that we make that actually we’ll do what’s right for us. You telling us to do something does not mean that we’re gonna do it, we will look into it and choose as a family what’s best for us and not just going with what your procedure is. And that’s one of the things that really bothers me is that I feel that often a stoma is seen as unsuccessful in the treatment of Hirschsprungs* and it’s almost like they want to repair him and it’s like he’s not broken he doesn’t need fixing he’s happy and he’s not on any medication, he’s confident and he’s progressing and he has a stoma and he’s doing all that. If we take that stoma away he could have a completely different life and there is a chance that could be a better life but that isn’t guaranteed it could be so much worse, you know.
Jason: Absolutely.
Lucy: All the medication he was on before and not having to do any of that is.
Jason: I suppose really going forward we’re kind of hopeful that things can change and develop within the treatment of Hirschsprungs and that by the time [son] is in a position to make his own mind up as to what he wants to do that there will be better options open to him. I think for now obviously him having the stoma it’s all about just keeping things nice and steady for him.
Lucy: We might reveal we’d like to show him role models that have stomas and, you know, we’ve been quite lucky that we got to meet Blake Beckford who’s an athlete and model that has a stoma and has accomplished, you know, rather amazing things and has had loads of other complications so we try and create that role model in that you, he can achieve anything but it shouldn’t stop him from doing anything and…
Jason: He certainly doesn’t, he certainly doesn’t strike me as being somebody that thinks his stoma gets in the way.
Lucy: He’s not a victim about it.
Jason: No.
* 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.
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.
Because, when [daughter] had her procedure done when she was six months old to actually get rid of what was left of the exomphalos*, the muscle closure wasn’t very good quality. It was very thin muscle he said, so what happened and what he forecast happening was that, as she grew, she kind of grew a little hernia. So when she cries or shouts or whatever, she gets a bit of a bulge and it’s not a dangerous hernia in the sense that anything could get twisted, but its there. And he so, basically, there’s always been like this ongoing discussion on whether that needs to be fixed or not because the hope was that it would stay the same size as it was when she was a baby.
And then it would almost be, you know, nothing to worry about. But actually, it’s grown with her so the issue could be potentially, if she had children, that, you know, that could cause problems because she’ll basically have a weakness in her in her tummy. So she actually loves it and calls it Christopher, which is a bit of an issue because she’ll go, “I don’t want to get rid of Christopher.” And I think, “Oh, I know you love Christopher.” I think I might have overdone that I love my tummy business because I wrote a little book for her and stuff and, you know, we used to kiss her tummy goodnight and that kind of thing and I think we may have overdone it [laughs]. I need to start going, “Christopher is bad!” But so we, we only saw, I mean we saw him last year and then we are going again when she’s about thirteen, fourteen, so that’s another four years.
And how has she coped with all of these, because I mean presumably she has no memory of the exomphalos but she will have memories of all these periods of hospital? I mean how has your daughter coped with it all?
She actually quite likes it. I think she likes it because it makes her feel special [laughs]. And I think it is just she’s quite extrovert and I think it’s very lucky that it was her that got exomphalos and not my older daughter because she’s very quiet, very introverted and I actually think she would have found the attention and having the focus on her really quite traumatic.
While my little one just loves it and it’s kind of what she’s used to. Because she’s always had health problems, that’s what her life is like and she actually is a very healthy, happy kid, who has these problems and, you know, it’s like, you know, she doesn’t have a belly button. But she just says, “Well, loads of people have got belly buttons, you know. They don’t, they’re nothing useful.” But she says, “Oh, you know, it just makes me a bit different from other people.” And I think that’s quite good [laughs]. So she she’ll say, “Oh I think, you know, other kids think I’m a bit of a celebrity.”
Has she come in, has she had a rough time at all with that? I mean has she had any bullying or bullies at school?
No. She’s had the odd person, I mean I think because, before she went to school, she didn’t, she did go to play group a bit. But she didn’t go to nursery and she didn’t, you know, all of that stuff that my younger daughter did, you know, I never used to take her to toddler groups or anything because she used to just get ill.
Yeah.
So when she was that age, when kids I suppose don’t have any sensitivity at all and just go, [whoa] you know, she wasn’t really seeing other kids that much, who she didn’t know. And then at school, you know, she gets changed and things and people have asked her about it and she always just says, you know, “I was really poorly when I was a baby.” And she’s had a thing where people have refused to believe her. But she said an interesting thing to me. She said, “I use it to assess people’s personalities.” So she said, “If I show people my tummy and, or I tell people about my tummy, and they just refuse to believe me or they say I’m being silly or lying whatever, I just think that they’re not very clever people and I don’t really want much to do with them.” And I was like, “Well, that, [daughter], to be fair, most people do have belly buttons so I don’t think you should use it as a kind of, you know, like you’re in, you’re out thing. Maybe you could talk to them about it and kind of explain it a little bit more.” But no, she’s had, she’s not that I’ve been made aware of it anyway, she hasn’t had any problems with it and, as I say, she thinks it’s quite a good thing.
* 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.
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.
She was diagnosed with failure to thrive that first year of life and that was really hard for me to hear, you know. I was feeding her and I had heard from one of the health professionals, it’s very common with an exomphalos* baby to be very slight and but it was hard for me to have a child that had failure to thrive, you know. And I’m a social worker and, you know, I’m feeding my child and she, you know, she’s healthy but she’s so skinny and just wasn’t able to put the weight on. But then, you know, had gone, had started that life that way, had been so, you know, not been able to feed for, you know, for so long and so surreal. But it was but I think that’s one thing about the photos, about telling parents to take pictures. I think it’s important to document that time. It it’s hard but it’s nice to look back on them in a way, now, so you know, I looked at her I made this scrap book and it’s got one of the little monitors in there and it’s got you know, little things from the hospital that I’d taken away because it’s her life. It’s the reality. It’s how she was born and now she’s getting to an age where she’s aware. I remember her, about a year and a half ago, saying to me, “Mum, that person has a belly button.” And I said, “Most children will have a belly button.” I said, “If you find somebody who doesn’t, they’re very special like you are.” 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.”
I thought ‘Perfect’ [laughs]. That’s what I needed to hear. “That’s right, you are. You’re special.” And it was, it’s emotional but it was very nice to hear her and I thought I want her to always think that, you know. She wears a bikini now. You know, she was down at the pool last night in a bikini and I just think, be proud of your body. You know, you don’t have a belly button. They’d created one but, as she grew, it just flattened out and so she doesn’t have one and she has a, we call it her Harry Potter scar. She’s got a long scar down her tummy and she knows about it but she’s not interested. It’s just that she doesn’t have a belly button. One of the older children at her school said to me, “Oh the other kids know that she doesn’t have a belly button.” And I thought, ‘oh’, you know, this is a child that’s not in her class but the other kids know and I said, “Oh.” She said, “Yeah, we think it’s cool she doesn’t have a belly button.” I’m like, you know, [laughs] fantastic.
You know, I just I don’t want her to feel different. And it’s hard in those years growing up to feel that, you know, your different and, and she is different and it is unique and but I want her to celebrate that rather than being ashamed of it.
* 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.
*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.
Shanise’s son had gastroschisis. At age 4 she described him as a normal little boy.
Shanise’s son had gastroschisis. At age 4 she described him as a normal little boy.
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When he came home he obviously had NG tubes* so we obviously had to try and get him feeding. Cos he was obviously used to the milk we had to try and get him hungry so he ended going onto solids quicker than what a normal baby would, which he did perfectly. Ever since then everything’s been plain sailing. He’s literally a normal little boy now, he has a right character on him all he has is his ears stick out because when he was in hospital his ear kept folding over where he was always in bed so his ears stick out and one ear is lower than the other where they folded over, the nurse used to tell me off when his ears folded over cos I used to put sticky tape behind his ear. But he’s allowed to get them pinned back when he’s older, that’s his decision to make. He’s got a massive scar on his stomach and he’s got his gastroschistitis stoma balloon they can make a belly button for him cos he doesn’t have any belly button, they can make a belly button for him when he’s six years old but again that’s his decision. He has no diet, he’s not allergic to milk anymore, he’s literally a normal little boy, so there’s nothing wrong with him at all. He goes to nursery every day, plays with his friends, the only thing that he has is if he’s ill he’s more ill as in - like if he’s got a cold he’ll suffer, suffer a little bit more with it, I don’t know whether cos his immune system hasn’t come back yet if it’s he’s got low iron like I have which I should probably get him checked out actually he just sleeps and that’s it.
* Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.
Martin and Alison reflected back on the journey they took with their son who had an exomphalos, over 20 years previously. It wasn’t an easy road, but was definitely worth it.
Martin and Alison reflected back on the journey they took with their son who had an exomphalos, over 20 years previously. It wasn’t an easy road, but was definitely worth it.
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Anything to add to it?
Martin: Yes, yes I think it was there seems some a sort of light at the end of the tunnel when he got to four or five because he, you could see improvement in him and by the time he was six or seven he was doing everything well what everyone else was doing so..
Alison: Just normal child.
Martin: Just normal play, climbing, throwing, football, sport and yes came through it, came through it in the end.
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.”
Fiona and Mike described their eight year old daughter as a girl who was thriving despite her really rocky start in life.
Fiona and Mike described their eight year old daughter as a girl who was thriving despite her really rocky start in life.
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Mike: She’s lovely.
Fiona: Yes.
Mike: She she’s very, very bright.
Fiona: Very headstrong.
Yes [laughs].
Mike: And headstrong so, whereas we’re both really sort of fairly shrinking violet type people. We’re not.
Fiona: [son] is the same.
Mike: And [son] is very similar to us, yeah. He’s a lovely boy but he’s very shy. [Daughter] is completely the opposite. She’s more of an extrovert. She’s very, as I say, she’s very bright and this is the thing that we’re quite pleased about because she’s there was, obviously, a risk of brain damage a couple of times. Because and that was one problem. Luckily, I think the worst time, was she was so young at the time. That any damage that was done, the brain just went a different route. So she would have developed again but we put loads of effort into stimulating her mind. And so she was played music. There was a chap who used to come and play. He was…
Fiona: He was a music teacher.
Mike: Yeah, he was a music teacher. He wasn’t a music therapist or anything along those lines.
No, no.
Mike: But I think he was very interested in that theory.
Fiona: I think on his lunch break, he taught at the hospital school and in his lunch break he would find children in the hospital. To play music to.
Mike: In intensive care.
Fiona: And in the ward and he used to come and see [daughter].
Fiona: Once a week. And she really benefited from that.
Mike: Yeah.
Fiona: And as she got older. She would shake a rattle with him.
Yeah.
Fiona: Which was lovely.
Mike: Even when she was out of it. The intensive care, you could see from the monitors that there’d be a notable spike. Whilst this was going on.
Yeah, yeah.
Mike: Which was interesting and I think this is why he was so keen to do it in that situation as well because he could see the results.
Yeah.
Mike: But yeah, so he stimulated her and she’s very bright as a result.
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.
Donna and Matt were aware their son’s surgery was not a cure, and that his Hirschsprung’s disease was something he was going to have to live and deal with all his life.
Donna and Matt were aware their son’s surgery was not a cure, and that his Hirschsprung’s disease was something he was going to have to live and deal with all his life.
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Matt: Yes.
Donna: And that’s sort of the thing that people 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 its gonna play out but if he’s not as normal as he can be with his bowel movements, you know.
Matt: It’s an embarrassing thing to have to deal with isn’t it?
Donna: Yeah and it’s a sort of a silent disability if you look at him he’s well he’s fine you wouldn’t know but he does have this disability with his bowel and, you know, we don’t know how that’s gonna affect him for life but it, there is a high chance it will have some effect on him and it’s, you know, he may need to use a disabled toilet if some point in the future he may end up with a bag and a stoma and he may have to go into a disabled toilet to empty it but to look at him people wouldn’t know that and it’s I guess he’s got, we’ve got to teach him to have a thick skin and just to not care about what other people think. But yeah it’s, that’s my way forward it’s not an obvious problem. And then what, you know, further down the line when he comes to have children and things it’s that’s what you’ve got to deal with.
* 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.
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.
Jason and Lucy’s son begged the surgeon to have the stoma put back in. Life was much easier with it, than without.
Jason and Lucy’s son begged the surgeon to have the stoma put back in. Life was much easier with it, than without.
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Jason: February
Lucy: So we were in hospital because he was so poorly and we were having the rectal flush outs, we were in hospital and we got discharged Christmas Eve and then we went back in the day after Boxing Day didn’t we, so we managed to be at home Christmas Day, Boxing day so we had two days and we were like oh this is, without having a flush out. Then we went really early didn’t we the day after Boxing Day and he was, we just managed to get through Christmas that was kind of a close one really and then up until they could, because our surgeon wanted to do the operation, so our new consultant wanted to do the operation himself he didn’t want it to be done as an emergency surgery because he wanted to make sure he and his best team were around him. So he arranged the surgery for mid-January.
Jason: Was it mid-January?
Lucy: Yeah it was mid-January so that he could be there and have everyone that he needed supporting him so then we, it was always again put down as a temporary stoma so that they could see what was going on and that was fitted, so we’re in two years now, January 2014 he had his ileostomy put back in and it was just one stoma this time so there was no distal end the distal end was attached inside onto the back of the stoma and he recovered really quickly again, out even quicker than the first time. And he was really, really happy with it like it was literally what he wanted wasn’t it?
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.
Julie described how her son has spent so much time in hospital having treatments and test that he assumes he will be hurt, and is fearful about going in.
Julie described how her son has spent so much time in hospital having treatments and test that he assumes he will be hurt, and is fearful about going in.
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Yeah. And how often are you going there now?
All the time, he lives there.
Still?
Yeah cos he’s cos he’s got under so many different people we, you know, really we’re a good thing is, you know, they all get together and say let’s do [son] on that day. So the, a couple of weeks ago we had three appointments in one week then the following week we had two appointments, he’s got one on November 2 and then he’s got another one on December 7 but I think cos he’s now, [son]’s now under a psychologist as well and a play specialist because he, obviously he’s been through so much and he, [son] needs a reconstruction of his airway down at Great Ormond Street, they’re the only hospital that do it because obviously they specialise in children. And he’s not, he’s not on board with that so he’s now under a psychologist as well to talk about it and talk about his fears and hopefully we can, you know, move him forward.
When does he, if he was on board with that when would he be due to have it?
As soon as soon as they arranged it. They wanted him to go on November the 4 and 5 to have some tests but I mentioned it to [son] and he completely broke down so he needs the play specialist and the psychologist here to do, because he was meant to have, he had blood tests not last week but the week before and he was meant to have that in June but he just completely had, he was hysterical so he’s had a lot of work put into him between then and the other week and that’s what needs to happen.
So you’re able to get him to hospital and then he gets upset there or?
No
Is it when you start leaving here?
He starts crying, he’s, you know, he’s crying the night before, he’s just.
Yeah, every time he goes?
Not, it used to be, not in the last sort of like six months because he sort of trusts now that he’s not going for a pain reasons. He was upset when he was going for the blood test and even though cos he had the cream on and he and the play specialist had a book in front of us so we were doing ‘Where’s Wally’. And then the nurses were like he was crying hysterical, hysterically and the nurses had like a tube of blood and [son]’s like oh and he was just so, [son] never ever stops talking. And after that he was completely, he was completely speechless, the play specialist was like I’ve never ever seen you speechless before [laughs]. I don’t think, I think he was in shock to be honest that it actually had happened and it didn’t hurt so yeah.
He’s got a lot to get over hasn’t he?
Yeah, oh definitely.
Lucy and Jason sought out cognitive behavioural therapy (CBT) for their son to deal with his anxiety around his medical issues.
Lucy and Jason sought out cognitive behavioural therapy (CBT) for their son to deal with his anxiety around his medical issues.
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Jason: And certainly for the first couple of years of his life we didn’t either, we just went with whatever the surgeon told us but we’ve now taken more control over it.
Lucy: Yeah I think the consultant changing, the changing of the consultant we’ve taken a more active approach. We’ve gone right okay well we know him and his history better than you. We kind of went along with the flow a bit more maybe. We haven’t got as much of a rapport with this consultant.
Jason: I think when obviously in [son]’s situation our first consultant was there to save his life, bottom line was to save his life so you go with whatever he says and, you know, looking back on it I think things could have been done differently certainly we could have avoided the problems when he had the tummy bug, there could have been more intervention but I think moving forward we’ve decided that as a family, including [son] we’re gonna make the decisions.
Lucy: And we all have a voice now don’t we, we feel confident in the choices that we make that actually we’ll do what’s right for us. You telling us to do something does not mean that we’re gonna do it, we will look into it and choose as a family what’s best for us and not just going with what your procedure is. And that’s one of the things that really bothers me is that I feel that often a stoma is seen as unsuccessful in the treatment of Hirschsprungs* and it’s almost like they want to repair him and it’s like he’s not broken he doesn’t need fixing he’s happy and he’s not on any medication, he’s confident and he’s progressing and he has a stoma and he’s doing all that. If we take that stoma away he could have a completely different life and there is a chance that could be a better life but that isn’t guaranteed it could be so much worse, you know.
Jason: Absolutely.
Lucy: All the medication he was on before and not having to do any of that is.
Jason: I suppose really going forward we’re kind of hopeful that things can change and develop within the treatment of Hirschsprungs and that by the time [son] is in a position to make his own mind up as to what he wants to do that there will be better options open to him. I think for now obviously him having the stoma it’s all about just keeping things nice and steady for him.
Lucy: We might reveal we’d like to show him role models that have stomas and, you know, we’ve been quite lucky that we got to meet Blake Beckford who’s an athlete and model that has a stoma and has accomplished, you know, rather amazing things and has had loads of other complications so we try and create that role model in that you, he can achieve anything but it shouldn’t stop him from doing anything and…
Jason: He certainly doesn’t, he certainly doesn’t strike me as being somebody that thinks his stoma gets in the way.
Lucy: He’s not a victim about it.
Jason: No.
* 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.
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.
Jane’s daughter feels her scars make her feel a bit different from other people, in a positive way. She has developed strategies for talking to people who might be unkind.
Jane’s daughter feels her scars make her feel a bit different from other people, in a positive way. She has developed strategies for talking to people who might be unkind.
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And then it would almost be, you know, nothing to worry about. But actually, it’s grown with her so the issue could be potentially, if she had children, that, you know, that could cause problems because she’ll basically have a weakness in her in her tummy. So she actually loves it and calls it Christopher, which is a bit of an issue because she’ll go, “I don’t want to get rid of Christopher.” And I think, “Oh, I know you love Christopher.” I think I might have overdone that I love my tummy business because I wrote a little book for her and stuff and, you know, we used to kiss her tummy goodnight and that kind of thing and I think we may have overdone it [laughs]. I need to start going, “Christopher is bad!” But so we, we only saw, I mean we saw him last year and then we are going again when she’s about thirteen, fourteen, so that’s another four years.
And how has she coped with all of these, because I mean presumably she has no memory of the exomphalos but she will have memories of all these periods of hospital? I mean how has your daughter coped with it all?
She actually quite likes it. I think she likes it because it makes her feel special [laughs]. And I think it is just she’s quite extrovert and I think it’s very lucky that it was her that got exomphalos and not my older daughter because she’s very quiet, very introverted and I actually think she would have found the attention and having the focus on her really quite traumatic.
While my little one just loves it and it’s kind of what she’s used to. Because she’s always had health problems, that’s what her life is like and she actually is a very healthy, happy kid, who has these problems and, you know, it’s like, you know, she doesn’t have a belly button. But she just says, “Well, loads of people have got belly buttons, you know. They don’t, they’re nothing useful.” But she says, “Oh, you know, it just makes me a bit different from other people.” And I think that’s quite good [laughs]. So she she’ll say, “Oh I think, you know, other kids think I’m a bit of a celebrity.”
Has she come in, has she had a rough time at all with that? I mean has she had any bullying or bullies at school?
No. She’s had the odd person, I mean I think because, before she went to school, she didn’t, she did go to play group a bit. But she didn’t go to nursery and she didn’t, you know, all of that stuff that my younger daughter did, you know, I never used to take her to toddler groups or anything because she used to just get ill.
Yeah.
So when she was that age, when kids I suppose don’t have any sensitivity at all and just go, [whoa] you know, she wasn’t really seeing other kids that much, who she didn’t know. And then at school, you know, she gets changed and things and people have asked her about it and she always just says, you know, “I was really poorly when I was a baby.” And she’s had a thing where people have refused to believe her. But she said an interesting thing to me. She said, “I use it to assess people’s personalities.” So she said, “If I show people my tummy and, or I tell people about my tummy, and they just refuse to believe me or they say I’m being silly or lying whatever, I just think that they’re not very clever people and I don’t really want much to do with them.” And I was like, “Well, that, [daughter], to be fair, most people do have belly buttons so I don’t think you should use it as a kind of, you know, like you’re in, you’re out thing. Maybe you could talk to them about it and kind of explain it a little bit more.” But no, she’s had, she’s not that I’ve been made aware of it anyway, she hasn’t had any problems with it and, as I say, she thinks it’s quite a good thing.
* 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.
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.
Amy made a scrapbook which will help as she talks to her daughter about how she is different and unique as a girl who had exomphalos.
Amy made a scrapbook which will help as she talks to her daughter about how she is different and unique as a girl who had exomphalos.
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I thought ‘Perfect’ [laughs]. That’s what I needed to hear. “That’s right, you are. You’re special.” And it was, it’s emotional but it was very nice to hear her and I thought I want her to always think that, you know. She wears a bikini now. You know, she was down at the pool last night in a bikini and I just think, be proud of your body. You know, you don’t have a belly button. They’d created one but, as she grew, it just flattened out and so she doesn’t have one and she has a, we call it her Harry Potter scar. She’s got a long scar down her tummy and she knows about it but she’s not interested. It’s just that she doesn’t have a belly button. One of the older children at her school said to me, “Oh the other kids know that she doesn’t have a belly button.” And I thought, ‘oh’, you know, this is a child that’s not in her class but the other kids know and I said, “Oh.” She said, “Yeah, we think it’s cool she doesn’t have a belly button.” I’m like, you know, [laughs] fantastic.
You know, I just I don’t want her to feel different. And it’s hard in those years growing up to feel that, you know, your different and, and she is different and it is unique and but I want her to celebrate that rather than being ashamed of it.
* 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.
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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