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Parents’ experiences of neonatal surgery

Hirschsprung’s disease - waiting for surgery

After a diagnosis of Hirschsprung’s disease* there is likely to be a period of waiting. Surgeons may not want to operate immediately but rather to wait until the baby is 2-3 months old (practice is variable but the trend is for earlier surgery). Parents we spoke to were told that this was for their baby to have time to gain weight and be able to cope with the surgery better. Babies are not always discharged during these weeks, but all the parents we spoke to had been able to take their baby home, although doctors monitored their health. 

Doing bowel washouts

Babies with Hirschsprung’s disease are not able to poo properly, so their bowels need to be washed out manually, often 2 or 3 times a day in the short term. This involves inserting a thin tube into the baby’s bottom and filling it with warmed saltwater solution, several times a day. This was started in hospital by nurses, but parents in some hospitals were taught how to perform this procedure themselves so they could take their baby home. Vanessa lived quite close to the hospital and staff said she could either bring her son in every day, or she could do it herself. Luke and Angie had quite a battle to get staff to train them how to do the washouts. They had to do their own research and staff seemed unaware that in other hospitals parents were taught how to do the wash outs and allowed to take their baby home. They felt the staff dragged their heels but were really glad they persevered. Although it took a long time each day, it meant their son’s quality of life in those weeks was much better than it would have been in hospital.
 

Luke and Angie said the washouts did take a long time, and took over their lives. But they were far preferable to him being in hospital.

Luke and Angie said the washouts did take a long time, and took over their lives. But they were far preferable to him being in hospital.

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Angie: We’d get up and we’d get the kids breakfasted and then we would do his wash out and the wash out can take anywhere from about 20 minutes to an hour and, and we’re home educating our children so, you know, and so they were home so it wasn’t a case of getting them off to school and then doing it they were home. And, you know, we did a lot of stuff in between wash outs but I’ll be honest we, we spoke very clearly to them and said this is really important for him we both need to be able to concentrate on this procedure while we’re doing it and we need to not have any distractions and basically they watched some TV while we did his wash out and they were great, you know, the kids were fantastic, they were, you know, sort of not even two, no not even three and five.

Luke: It does kind of take over your day, you’re doing that, you’re doing that twice a day.

Angie: You do a wash out at 10:00 and one at 6:00.

Luke: And sometimes even three times a day if he was particularly distended, you know.

Angie: Yes it’s an hour and it could be an hour each time which is a lot of, a big chunk out of a day. And, you know, there were times when.

Luke: You can’t go anywhere really.

Angie: No you couldn’t, couldn’t go anywhere really but there were times when we were, cos we were job hunting for Luke and it’s just like well what job can he take, you know, what job can you take where he can be home, you know, we can shift the wash outs a little bit but we couldn’t shift them massively from the times that they were set up, so you know, what job can he do between kind of 11 ‘o’ clock when one wash out finishes and 6 ‘o’ clock when the next one starts.

Did it need two of you to do them?

Angie: Yeah.

Luke: Yeah absolutely it’s definitely two man job.

Angie: It is yeah it’s definitely yeah definitely a two person job. But yeah so.

Luke: But we did, I mean we did get to a stage of where we just started taking a kit in the car with us so we’d just wash him out whether we had to be. So we’d go out to a friend’s house and say can we borrow your bathroom for 45 minutes, you know.

Angie: Yeah I mean we, I think doing it that way was way preferable to him being in hospital I absolutely, I mean it was a pain.

Luke: But it’s not, it’s not an easy thing, it had to be said, I’m not saying it’s an easy thing.

Angie: No it’s not but then other kids have to be tube fed and, you know.

Luke: Yeah exactly yeah.

Angie: But actually his quality of life was so, you know, I just remember going out to places with people and they were saying but, you know, can you imagine actually if you hadn’t made them teach you he would be in a hospital right now and here he is and he’s on a picnic and, you know, and he’s sitting around and he’s having cuddles with people and he’s seeing his, you know sisters and we’re, you know, we’re just able to be a family. And that, it was worth it, it was definitely worth it.
Daunting times

This was a time that was daunting and worrying. Leanne’s baby came home for about 6 weeks and she said it was awful having her daughter ill at home. She felt totally unprepared to be looking after a baby with Hirschsprung’s disease. Although she was given very good support from a community nurse and her GP, they were scary times.
 

Leanne felt unprepared and scared to be looking after her ill daughter at home while they waited for her surgery for Hirschsprung’s disease*.

Leanne felt unprepared and scared to be looking after her ill daughter at home while they waited for her surgery for Hirschsprung’s disease*.

Age at interview: 36
Age at diagnosis: 36
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Did you feel like you were in a kind of limbo?

I felt totally unequipped to be looking after a baby with [daughter’s] condition. So the main fear was that she would get enterocolitis which is and infection in the bowel. Symptoms for that were a high temperature and things that normal babies can get through teething and or just, I mean if I could count the number of times [son] had a high temperature as a baby, you know, and the message to us from the hospital was if she gets any of these symptoms and you think she’s got enterocolitis get her to A&E it could be fatal. So I felt like I was living, especially in the early days when we came out of hospital I was living with this fear that any minute she could have it and I just felt like a, they kept saying to me you’ll know, you’re the mum you’ll know if she’s ill and I kept thinking how will I know, I won’t know, what if I don’t know? It was a real responsibility and there were things, I found I did find all the way along and it’s not a criticism, I did find with the hospital and all the staff they tell you what you need to know at that moment, probably for a very good reason but I found I was constantly unprepared for things and when she came home she got a hernia* and it was so scary I was changing her nappy one minute and then she started crying and this golf ball sized bulge came out of her stomach, I was so scared in fact that was after the surgery. But still all this time when we had just been released from hospital the first time discharged and then after the operation you’re very much in this state where you just don’t feel like you want to be without professionals with you.

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

* Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.
During these weeks babies were regularly monitored for weight gain and infections. 

Limbo

James and Clare’s son was diagnosed later than most other babies in our sample. So his parents only had to wait a couple of weeks until his surgery. They remember them as very worrying times, with the “odd intermission”.
 

Clare and James had two weeks before their son’s surgery, and focused on spending a special time with him. It felt as though they were walking a tightrope.

Clare and James had two weeks before their son’s surgery, and focused on spending a special time with him. It felt as though they were walking a tightrope.

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James: Yeah, I mean, we got discharged and I called to see because we had about two weeks we went down to the beach and we- it was a very odd period actually because it was waiting for something to happen, we knew that we were going to go to surgery, you know, he’d determined that it was Hirschsprungs* and ‘I’m going to do this procedure to have a pull through’ of course at that stage you didn’t know what it was so, you know, much [types with hands] first time of finding out [yeah look at all the various options but fine yeah that’s what he wants to do.] We had this really odd kind of intermission didn’t we were, well I don’t know about you, I always felt knowing the depth of the surgery almost felt like this was a, kind of a, he might well go into this and things might not go well. So we’re gonna have this two weeks, we’re gonna have a really good two weeks and we did lots of things didn’t we.

Clare: Yeah.

James: We’ve got a picture in the hall, there’s a picture I took of him when he’s strapped to your tummy on the beach, beautiful sunny day it was perversely great.

Clare: It did feel, it felt like walking a tightrope because we now knew what the condition was but we also therefore knew what the risks were and so it kind of felt like every day, you know, I was kind of aware- I have never particularly been one of those mums who stands over their children, checks if they’re still breathing at night kind of thing and, you know and I haven’t with our second either but I remember for that period of being much more like that, I wanted to just make sure that he was alright every second of the day and if there was any little thing and that, you know, by that stage they’d said to us about, you know, if you’ve got any doubts pick up the phone get in, have a wash out, you know, we can, we can treat it straight way sort of thing. 

* 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.
 

Clare and James were very nervous about handing their son over for surgery. The surgeon explained why the surgery was needed, and what it would entail. He was “spot on”.

Clare and James were very nervous about handing their son over for surgery. The surgeon explained why the surgery was needed, and what it would entail. He was “spot on”.

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Clare: Yeah and then I can’t remember whether it was then and there or if we’d, I know we’d sat down having understood what it was and written out the most enormous list of questions and, and I don’t know if it was at that appointment or a subsequent appointment but we took the list of questions in.

James: No you’re right, I remember.

Clare: And went through them with the consultant and actually again that was another thing that he very patiently sat and went through every single one of those questions, however stupid they were, you know.

James: How many times he’d heard them, no doubt.

Clare: Yeah and it didn’t.

James: He wasn’t fazed, he wasn’t awkward he was just ‘Okay, let’s do it’.

Clare: And even to, you know, we had questions in there that were kind of, does he even have to have the surgery is there another option, you know, can we wait, can we wait until he’s older, you know, we’ve got him this far now, you know, do, is it of any benefit for him to be bigger and stronger, you know, and all these kind of things and.

James: I think we even had survival rates, you know, is there a risk of death in surgery. Yeah it’s not something you want to say but I think it was, we sat down we said, you know, we have to be prepared we’ve got to sit down now and actually consider…

Clare: You know, we needed to understand the position and actually his, his honesty and how forthright he was with us in a very professional, very calm manner was really…

James: Spot on.

Clare: Yeah.

James: It was reassuring in the sense that he was confident in his replies to us.

Clare: Yeah it was that as well.

James: There was no kind of ambiguity umm and arr, you know, this might be difficult to answer, there was none of that, it’s that and I know that because I’m a bloody good surgeon. I mean he didn’t say that but you could tell.

Clare: He didn’t say as much but he definitely got that across yeah. 

James: Fine, good [phew].

Clare: I’m a real expert in my field, we just, you just knew and the confidence that, you know, because you’re handing over your most precious thing to this person who is going to put them under anaesthetic and disappear into an operating theatre with them and you hope they’re gonna come out the other side. So to have that level of reassurance.

James: Confidence, not arrogance, confidence not arrogance, got it absolutely right. If they’d been arrogant, that probably wouldn’t have helped but just that warm confidence in his responses just, for me and I think for you too was spot on, perfect answers, spot on.
Alert for infection

Parents needed to keep a close watch for any signs of infection, as there was a risk that their baby could develop a condition called enterocolitis. This is like a severe tummy bug and is characterised by the development of a big bloated tummy, explosive diarrhoea and fevers. It can make infants with Hirschsprung’s disease very unwell. Leanne said it felt like “a real responsibility”. Vanessa remembers being given a medical alert card so that she and her husband could look out for warning signs. Some parents did experience a sudden deterioration, and a couple had to rush their baby to hospital. Although Donna and Matt were also able to care for their son at home for the few weeks before his operation, he did develop enterocolitis at one stage. He had to be re-admitted to hospital for a few days and put on antibiotics. But on the whole parents who did have their baby at home felt the staff were very supportive, available for them whenever they had a query.
 

Matt and Donna had to rush their son to hospital with enterocolitis. But he was soon home again.

Matt and Donna had to rush their son to hospital with enterocolitis. But he was soon home again.

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Donna: And he was sort of saying about, because it was sort of getting warm then because he was a June baby and he was saying, you know, when its warmer, the, any wind he has it will expand in his stomach if it’s hot and, you know, it can make him very uncomfortable. So after 24 hours he come home and he’d kept all of the rest of his feeds down and his wash outs were good. And then we had a few weeks of doing wash outs ourselves and then he became really poorly quite quickly one day I’d noticed he was sort of being fussy and crying when I picked him up but he did, he sort of wasn’t running a fever and he’d sort of started messing around with his feeds and not taking his feeds properly and then by the time Matt got home, Matt come in and said, ‘Oh he looks quite pale’ and so we booked an appointment at the out of hours doctors just to get them to check him over.

Matt: Yeah

Donna: And then by the time – Matt again took him down cos I, at this point I still can’t drive cos of my section so he took him I think it was about 8 ‘o’ clock your appointment wasn’t it but you didn’t get seen till gone 9:00.

Was this at the GP or was it at the hos-?

Donna: Yes it was a walk in centre sort of the out of hours GP. Why we didn’t take him straight down to A&E I don’t know just didn’t sort of seem to twig with us did it.

Matt: Well, because he was, it was just that he was pale and lethargic.

Donna: Yeah, we just-

Matt: Which babies are very often.

Donna: Yeah so we, Matt took him down there and then I started packing the hospital bag as we’d sort of got into a routine packing an overnight bag for hospital. and Matt said, we’re, he rang me and said, ‘I’m going to hospital come down with my stuff’ and I pulled a load of sort of feeds, got some feeds for [Son] and by the time I got there I wondered what was going on. Cos I went in, got into the carpark and I couldn’t see Matt’s car and then I went into sort of the A&E reception and asked where he was and they sent me up to the surgical ward cos he was already booked in for his surgery at this point. And I got up there and they were all really confused as to why I was there cos they said, ‘He’s not here he’s down in resus’ so sort of that sent a bit of panic through me and I got down and by chance I sort of walked past the door and saw Matt at the end of the corridor and when I sort of got there they were trying to get into him and he was sort of, he’d gone he went downhill really, really quickly he was sort of dehydrated and they couldn’t get a vein, really, really struggling and to get, they wanted to get some bloods out of him to check everything and he, you then told me that you’d gone in via ambulance, yeah with the lights and the sirens.

From the walk in centre?

Matt: Yeah.

So they said you need to get to hospital?

Matt: The doctor there suspected he’d been, he’d had a perforation.

Donna: Yeah and he just sort of was up saline in pulling the saline out sort of bringing all the faeces out with it and just kept going and going and he was just pulling loads out and the consultant had turned up by this point and said, ‘If he doesn’t, he’s got 24 hours to respond to the antibiotics and to the wash out and if his stomach doesn’t go down or it doesn’t pick up then he’ll have to be having a stoma done’. So we sort of were all, needs must and everything but sort of we’d got sort of so far I didn’t want to, him to end up with a stoma if needs, if we could help it. Cos I know a lot of Hirschsprung’s* babies do end up with them. But we went to, got moved to the ward again, same ward and they, they carried on with the wash outs and he responded really well, he was back to his normal self probably less than 24 hours. After the fact that he was sort of so ill that night before and then the sort of next night he’s back to usual and his stomach had come down nice and soft and I think we were in for, he had to have his IV antibiotics for a few days so we were in for, was it three nights.

Matt: Yeah for the weekend 

Donna: Yeah over a weekend again. We got to come home and we were prescribed a bigger catheter so that’s when we sort of had a clue that it wasn’t going to be, I think the consultant had said to Matt one night that we might be looking at a case of long segment because obviously the catheter we were using wasn’t going in far enough to clear.

Oh right.

Donna: Clear all the any blockage so that’s why he’d sort of got backed up.

Oh so that’s, that had been the problem he had been backed up?

Donna: Yes and it had caused enterocolitis.

* 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.
*Footnote:

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.
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