Lucy & Jason

Brief Outline: Lucy and her husband Jason’s son was diagnosed with Hirschsprung’s disease* shortly after he was born. He needed several surgeries and currently has a stoma.

Background: Lucy is 33 and married to Jason aged 48. They have one son.

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Lucy and her husband Jason were expecting their first son. He was born at 43 weeks by an emergency caesearean. He seemed well at first, but on the second day he started to vomit green bile. Nurses took him for an x-ray and they realised there was a problem. He was soon diagnosed with Hirschsprung’s disease* and Lucy and Jason were told he needed an operation to remove the section of bowel that was not working properly. But not for a few weeks, until he was bigger and stronger. So in the meantime, were taught how to wash out his bowel, as he could not poo properly, and were able to take him home for a few weeks until he was big enough for surgery. 

When he was 6 weeks old he was called back in for surgery. While Lucy and Jason had had meetings with the surgeon, but he was not able to tell them how much bowel would need to be removed until after the operation. In the end it was between 15-20cm. He recovered well from the operation and was sent home aged 7 ½ weeks. He made a good recovery and all seemed to be going well until he picked up a stomach infection when he was 1 ½ years old which was the trigger for further bowel problems. He suffered from a painful bloated stomach and it became clear that there was an intestinal blockage. He was admitted to hospital for bowel wash-outs and medication. He was also given botox injections to relax the sphincter, which only worked in the short-term. Surgeons suggested that he have a stoma* fitted for a few months to give his bowel time to rest and heal. This worked very well and he coped very well with it. When the stoma operation was reversed he again developed problems, so at 3 ½ years old he had a further operation to reinstate the stoma. At the time of the interview, their son was 5 years old and thriving at school. While there is discussion with the surgeons about trying to remove the stoma, Jason and Lucy do not feel there is any rush at the moment while their son’s quality of life is so good.

*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.

* Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out on to 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.

Jason was greatly reassured by the surgeon who visited NICU* in the early hours of the morning. The surgeon was confident it was Hirschsprung’s disease* and explained that it was fixable.

Jason: I had no idea what was going on so it was about half past one in the morning I went back over to intensive care just to check in on [son]. And out of the shadows comes the consultant from nowhere it was like where did you come from, fantastic guy can’t speak highly enough of him, absolute legend but he’s now retired unfortunately so. And he came over and explained what he’d seen on the x-ray and explained what he felt would be, was the problem. And then said if you could be back here for half past seven in the morning I’m back in and I’ll come over to your wife and we’ll sit down and he went through it all with her as well, so it was all diagrams and explaining exactly what he felt the problem was.

So he came over to where Lucy was, in your room?

Jason: Yes.

Lucy: So he came over to the ward that I was on and so that he could explain to both of us what he thought potentially the problem was.

Jason: Yeah.

Lucy: Drew us some diagrams and then kind of told us to go away and look into it a little bit ourselves to get a little bit more information, I think he was probably quite confident at that point cos he’d given quite a specific diagnosis.

Jason: He just explained that they’d have, they’d have to do a biopsy just to make sure that they knew what it was.

Lucy: Yeah.

Jason: But then obviously reassured us that, you know, it’s something that can be treated, that there’s a huge success rate and all the rest of it. We just went with the flow didn’t we, just went with it.

Lucy: We did yeah.

Jason: The most important thing for us was that he was gonna be treated, that he was gonna be okay that they could do something for him so that, that took a hell of a weight off of us.

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

*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.

Lucy and Jason became very skilled at performing the rectal flush outs their son needed. Daily life revolved around them.

Lucy: But our lives still revolved around rectal flush outs, because he had to have them twice a day because he couldn’t clear himself at all.

Jason: Yeah.

Lucy: Everything worked around that any time we wanted to go out, you know, it had to be 12 hour intervals so I think we used to do them at like 9 ‘o’ clock didn’t we, used to try and do 9:00 and 9:00 so that if we needed help we could get someone round to help us. But they’re relatively easy.

Jason: We didn’t need any help because he used to sleep through them. 

Wow, okay

Jason: He didn’t struggle at all he quite enjoyed it didn’t he.

Lucy: Yeah. It’s weird though cos now when I think about it my mobility wouldn’t have been great at the time with being quite soon post-surgery but it wasn’t actually that complicated then was it when he was so little.

Jason: No.

Did you feel confident doing them, felt like you’d been well trained in the hospital and?

Lucy: Yeah I’ve never been squeamish I’ve got a background in biology a bit of dissection and stuff and I’ve flushed out rat intestines in the past as part of my degree so it didn’t really faze me at all I was like alright, okay yeah I can do that we can give him a flush out on the dining room table.

Jason: No you always lead the flush outs I was the guy who was handing the bits.

Lucy: He passed everything to me.

Jason: Yeah.

Lucy: I always found it a little bit, it did freak me out a little bit when I pushed the tube and you could see it poking out the side of his stomach I was like.

Jason: You wondered if it hurt him.

Lucy: Yeah I was like oh I don’t like this but, because he was so relaxed and you could see the difference, you know, he went from having a massive extent, you know, distended tummy and you could see it going down while you were doing it so you knew that it was the best things for him and yeah if wasn’t too bad at all really, little bit messy at times.

Jason: No issue with it at all.

Lucy: I got competitive with how much we could get out didn’t we?

Jason: Yeah.

Jason and Lucy’s son begged the surgeon to have the stoma put back in. Life was much easier with it, than without.

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?

Lucy and Jason sought out cognitive behavioural therapy (CBT) for their son to deal with his anxiety around his medical issues.

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.

Jason and Lucy didn’t know they were eligible for disability living allowance when their son was ill, and estimated they missed out on almost £20,000 of support.

Lucy: Yeah. And we didn’t know about being able to choose our own supplier either when we left the hospital we were, they gave us the details of a delivery company the supplier and until he had his second stoma we didn’t know that we could choose our own one, we were having loads of trouble with the supplier, they were throwing our supplies over the back gate when it was raining so the boxes were getting wet and I was calling them and I was like ‘I can’t use stoma bags that have been outside in the rain you’re gonna have to re-send them’ and we had loads of trouble but just knowing things like that and one of the other things that we didn’t know about until [son] had his stoma was that we could have claimed disability. And that’s something we try and tell as many people as possible about.

Lucy: We very nearly lost the house didn’t we?

Jason: Yeah we did it was touch and go.

Lucy: We pretty much lived off handouts from our friends that gave us money so that we didn’t lose our house and if we had known about that we could have had that support it would have just kind of given us a little bit of help but we had no idea and that comes back to the fact that we were in [local city] and we were dealt with [city] because when we got discharged from hospital when [son] had when he, after he was born so when he was two weeks old when we came back we never had a health visitor because [son] had complex medical needs we had someone call up, a health visitor call up but she was only covering the area temporarily and she left a rather amusing voice mail didn’t she which we still giggle about now.

Jason: Oh yeah.

Lucy: The voice mail was ‘I’ve been asked to call you, I don’t know why if you wanna call me back’ and we were like ‘Because I’ve had a baby that’s why’ [laughs] and she came round once didn’t she and pretty much just said, ‘I don’t deal with this area you won’t be seeing me again if you’ve got any problems go back to [city]’ and that was that. So until he had his stoma and we started looking at support groups it wasn’t until then that we were like ‘Oh all these people are like, you know, claiming disability living is that something we could do?’ and they were like ‘Yeah you could have been claiming it since he was born’ and then we looked into it and we were able to claim it and yeah it would have kind of made a massive difference.

Jason: That would have done, yeah without a doubt, hey ho we got through it.