Vanessa

Age at interview: 31

Age at diagnosis: 30

Brief Outline: Vanessa’s second son was born 9 days early. He seemed fine at first, but developed digestion problems, diagnosed as Hirschsprung’s disease*. He had surgery when he was 10 weeks old. He was 16 months old at the time of interview, and thriving.

Background: Vanessa is a bank complaints manager. She is married with two sons.

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Vanessa was expecting her second son. The pregnancy was normal and her son was born 9 days early and seemed very well at first. She and the baby were allowed home the same day, as their hospital was close by and there were no initial concerns. However during the first night, Vanessa became increasingly concerned about her new baby. He had not had his first poo, was not feeding well and vomiting a lot. During the first day the vomit turned progressively more yellow and then green. 

They were due to go back to hospital the next day for an injection, so Vanessa asked midwives to have a look at him. Staff found that he had a blockage in his bowels. This was cleared but doctors wanted to find out what caused it, and so ran a lot of tests. The results took a week to come back, during which time her son was kept in hospital, being given regular bowel wash-outs. Vanessa learned how to do these too. He appeared well, so Vanessa was shocked when surgeons informed her that the biopsy tests showed that he had Hirschsprung’s disease* and would need surgery. 

Vanessa was allowed to take her son home, and gave him wash-outs twice a day until he was 10 weeks old and big and strong enough for surgery. During this time, Vanessa and her husband were supported by a specialist surgical nurse, who was on hand to answer any questions or worries. Their son went back into hospital for surgery – they were expecting the operation to last 6 hours, but it actually took a lot longer. Surgeons had to remove about half of his colon - the section affected by the disease and not working properly. Vanessa stayed in hospital with him for 6 days after the operation and then he was allowed home. One year on, he was doing brilliantly.

* 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.

Vanessa really appreciated the support she was given to continue breastfeeding her son when he went in for his operation.

Yeah when he was having his operation I did cos I was keen to make sure I could continue to, to feed him because he had been such a good feeder and I breastfed my other little boy as well like I said and they had sort of when we was in the neo-natal, she did say ‘Are you breastfeeding’ and I said ‘Yeah I’m trying’ like and she said ‘Yeah that’s good it’s preferable if you can because it’s easier for them to digest with potential bowel problems.’ I mean I would have anyway but that sort of just reinforced it like yeah we want this to work and that was like one of the good things when I had to stay in with him because I went back on the neo-natal ward after like a couple of days they were a bit like, you know, how long are you staying sort of thing because obviously I didn’t have him with me usually the baby’s in the neo-natal ward the mum and dad don’t get to stay. 

Yeah, yeah.

But they were really good they there’s a ward that they weren’t using anymore that they’d closed and they re-opened it for me and two other mums and so that we could stay there because they, I don’t think they had room for us in there in the neo- in the post-natal ward. So they opened this up and we, we could stay there and the babies were still in the neo-natal ward. But it was just so that I could breastfeed him basically because they were wanting, we want him to be breastfed and with the other mums it was because their babies were premature and they were just getting to the stage where they could try and breastfeed them so again they were like we’ll do this. Yeah I did feedback to then that I thought that as really good that they did that.

Vanessa felt she was given enough information, but not too much. She appreciated that they couldn’t answer all her questions immediately.

And did you feel like that kind of the information that they gave you at that meeting on the Tuesday, did it answer all the questions that you had then I mean surely they couldn’t answer all your questions but.

To an extent, yeah I mean it was hard because obviously I was quite emotional about it but the surgeon who actually did his operation in the end he was the one who come and told us he like drew a diagram to explain what Hirschsprungs* was obviously I’d never heard of it and like I say I was always thinking they’re gonna come back and say yeah he’s fine there’s nothing wrong with him. and yeah the other nurses who had been doing his wash-outs they were there and it was another surgical nurse who was there who you kind of got to know anyway but yeah they gave us this information sheet straight away to tell us what it was and they gave us like a medical alert cards so that look out for like the warning signs of him having infection. Yeah they weren’t, you know, they gave us enough information but not too much because I think they obviously realised that, you know, it’s early days but they had to highlight the seriousness of it and that, know if anything if he was showing any signs of anything you’re to bring him back basically.

More or less yeah, I mean the thing we’re finding with Hirschsprungs is they’re not, they can’t really give a straight answer because there’s a lot of unknowns about it so yeah we did have questions and, you know, they answered them the best they could and to be fair they, you know, he was quite realistic with us he said, you know, what we’ll do is test his portions of his bowel while we’re doing it and see how much is affected to see how much needs to be removed but it may or may not be, not successful, he said we will remove it regardless but he said different outcomes, you know, it could, he could still have problems going he just said that we just don’t know until, so yeah it wasn’t, it certainly isn’t like yeah we’re having this operation and he’s going to be fine after that, it was like yeah he’s having this which needs to be done because that bit of his bowel doesn’t work so it has to be taken out and but we can’t really tell you, you know, how he’s going to be afterwards. So there was that, but you know we just accept that, we still do now like he’s alright at the moment but we know that he could, I don’t know, different things could affect him as he grows and just, you know.

* 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.