Matt & Donna

Brief Outline: Matt and Donna’s son was born by caesarean. He was fine at first, but then developed digestive problems. Tests revealed he had Hirschsprung’s disease*. He had surgery at 7 weeks, and was 18 weeks old at the time of the interview.

Background: Matt is 35 and a marketing manager. Donna is 34. They are married with two children.

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Matt and his wife were expecting their second child, they already had a daughter aged two. Donna’s pregnancy was unproblematic, and she was scheduled for a planned caesarean section at 39 weeks + 1 day at their local general hospital. Their son was born and seemed very healthy, but his parents and the doctors became increasingly concerned about his health over the next 48 hours. He did not pass any meconium (the important first baby poo) and started vomiting up his milk. The colour turned from white to yellow and then green. This green bile made midwives and doctors very worried and he was transferred to a larger specialist hospital for tests.

Matt and Donna had to face a week of uncertainty as doctors ran tests and x-rays. They were told that the condition could be Hirschpsrung’s disease* or possibly cystic fibrosis. To establish if it was Hirschsprung’s disease or not, doctors needed to take a small biopsy of his bowel and send it for tests. 

After a week of anxious waiting, Matt and Donna were told that their baby did indeed have Hirschsprung’s disease. They were relieved that it was not cystic fibrosis. During their time in hospital, they had been taught the various techniques they needed to know to look after their baby until he was a few weeks older and strong enough for the operation, so they were allowed to take him home. For the next 6 weeks they had to perform daily bowel wash outs, as he was not able to poo properly, and keep a very close eye for any signs of bowel infection.

Their baby was strong enough for his operation when he was 7 weeks old. Surgeons were unable to tell Matt and Donna until after the operation exactly how much bowel they were going to need to remove – it landed up being a long segment. But he recovered quickly and was home in a few days. At the time that Matt and Donna were interviewed, he had been home for 10 weeks and was doing well. 

* 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.

Matt and Donna’s son was still in hospital and had not passed any meconium. When he vomited green bile all over the floor the midwife called the surgeon to assess him.

Donna: And so we went over they put the tube in and he kept, she, she did him a tube feed and he actually kept it in and it was cos he was sort of vomiting after about half an hour previously whereas this time sort of an hour or so passed and he didn’t vomit. And then at about 10 ‘o’ clock had a wet nappy so I sort of laid him down and got all excited told the midwife ‘Oh we’ve had a wet nappy maybe the dirty nappy’s on its’s way’ and as I picked him up from changing his nappy he just, he threw everything up again so she spoke to the paediatricians again they said just leave it until his next feed and see how the next feed goes which was I think due at 1 ‘o’ clock in the morning. she came in to do his feed at 1:00 am and I was expressing, she said ‘You express I’ll feed him for you’ and as she was feeding him she said ‘It’s really odd it feels like he’s got a bit of wind so I’m gonna try and wind him’ she said ‘He shouldn’t cos he’s got a tube in.’ 

And so as she winded him, he threw up threw up on her and the floor and everything and she looked at it and she said, ‘I’m gonna go and get the doctors, take him to the doctors cos that’s not, its’s not ,milk that he’s throwing up so I just want the doctors to see him.’ and I remember she took him, took him with her and she seemed to be gone for ages and ages cos she said, ‘The doctors at the desk so I’m just gonna quickly run and get him’ and she come back and she said ‘He’s gone, I’ve rang him but he wants his he wants the consultant with him, he doesn’t, he doesn’t feel capable,’ I think is it the registrar then a consultant? He said ‘I don’t,’ you know, he the registrar wasn’t comfortable doing it on his own so we had to wait for the consultant to come in. by this time it was sort of getting on towards midnight I think, you were, you were.

Matt: About that, yeah.

Donna: Yeah at about 1 ‘o’ clock, well no, yeah, no, yeah it would be after 1:00 won’t it because his feed was at 1:00 so about 2 ‘o’ clock in the morning the consultant came and she showed him, she’d left everything on the floor all the sick and everything and he said sort of as soon as he saw the sick his face sort of looked slightly worried and he said ‘Is this, this what he’s been throwing up?’ I was like ‘Yeah, yeah’ and he said ‘Right we need to stop all feeds we’re gonna take him over to NICU, he’s gonna have to go on a drip, we need to do an x-ray to see if there’s a blockage and run a few tests and then we’ll know, we’ll know from there.’ So he got wheeled, wheeled out into, over to NICU which was sort of just across the way and sort of I got on the phone straight away to you didn’t I and said ‘He’s gone over I’ll let you know’ and he said ‘Well I’m coming back,’ so. 

Matt and Donna remember a barrage of question when they arrived at the specialist hospital, as doctors tried to make a diagnosis.

Donna: Yeah there was a lot of people around his bed, I just remember I was really struggling to keep my eyes open and everyone was asking us questions. We had one, one doctor was sort of asking, everyone had, several doctors asking me how my pregnancy was and whether there was any medical conditions, whether how our daughter, how healthy our daughter was whether cystic fibrosis was anyone in the family with it. And it, I don’t know it just seemed to be like questions being thrown at us for everything, well it felt like that to me. And then there was one doctor who said, you know, ‘You had an emergency C Section and was it because he was breached?’ I said, ‘No he wasn’t breached,’ and she was like ‘Right well he was breached, so was the section because he was breached?’ So I was like, ‘He wasn’t breached,’ I think she just left it at that thinking I was crazy and I thought she was crazy. But he yeah and he was breached, little tinker but he yeah everyone sort of there was a lot of medical team there trying to work out of he had an infection they were sort of asking a lot about taking lots of bloods off him and then they said that I just remember the one doctor saying that they needed to do a wash out on him.

Matt: Yeah

Donna: To get rid of his meconium because that’s what was making him poorly he was.

Matt: That’s the first time I, I got kind of a clarity speaking to, speaking to her she was kind of like, we suspect its’s this we’ve seen a lot of it recently she possibly said Hirschsprung*, I’ve no idea, that time of the morning no idea. and she just very much put my mind at ease as to we suspect it’s this, the likelihood is this, because these are the signs he’s showing for, cos he’s not passed it and obviously all the bile and stuff so yeah that was the first time we got that kind of clarity.

* 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.

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

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.

Matt and Donna said Facebook was a good resource for updating friends and family, and telling them more about their son’s rare condition.

Has it been quite hard talking to friends?

Matt: Only with, probably yes because we’re quite disconnected from them so most of our- we’ve got a couple of friends locally but one has moved away and the other has been very busy, although she has been helping around and been supportive and then our other group of friends are all my friends from [City] aren’t they really so they’re very disconnected I mean we sort of shoved a note on Facebook when all this carnage was happening a couple of days after he was born just to say it’s a bit, ‘It’s gone a bit wonky just we’ll be in touch thanks for all your lovely messages’ that kind of thing.

Donna: Yeah it was trying to stop the, cos we’d, we’d done that initial thing, you know I’ve got my baby and put it on Facebook and I was still getting the messages saying congratulations after we were sort of sat in HDU* and it was just like I just said I can’t, I can’t cope with getting them and people not knowing, I need to just put it put there that we’re going silent and, you know, just you know we just, we just thought we’re not going to respond to you I’m not being rude not responding to your messages but I just don’t want to deal with them I’m not opening, like we refused to open his cards. My dad kept bringing them up to the hospital if we got any in the post and I’d keep saying I’m not opening them until I get home until [son]’s home, you know.

Matt: But then by the flipside of that was Facebook was very useful because you basically just put up a link to Hirschsprung’s* didn’t you at one point pretty much give or take to explain to people so you don’t have to have that conversation time and time again.

Donna: Yeah you could just do it to everyone without having to repeat.

Matt: Truthfully with all of our friends he’s probably only seen…

Donna: Yeah he’s still not met everybody.

Matt: He’s still not met quite a few just with being busy and obviously a lot of it being weekends and stuff and their all busy.

Donna: We’d plan to do something and then he’d get ill or he’d have his surgery and just it’s difficult to explain to people because it’s what you read on the internet and I always sound really pessimistic with people asking me how he is cos I, you know, I feel as though I can’t say yeah he’s fine then I go yeah, yeah he’s had his operation that’s fine now isn’t it and its like well we won’t know until potty training age and then we don’t know it’s the unknown and people think unless they’ve been there don’t understand that unknown that it is, you know, it’s unknown.

Matt: Yeah.

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, 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 it’s gonna play out but if he’s not as normal as he can be with his bowel movements, you know.

* High Dependency Unit (HDU)
Babies in an HDU require slightly less monitoring and medical support than in an Intensive Care Unit (ICU). They may still need some help with breathing.

* 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.

Matt and Donna son developed Hirschsprung’s disease and was rushed to hospital in their nearest large city. They scrabbled to follow him with their young daughter, and appreciated having her around for distraction.

Donna: And everything stops in a hospital over a weekend, everything goes slow, well time just so slow wasn’t it, it was and we were, we were very lucky to get into the [Name] House at the hospital so we could have our daughter there. I, on the Thursday he was transferred I came home in the afternoon my brother picked me up and brought us home cos, brought me home, and I remember sort of running round the house I had my brother, my dad and my friend here and I was just packing bags cos I didn’t know what was happening, didn’t know how long we were going to be out the house for. So it was sort of just get everything that I could and my friend sort of into my friends Fiat 500 which, bless her, she was sort of, yeah she was brilliant she, she sort of I just said, ‘Can you take us back to the hospital,’ we didn’t have a car seat we borrowed a car seat from the neighbour across the road that would fit into her car and literarily just filled it up with as much stuff, I just kept sort of throwing stuff down the stairs to come into bags and.

So you were packing to take your daughter as well at that point?

Donna: Yeah, yeah. We had no one that could have her.

So you were all going to the [Name] house?

Donna: Yeah. Yeah.

Okay. So how far away is the hospital from here?

Donna: Its’s about 15, 15 miles but it’s a nightmare to get to, in traffic the, the traffic coming out of here is horrendous.

Matt: Without the traffic it’s 35/40 minutes.

Donna: Yeah.

Matt: Thankfully we were doing at stupid times in the morning. Every time I’ve been it was stupid ‘o’ clock.

Donna: Yeah, so we packed, we packed her up and sort of everything that I could for us, and Matt stayed at the hospital with [Son] overnight because I couldn’t get up and down off the bed and I stayed with my little girl cos she’s-

Matt: A pain.

And it sounds like having the [Name House] there, is a real God send.

Donna: Yeah, yeah a blessing yeah.

Matt: That was also, I the, I mean even yeah the accommodation lady, she was amazing, wasn’t she.

Donna: Yeah the hospital family liaison.

Matt: It was very much our hour of need that Fri-that late Friday cos he got in late and stuff.

Donna: Yeah.

Matt: It was very much causing real panic.

Donna: Cos I was, we sort of said if we didn’t get into [Name House] on his operation day we’d, I said ‘Right I’m just gonna book the Travel Lodge across the road cos I’m not going home and I want [daughter],’ we didn’t have anyone really to have [daughter] overnight did we?

Matt: No not particularly.

Donna: And so I sort of said right well ‘I’ll be across the road in the Travel Lodge if I have to.’ and that’s sort of why we went down to the sort of family liaison department and said is there anything cos they were being, the nurse we spoke to initially didn’t put our referral through and there was all a bit of hooing and haaring as to whose referrals as to whether it was HDU or the surgical ward that he was admitted to first off sort of the where he’d gone down to theatre from. And so we were sort of like we’ve not got a clue what’s going on and so we went down to see them and she, that’s when she sorted us out the bed because she said I know [Name House] full at the minute. But they were, they were good and it was nice to have [daughter] there as a bit of distraction, bit of normality. Although, for her, she’s, she had the time of her life cos she got spoilt rotten.

Matt: She did.

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: 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.

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

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

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

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