Leanne

Age at interview: 36

Age at diagnosis: 36

Brief Outline: Leanne’s daughter was born naturally and all seemed well. But it soon because clear she was not feeding well. She was diagnosed with Hirschsprung’s disease* and had surgery on her bowel when she was 8 weeks old.

Background: Leanne is married with a son and a daughter.

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Leanne was expecting her second child, a daughter. She had had a difficult pregnancy with hip and pelvic pain, but the delivery went well. Her daughter was born by water birth, and seemed bright and healthy. They went home after a few hours. But once home, the baby was sleeping a lot, not feeding well and vomiting a lot of mucus. So Leanne and her husband grew concerned and took her to see the midwives at her local GP, who advised that she should go straight back to hospital. 

In hospital, paediatricians and surgeons were concerned there was a problem with her bowel, and x-rayed her to try and diagnose the problem. At first surgeons thought they might have to operate to establish what was wrong, but on further examination of the x-rays they decided this was not necessary. They took biopsies for a condition called Hirschsprung’s disease*, the results took a week to come back. Meanwhile Leanne and her husband were able to take their daughter home to wait for the results and next steps.

As their daughter’s bowel was not working properly, and she wasn’t able to poo, Leanne and her husband were taught how to do wash-outs of her bowel. But her condition deteriorated at home so they went back to A&E after a couple of days and decided to stay in hospital until the results of the biopsies came through. After a week, Hirschsprung’s disease was confirmed. Their daughter was not able to have her surgery until she was 8 weeks old, so she was cared for at home with support from community nurses.

Their baby’s surgery was 5 hours long. She stayed in the hospital for a few days to re-establish breastfeeding and then she was able to go home. Leanne said it was very challenging looking after small baby, post-surgery, in the early weeks. At first she went for weekly check- ups with the surgeons at the hospital but these were soon spread out to fortnightly as she recovered. Leanne was interviewed when her daughter was just a year old. She has been developing well, is attending nursery and appears bright and well. The next challenge will be potty training in a couple of years’ time.

* 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.

Leanne waited with her daughter in A&E for a couple of hours, and was then shocked to be told the surgeons were coming down to see her. They were told it might be Hirschsprung’s disease and given a leaflet.

Yeah no it wasn’t a paediatric A&E. So yes so that say that was two and a half hours of screaming and that was awful, you know, just bright lights, alarms going off everywhere it was really stressful and my husband soon turned up about half an hour later. And yeah and then the next thing I remember was them saying the surgeons would be down from [children’s] Ward and I just remember thinking surgeons, what.

No-one had talked to you about surgery?

No it, it literally just been trying to get the cannula in and doing the you know, checking whatever they check, blood pressure, sugar level I’m not sure, the standard the OBVS they call it don’t they, so that’s all they’d been doing and then the next thing it’s the surgeon will come and see you. And that at that point I was really thrown into shock I suppose because I didn’t think for one second, you asked me whether I knew it was bad I didn’t think we were talking surgery here. And I kept saying to them ‘What do you mean surgeons, what do you mean,’ and I guess it’s just so every day for them they were just saying, ’Well he’ll come down ask you what’s going on, have a chat to you,’ so it was just waiting there and it was getting really late and, and finally a couple of surgeons turned up and they explained that they, there was a problem with [daughter’s] bowel and they needed to work out what it was. So they were going to take her to [children’s] Ward. So we all went across to [children’s] Ward and then she very quickly got onto the x-ray table and they started trying to x-ray her but of course she was too tiny to really have anything to show up so they were putting coloured solution in her so that on the on the screen it would show up all her bowel and her tubes would all show up. And she was just so sweet and like she was just lying on the table little eyes open just watching what was going on and at this point she had wires in her and oh it was awful. and they couldn’t work out from the x-rays what, what was wrong and at that, when you try, I mean they’re busy they’re working against the clock because at this point they did explain that we were the highest risk because it’s a new born baby not feeding you know, so we were the highest priority. So you can’t really interrupt them to say, you know with all your questions, you have to let them do what they’re doing. and there wasn’t really time to sit down and be explaining things to us so we were just watching what was going on and there were phone calls and they eventually got another registrar another surgeon in from another ward who was a specialist in reading these pictures cos they just couldn’t tell whether it was a twisted gut or anything. And so anyway, so this other surgeon was on his way to look at the picture and I think until that point they’d decided they were going to have to operate to find out, they said if they couldn’t find out what was wrong they would have to operate and look inside [daughter] to find out. That’s right because I remember, I remember when they said to us sorry, because it’s a long time, its a year now, so this is like, so they’re looking at the pictures and they couldn’t work out what’s wrong and then that’s, they took us to a room on [children’s] Ward and they wanted to just do a bit on their own I think, if they could felt like they were under pressure we were there and what... So we were now not with [daughter] and they were trying again to get the right pictures and then they came in to see us and so they said that it was now a matter of working out whether she needed emergency surgery and that they had called for this other surgeon to come and look at the pictures. Luckily this other surgeon looked at the pictures and was able to tell very quickly that it wasn’t anything that needed immediate surgery which was great news to us but it didn't mean that she was okay it just meant, it didn’t mean that she’s going to avoid surgery it just meant they don’t need to look inside her to see what’s wrong. 

Leanne described what surgeons told her about the surgery for Hirschprung’s disease might entail.

So we were still in the hospital at this point because we’d stayed in that second time they came to see us one morning and gave us the results.

Yeah, and what surgery was it that they told you about then?

So they explained to us that she had part of her bowel wasn’t working because it had no nerve endings so with a Hirschsprungs* baby you don’t know how much of the bowel has no nerve endings until the point the surgery starts because they start the operation with the biopsy’s on the tummy to see how many, or biopsies on the bowel to see how much of it is good and how much is bad. So they had to prepare us for the worst possible case which was a 24 hour operation with two surgeons and the removal of the whole bowel. But we were all quite hopeful that it wouldn’t, that she’s a mild case because she was reacting really well to the wash outs, she hadn’t had any infections and she was looking really healthy as well and there were all signs when we did the research indicated that it would be a mild case. And I think the surgeons and everyone in the hospital thought that but nobody wanted to say it, none of us because we didn’t want to tempt fate or say anything that would give anyone false hopes. I had, we all had this feeling that we were all thinking it’s not going to be 24 hours and she, but nobody wanted out say it. And yeah so they take the bad bit of bowel out and then they do pull through surgery to stretch the bowel down so the rest of the bowel picks up the bit of job that the bad bit did.

Okay so how, how old was she when she was in?

So they had to do it at eight weeks old.

* 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.

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

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.

Leanne found that she had held it all together until her daughter’s surgery day, but found the aftermath really difficult to cope with.

So after the surgery, I think when your child is going to have surgery you do everything you possibly can to stay strong until that point and there’s adrenalin and there’s support from lots of different sources right up to that point and the surgery happens and almost a lot of that support goes away and you’re left thinking well you, for me I knew I had to be strong up until the point of the day of her operation, I didn’t realise I would have to keep being strong, so strong afterwards. So and I think a lot of the community nurses and the health visitors were all, we all had this date in our minds and on that date [daughter] would be fixed and it was not like that at all. We came back from hospital after her operation and that was when we had the suspected hernia’s*, greater risk of bowel infection and the things that we weren’t told like [daughter’s] bowel was going to be hyperactive after the surgery and her poo would be very acidic. So what we had to use was a mixture of a barrier cream and an alkaline cream to save her skin because it burns the skin, and keep changing her nappy like every ten minutes. And that was, it felt, it doesn’t sound it but that was quite stressful because every time she was constantly going to the toilet and her skin was getting all burnt and that was awful. We had no idea that things like hernias could happen and they then told us when she had the hernia or when it was a suspected hernia that that could involve another operation and this was just a few days after surgery so that is quite hard to handle. And so all of these things and I think I certainly started to find it really hard after surgery I was really feeling quite weak and emotional and how long do I need to be strong for because I've done everything in my power to be strong up until the point of the surgery and actually after the surgery was really difficult as well. Dealing with a baby with, you know, wounds and then the other thing we weren’t told until after the surgery was the bowel the bowel can shrink and I guess then you’ve got the scar tissue so it can shrink the skin surface so effectively [daughter’s] bowels could start shrinking and all the pipes could become thinner and she would be constipated, and that happened. You have to use a dilator with her every day which is like a metal thing that you poke up her bottom to make sure it doesn’t shrink but it did shrink. So then we had to and again the worst possible outcome there is more surgery to stretch the bowels. So we had to use a bigger dilator and do it more often and those things were really, really awful.

* 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.

Leanne remembers very clearly the day she took the emergency phone numbers off the fridge and unpacked the hospital bag. It was a really good day.

The high point throughout all this year was the 1st November for me because we took down all the emergency numbers from the fridge because my life had been literally a hospital bag packed and our fridge had, you have the surgeons number, there’s [children’s] Ward you know, all these out of hours numbers and the fridge is just one of those places kind of centre of the kitchen isn’t it and you’re always looking at it, always on my mind. And just that day to be able to take down all the emergency numbers felt like we’d really, it was a really good day I’ll never forget it.

Leanne steered clear of online support groups and forums, as she thought the extreme cases she might see would worry her unnecessarily.

We’ve steered clear of them for the reason I mentioned earlier about just it seems to be very extreme cases that that use support groups and there’s every chance that [daughter]’s a really mild case and I just think that if I learn about all the things that an extreme case can suffer from I’m just going to worry that she might experience those things herself. So when I went to that, the bowel research group thing recently in Birmingham I did, I was aware I think that I was the only parent in the room that wasn’t part of some kind of support group and I did think maybe it would be helpful. But they did talk about a day out for all the children with bowel issues, I just don’t know if it’s for us because I think I’m really hoping that [daughter]’s going to lead a very normal life and I don’t, I just don’t know whether taking her for a day out with children that have really severe bowel issues, I see that there’s support in it but I think maybe, I don’t know, if it’s for us. Until I know if she is a severe case further down the line then maybe she would get something from that but I want her to feel as, I don’t like to use the word normal because other people don’t like it but I want here to feel as normal as possible and I don’t want to focus on that too much.