Latest / Tom's Hirschsprung's Podcast / Episode 76 - With Georgina Merckel (Part 2)

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Episode 76 - With Georgina Merckel (Part 2) · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode seventy six of Tom's Hirshprung's Podcast. I am delighted
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Speaker 1: to welcome back and Georgina Merkell.
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Speaker 2: Georgina, welcome, Hello, thanks for having me back.
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Speaker 1: Now, you're very welcome. We've got lots of stuff to
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Speaker 1: talk about, lots and lots of stuff. You've been very,
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Speaker 1: very busy, as many people may know already, and we
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Speaker 1: will we will talk about your busy venture in a bit.
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Speaker 1: But we've got a few topics that are going to cover,
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Speaker 1: mainly just little bits around Hirshprung's stats, some current research.
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Speaker 1: We are going to talk about the website that you
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Speaker 1: have launched, which is fantastic by the way, absolutely love it.
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Speaker 1: And then we'll give a little update on your son
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Speaker 1: Freddy a little bit later on. So if we kind
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Speaker 1: of go from the top, there is a lot of
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Speaker 1: Hirshbrung's stats, Albert, very very difficult, I would imagine two
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Speaker 1: to sort of accurately grab all of those stats. But
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Speaker 1: I know you've been doing an awful lot of research.
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Speaker 1: What kind of things have you come across?
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Speaker 2: Do you know what it's? It's You're right, there is
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Speaker 2: so much there, but there's relatively limited studies and there's
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Speaker 2: I ended up down a rabbit hole of some really
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Speaker 2: technical studies about it's surgery, and I actually read a
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Speaker 2: lot of it and didn't understand any of it because like, right,
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Speaker 2: I'll go back to the ones I understand because they're
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Speaker 2: complex to read, and you know, night Phone's got the
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Speaker 2: time to sit there and sort of read it and
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Speaker 2: digest it, really understand it. So I thought it was
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Speaker 2: a great idea if we if we had a chat
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Speaker 2: about it, because there is quite a bit out there,
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Speaker 2: and I think we sort of have these key stats
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Speaker 2: that get thrown around with like how many people are
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Speaker 2: diagnosed a year in the UK specifically, and then what
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Speaker 2: the the ratio is that we see all the time,
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Speaker 2: which is one in five thousand, and I guess amongst
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Speaker 2: the Hirschbums community we talk about that because we've got
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Speaker 2: our sort of the family focused UK Facebook group where
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Speaker 2: we're seeing people join because they think they're their child
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Speaker 2: or they might have hush Hirshbrong's disease and they're talking
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Speaker 2: about it and then late diagnosis and when you're in
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Speaker 2: something you see loads of it, so sometimes it's it
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Speaker 2: can be hard to sort of see to the stats.
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Speaker 2: And more research is happening now, which is helpful, but
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Speaker 2: I've picked out three or four key studies which are
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Speaker 2: focused on UK based because if you end up falling
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Speaker 2: into global research, you can fall off a bit of
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Speaker 2: a cliff in terms of looking and look looking at Japan,
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Speaker 2: where there's quite a bit of research in the US
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Speaker 2: as well, but I've sort of stayed in the UK
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Speaker 2: and Ireland really. But the first one I wanted to
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Speaker 2: look at was is a study called Hirshbrongs Disease in
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Speaker 2: the UK and Ireland Incidents and Anomalies, And it's twenty seventeen,
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Speaker 2: so you know, fairly recently, but it looked at infants
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Speaker 2: born between two thousand ten in twenty twelve, so like
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Speaker 2: it's just under two year period that they're looking at,
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Speaker 2: and there were three hundred and five children presenting before
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Speaker 2: six months with Hirshbrongs disease and the research was carried
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Speaker 2: out across the twenty eight Pediatric surgical centers in the
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Speaker 2: UK and Ireland, so on the whole children with hirschbrongs
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Speaker 2: are referred to one of those that where they're treated,
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Speaker 2: and just some of the stats from that they're quite interesting.
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Speaker 2: So the ratio with this was actually one in five thousand,
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Speaker 2: five hundred rather than one in five thousand, So that
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Speaker 2: interested me a little bit because we hear the one
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Speaker 2: that one in five thousand, but it's actually one point
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Speaker 2: eight and ten thousand, so slightly less than you know,
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Speaker 2: what we hear the male to female ratio was what
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Speaker 2: is what we know out there, which is that boys
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Speaker 2: are three times more likely to be affected than girls,
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Speaker 2: which is interesting. But what I found really interesting was
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Speaker 2: one of the key diagnosis clues. I guess that someone's
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Speaker 2: got Hirshbruns diseases not passing mconium within forty eight hours.
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Speaker 2: That's the big glaring sign that's in all your maternity notes,
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Speaker 2: and it's in that piece of paper and you get
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Speaker 2: discharged and it says if your child meets any of
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Speaker 2: these criteria, But only forty eight percent of those children
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Speaker 2: who were diagnosed, forty percent actually past myconium, so only
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Speaker 2: fifty two didn't. So actually is it is it a
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Speaker 2: diagnostic clue when any covers half of those children, it's
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Speaker 2: a really interesting one.
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Speaker 1: Yeah, it's partially, isn't it, Because I was one of
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Speaker 1: those that percent where I did pass mconia, but I
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Speaker 1: still have Hirshbrugs diagnosed after two and a half weeks.
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Speaker 1: So usually I know you said forty eight hours, but
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Speaker 1: I've again doing as many episodes as I have all
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Speaker 1: day every day, I have come across so many different ways,
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Speaker 1: different stages of diagnosis. Yeah, and it's not it's not
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Speaker 1: always that standard. Didn't pass myconium forty eight hours bang hirsprungs.
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Speaker 2: And that's what I think. I think like often those
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Speaker 2: district hospitals, those local hospitals, they're looking out for some
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Speaker 2: key criteria, and that is usually past not passing the
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Speaker 2: codium within forty eight hours. It's distended tummy, and it's
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Speaker 2: signs that the child is in well right, vomiting green,
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Speaker 2: something like that. But if those key diagnostic clues don't
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Speaker 2: cover the whole proportion of children who've got Hirschbrungs and
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Speaker 2: get that diagnosis within six months, not even thinking about
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Speaker 2: those that get that later diagnosis, it's not actually clear
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Speaker 2: cut diagnostic criteria is it? So, I think it's I
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Speaker 2: think it just stood out to me as something that
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Speaker 2: is a really interesting element that I think could be
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Speaker 2: discussed in terms of NHS protocol in the UK about
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Speaker 2: what they're looking for at point in those first couple
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Speaker 2: of hours of birth. And I would be interested to
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Speaker 2: see at what point that maconium there's for those forty
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Speaker 2: eight percent of people who pass maconium. At what point
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Speaker 2: was that within that forty hour window? Was it one hour,
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Speaker 2: ten hours? Is it there? You know? Is it thirty
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Speaker 2: six hours? Is it twelve hours? Like? Could that window
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Speaker 2: be amended.
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Speaker 1: And look at that potentially? I mean it's it's interesting
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Speaker 1: it was forty eight hours is a long time, you know,
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Speaker 1: is it like said, is it one hour or is
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Speaker 1: it forty seven and a half, Because that's a world
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Speaker 1: of difference.
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Speaker 2: Potentially it is a long time. And also they're looking
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Speaker 2: for other signs like this tended to me signs that
8:12
Speaker 2: clinical illness. You know, Freddie didn't have those. He was
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Speaker 2: fifty six hours old before we were transferred to all
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Speaker 2: the hay And I think it's interesting that that those
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Speaker 2: that's that you know criteria. So I think that maybe
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Speaker 2: the early signs can be missed, and that maybe the
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Speaker 2: the criteria could be adapted to open up a wider window,
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Speaker 2: and district hospitals could be educated about looking out for
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Speaker 2: those signs because we know that hirshbums is rare, and
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Speaker 2: we know that they're not always looking for the rare
8:45
Speaker 2: things because they're rare, right, But it's a great window
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Speaker 2: to pick that up because sending a child home for
8:52
Speaker 2: parents who are often sleep deprived in that new area.
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Speaker 2: And I mean I am talking to all by friends.
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Speaker 2: They all go home and go is this normal? What's
9:02
Speaker 2: this is the And it can feel a bit lonely
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Speaker 2: that bit, but you know when you're in the safety
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Speaker 2: of a hospital and that's what their clues they're looking for.
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Speaker 2: I think it's interesting then that maybe primary care such
9:14
Speaker 2: as things like midwives and GP surgeries, and then we're
9:17
Speaker 2: looking at diagnostic hospital, the district hospitals where that diagnosis
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Speaker 2: is picked up and then referred into the pediatric surgical
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Speaker 2: center for support. Maybe there's a bit of movement there
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Speaker 2: in terms of what that looks like in the future.
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Speaker 2: But I was interested as well. Eighty six percent of
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Speaker 2: those children diagnosed received a rector wash out as the
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Speaker 2: first treatment step from most people I talk to, that's
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Speaker 2: kind of first step now when they've got those signs.
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Speaker 2: And we were looking at twenty seven percent of people
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Speaker 2: for those children, maybe's washouts failed and they had a stoma.
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Speaker 2: I think in the end thirty six percent of those
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Speaker 2: infants ended up having a stone. So there's also a
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Speaker 2: gap of people who get the stimulator, just like Freddie,
10:03
Speaker 2: who are getting that stimulator, but a good proportion getting
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Speaker 2: them early in those first weeks when they get their diagnosis.
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Speaker 2: But then there's also a lot of people going home
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Speaker 2: doing wash out rectel washouts. And it's not something you
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Speaker 2: hear about people doing at home. It's a big responsibility.
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Speaker 1: I think, yeah, yeah, you're right, it is. And again
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Speaker 1: I speak to speak to so many parents who've had
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Speaker 1: to do the washouts when they go home, and it
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Speaker 1: is a huge task, you know, and it is it's
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Speaker 1: something that you know, maybe you know a week ago
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Speaker 1: you weren't necessarily prepared for, and then suddenly you have
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Speaker 1: to do you know, your whole world is then turned
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Speaker 1: completely upside down.
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Speaker 2: I guess, yeah, yeah, So I had another look at
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Speaker 2: another another study twenty finety one which looked to outcomes
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Speaker 2: for five to eight years age for children with Hirshbungs disease,
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Speaker 2: which is interesting because it's hard for parents to make
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Speaker 2: decisions in those early days and weeks and a diagnosis
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Speaker 2: when they don't have sort of any understanding of what
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Speaker 2: life's going to look like. And I think that's a
11:18
Speaker 2: big scary thing. And so I think it's great that
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Speaker 2: we have some information about what outcomes look like. But
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Speaker 2: then that I'm only going to talk about this. More
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Speaker 2: research being done into this, which I think will be
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Speaker 2: helpful in the later years when we've got some idea
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Speaker 2: of what a typical experience looks like, if there is
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Speaker 2: such one, because as we know, every child with hirshbunks
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Speaker 2: often has a different treatment plan, a different experience. In like,
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Speaker 2: there are some shared experiences, but everybody speak to they've
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Speaker 2: got this whole range of experience and stories, really, haven't they.
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Speaker 1: Yeah, I mean it's kind of lucky we did otherwise
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Speaker 1: be out of a podcast if every episode was the same.
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Speaker 2: I love that. And do you know what's more interesting?
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Speaker 2: As I just I'm a bit of a stat s geek.
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Speaker 2: I love this, But the same key people show up
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Speaker 2: in the in the authors of the studies that you're
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Speaker 2: looking at, which is good, and that shows that the
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Speaker 2: key people costs sort of the pediatric surgical sphere, who
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Speaker 2: are invested in research, and that we're seeing that because
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Speaker 2: you know, I mean, rare things I guess are interesting,
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Speaker 2: but there are rare things in Hirschbung's disease, so you know,
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Speaker 2: I think, yeah, interesting. But this study looked at various
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Speaker 2: different things, so unfortunately, looked at mortality, so death rates.
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Speaker 2: It also looked at bowel and bladder function, which I
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Speaker 2: think is the interesting one for a lot of people
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Speaker 2: whether short segment, long segment or total chronic hirshbrongs had.
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Speaker 2: We could see a difference essentially in the stats there.
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Speaker 2: And then they also looked at hand people required a reoperation,
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Speaker 2: and then finally they looked at quality of life. So
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Speaker 2: we can see these key different areas that hopefully over
13:15
Speaker 2: time we all see, you know, maybe some trends going
13:20
Speaker 2: through what we're looking at. But I think it's it's
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Speaker 2: helpful to know that ninety five percent of children survived,
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Speaker 2: which is good. That sort of the rate of mortality
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Speaker 2: with hirshbringsias is very very low now and that's because
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Speaker 2: we have extensive pediatric surgical centers with incredible ICUs and
13:47
Speaker 2: you know, hopefully not in the same situation as you
13:50
Speaker 2: were Tom in terms of not knowing and you know
13:54
Speaker 2: your life will saved by one person.
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Speaker 1: You know. Yeah, yeah, I mean we're going back thirty yeah,
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Speaker 1: thirty three years now. But that that piece of research
14:06
Speaker 1: was new research at the time, which was the shot
14:10
Speaker 1: of magnesium. If you've got tachycardia where the heart rate
14:14
Speaker 1: starts to starts to climb over. I think one hundred
14:17
Speaker 1: bitts a minute shot of magnesium slows the heart rate down.
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Speaker 1: But I guess things like that that we are now
14:25
Speaker 1: we know a lot more help. I guess that that
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Speaker 1: mortality rate.
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Speaker 2: Yeah, yeah, definitely. So when we're looking at bowel and
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Speaker 2: bladder function, which is which is one of the things
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Speaker 2: people think about stoma or no stoma. So a large
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Speaker 2: percentage of children didn't have a stone r in that
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Speaker 2: was age five to eight years, so it was eighty
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Speaker 2: ten percent no stoma, thirteen percent with a stoma, but
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Speaker 2: only five percent of those stonmas were intending to be
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Speaker 2: permanent at the time the study was done, So it's
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Speaker 2: a small percentage of people who go on to have
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Speaker 2: a permanent sotma, and some of those are temporary due
15:02
Speaker 2: to be reversed. But in terms of incontinent fecal in continents,
15:07
Speaker 2: so that is a sixty forty split, well fifty seven
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Speaker 2: forty three split with yes. So a large reportion of
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Speaker 2: those children h five to eight are still experiencing difficulty
15:21
Speaker 2: going to the toilet. And that's a really interesting point
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Speaker 2: to wonder about whether when we are understanding what impact
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Speaker 2: harshprint is going to have in those early years when
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Speaker 2: we talk about pull through surgery, that parents are informed
15:36
Speaker 2: that that is on the whole fairly common, that there
15:39
Speaker 2: are going to be difficulties, and whether that's something that
15:44
Speaker 2: we parents are informed about on a regular basis so
15:47
Speaker 2: they can understand because I know some people are spoken
15:50
Speaker 2: to get the whole it's pull through and done sort
15:53
Speaker 2: of cure in invertig commers and that's common thing people here,
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Speaker 2: and maybe that's Is it helpful to know that in advance,
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Speaker 2: that that's what you may experience that's normal? Is it?
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Speaker 2: Does it normalize it if we know that's the case,
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Speaker 2: or does it scare people? It's a tricky one.
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Speaker 1: I guess yeah. I think I guess from my point
16:17
Speaker 1: of view and the people I've managed to talk to.
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Speaker 1: A lot of people I talk to are in your
16:23
Speaker 1: situation where they have a child who's one or under
16:26
Speaker 1: and we talk about the pall through and we talk about,
16:29
Speaker 1: you know, the diagnosis and whatnot. I haven't interviewed very
16:33
Speaker 1: many parents who have five to eight year olds, and
16:36
Speaker 1: I have just done an episode with Tash who has
16:42
Speaker 1: children around that age, and I think it's one of
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Speaker 1: very few episodes I have done with children sort of
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Speaker 1: maybe between sort of five to ten. A lot of
16:53
Speaker 1: people are either adults like me or have much younger children.
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Speaker 1: So I guess it's it's really difficult to sort of
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Speaker 1: give a a view on that because I wouldn't know.
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Speaker 1: I wouldn't know as much.
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Speaker 2: Yeah, I think it's interesting, isn't it.
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Speaker 1: I think.
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Speaker 2: It's just something. It's just things to think about and
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Speaker 2: to like when we're reflecting on the experience of for
17:18
Speaker 2: parents of children with Hirshbung disease, knowing whether this information
17:24
Speaker 2: is helpful to know and informative. Everyone's different. I mean,
17:27
Speaker 2: I love of info, so it helps me. Yeah, but yeah,
17:31
Speaker 2: it's nice. I think what's helpful I think on the whole.
17:35
Speaker 2: Most people tell me is it's helpful to know you're
17:38
Speaker 2: not alone. I think that's the key. So maybe this
17:43
Speaker 2: information is helpful when we move on to Hirshbung's associated
17:47
Speaker 2: eNTRI clitis, looking at those stats, it's actually a real
17:51
Speaker 2: fifty to fifty split on those children who'd experienced what
17:56
Speaker 2: at least one episode of entroclitis since diagnosis, really fifty
18:00
Speaker 2: fifty to fifty. So that's another thing that's interesting as well,
18:03
Speaker 2: because going home with that diagnosis of either whether you
18:06
Speaker 2: get it early or late, you're worry about entercolitis and
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Speaker 2: what the likelihood of that is, and you know, there
18:13
Speaker 2: isn't a lot of clear info on that, is there.
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Speaker 1: So but it's another word that again because I know
18:20
Speaker 1: we talked about this a little bit, because we're in
18:22
Speaker 1: that bubble of her, that Hirshprung's bubble where we either
18:26
Speaker 1: research all the time, we talk to people, we've got
18:27
Speaker 1: it all the time. We hear that word so often
18:30
Speaker 1: that we kind of you maybe think that is associated
18:33
Speaker 1: with Hirschbrun. So it's interesting to know that it is
18:36
Speaker 1: half and half.
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Speaker 2: Yeah, really fifty fifty, And then maybe that's a settling
18:40
Speaker 2: thought that it's not ninety or eighty percent. You know,
18:44
Speaker 2: it's a fifty to fifty It's possible, you know, not likely,
18:50
Speaker 2: but possible. So that changes your outlook on the way
18:54
Speaker 2: you look at children's experiences when they come home as well,
18:58
Speaker 2: because parents are looking out for those signs. If you
19:00
Speaker 2: know it's a fifty to fifty chance, you know, I
19:03
Speaker 2: don't know if that's more setting or on setting.
19:05
Speaker 1: I don't know.
19:06
Speaker 2: I don't know. And then finally they did look at
19:11
Speaker 2: people who required assistance to maintain voluntary bower movements, which
19:16
Speaker 2: is whether you needed laxatives, enemas, and irrigation, so the
19:21
Speaker 2: washouts and then different there are different types of enemas irrigations,
19:26
Speaker 2: so looking at those. So fifty percent of those children
19:29
Speaker 2: required no assistance, so again that's an interesting one, whereas
19:34
Speaker 2: fifty percent did require some support, and the majority of
19:36
Speaker 2: that is laxatives, which many children with hairshbrong disease go
19:40
Speaker 2: on for a period time at least as well as
19:43
Speaker 2: children who don't have hairshbrogs disease tay laxatives as well.
19:45
Speaker 2: It's a it's a and you have to remember this
19:48
Speaker 2: this study is on I think this is two hundred
19:51
Speaker 2: and twenty seven children, So it's not a huge proportion
19:54
Speaker 2: of children to look at, but it's helpful to look
19:57
Speaker 2: at across section of people.
20:01
Speaker 1: Yeah, I'd say it is a large amount of Hirshprungs children.
20:06
Speaker 1: And I wouldn't say, you know, if you were to
20:08
Speaker 1: do a study on two hundred and twenty seven footballers,
20:11
Speaker 1: that's not a lot, but two hundred and twenty seven
20:14
Speaker 1: Hirshprungs people. To me, that sounds that sounds like quite
20:18
Speaker 1: a lot of people to find.
20:21
Speaker 2: Yes, And I guess the point of this was following
20:23
Speaker 2: them through from birth. Then the five to eight is
20:27
Speaker 2: where they looked at this information. And interestingly, when looking
20:32
Speaker 2: at short segment or long segment or total chlonic, so
20:35
Speaker 2: that was two categories they split into. They put long
20:37
Speaker 2: segment and total chlonic in the same category, and then
20:40
Speaker 2: short segment was its own category. It doesn't look like
20:44
Speaker 2: across I mean, there's bits and pieces, but across the
20:48
Speaker 2: whole the stats tend to be the same, so doesn't
20:51
Speaker 2: seem just to matter. I guess whether the length effective
20:56
Speaker 2: bout is short all long segment of total chronic the
21:00
Speaker 2: outcomes appear to be pretty similar, so stone is slightly
21:03
Speaker 2: more likely, entrogliitis is slightly more likely with the long
21:06
Speaker 2: segment of total chlonic but interestingly, yeah, fairly fairly similar.
21:14
Speaker 2: Which is interesting, isn't it Because in those early days
21:17
Speaker 2: of pull through and taking out the entire large, large
21:20
Speaker 2: intestine versus that short piece, or does we'll be really
21:24
Speaker 2: looking at when that matters in terms of long term outcomes.
21:28
Speaker 2: That's an interesting one. I think we need more information
21:30
Speaker 2: on as research continues, because I think that's interesting to know.
21:33
Speaker 1: Yeah, I think so. I think so because I think
21:37
Speaker 1: the general line of thought may well be or if
21:41
Speaker 1: you have more affected, you're going to have greater issues potentially.
21:47
Speaker 1: But that's really interesting that there isn't too much difference
21:50
Speaker 1: in terms of stats.
21:53
Speaker 2: And before we sort of move on to quality of life,
21:56
Speaker 2: the last thing that they looked at in terms of
22:00
Speaker 2: tactical medical element was looking at unplanned operation reoperations after
22:07
Speaker 2: pull through, So how many people required another surgery and
22:14
Speaker 2: then around seventeen percent had one, eight percent had two,
22:18
Speaker 2: five percent had three, but fourteen percent had four or more.
22:25
Speaker 1: Interesting it's interesting, yeah, because I guess again, surgeries just
22:32
Speaker 1: in general are a tricky one because again, just going
22:36
Speaker 1: off the people I meet, there are people who have
22:39
Speaker 1: the pull through and then fine and everything's great, and
22:42
Speaker 1: there are people who've had one hundred plus surgeries, so
22:46
Speaker 1: it is Yeah, that's that's an interesting one.
22:49
Speaker 2: It is. And then just touching on quality of life,
22:53
Speaker 2: which they looked at understandably, I think those who had
22:58
Speaker 2: difficulty going to the toilet so in continents, they had
23:04
Speaker 2: a lower quality of life than those who didn't, which
23:06
Speaker 2: I think is an understandable measure. There isn't it. But
23:10
Speaker 2: it's interesting that that was looked at because I think
23:12
Speaker 2: that's an important element that we might not look at
23:15
Speaker 2: when we look at stats. We're looking at the medical
23:17
Speaker 2: side of things, but we're looking at people's experiences as well.
23:20
Speaker 1: Yeah, I think that's interesting. That's a really interesting thing
23:23
Speaker 1: that you can't necessarily put a number on, but it is.
23:27
Speaker 1: It is a really really important point as well. I
23:29
Speaker 1: know you said that kind of stands to reason, there's
23:32
Speaker 1: common sense to a certain extent, but yeah, interesting the
23:36
Speaker 1: study focused on that as well.
23:37
Speaker 2: Yeah, And I mean I won't touch too much on
23:41
Speaker 2: the other two studies that I looked at, but one
23:43
Speaker 2: was about the management of Hirshbrog's disease in the UK
23:45
Speaker 2: and Ireland, So how it's changed over the years, and
23:48
Speaker 2: it's changed hugely, Tom, I mean, like, look at the
23:51
Speaker 2: surgeries that you've had versus that the children now are
23:55
Speaker 2: having very different, very different and that's through I guess,
24:00
Speaker 2: surgical familiarity and surgeons doing similar surgery over and over
24:06
Speaker 2: again because they get more competent and people are training
24:09
Speaker 2: and looking at this. So I think that's interesting. But
24:11
Speaker 2: one thing that stood out to me in this study,
24:15
Speaker 2: which was don in twenty ten, said that across the
24:19
Speaker 2: twenty six pediatric surgical centers, sixty five percent of those
24:22
Speaker 2: had a named lead surgeon for Hirshbrong's disease, which meant
24:26
Speaker 2: more coordinated care. I thought that was interesting.
24:30
Speaker 1: Yeah, well that helps most certainly helps. I mean, I
24:34
Speaker 1: know that we've both been to hospitals that are very
24:40
Speaker 1: much specialists in Great Woman's Street and Older Hay, and
24:45
Speaker 1: they're very much sort of world renowned when it comes
24:47
Speaker 1: to Hirshbrung's care. I mean the amount of people spoken
24:51
Speaker 1: to who've who've been to either one of those. But yeah,
24:55
Speaker 1: much very interesting to know that the coordinated Yeah, because
25:00
Speaker 1: again I find that something is I mean, you must
25:04
Speaker 1: know this more as a parent that you don't then
25:06
Speaker 1: have to explain things a hundred times over and over
25:09
Speaker 1: again to a new consultant, to a new nurse, to
25:12
Speaker 1: a new you know, that must really help.
25:14
Speaker 2: Yeah, And I think that's interesting because almost all the
25:17
Speaker 2: parents I speak to feel like care could be better coordinated,
25:23
Speaker 2: and they've had sometimes not a great experience with explaining
25:31
Speaker 2: what's going, you know, going through the history maybe waiting
25:35
Speaker 2: lists for care, which I think we see across the
25:37
Speaker 2: NHS for all areas. But interestingly, that's something that comes
25:42
Speaker 2: up for a lot of the families I talk to,
25:45
Speaker 2: and from what I can tell is so many people
25:47
Speaker 2: have had such a different experience, even at the same
25:49
Speaker 2: hospital and the same surgeon. I think, and that's that
25:52
Speaker 2: could be a be a part and parcel of what
25:55
Speaker 2: we know about the strain on the NHS. But interestingly,
25:58
Speaker 2: I think that's just it might in twenty ten they
26:02
Speaker 2: were looking at more coordinated care. I think in twenty
26:05
Speaker 2: twenty five we can say that potentially should be more coordinated.
26:11
Speaker 2: Maybe that's not fizzled down into parent experience yet. Maybe
26:17
Speaker 2: there's more to do. Maybe, Yeah, I thought that was
26:20
Speaker 2: an interesting one. But we do know that that there
26:24
Speaker 2: is a trend towards more modern, minimally invasive surgeries where possible,
26:28
Speaker 2: So keyhole surgery is where we're moving forward to, which
26:34
Speaker 2: I think is interesting. Isn't it that you know trends
26:36
Speaker 2: across surgery in general, but a set attempting to see
26:41
Speaker 2: sort of greater consistency and how children are treated. The
26:46
Speaker 2: final one I looked at was more overview of what
26:52
Speaker 2: they would what do we define as a success if
26:55
Speaker 2: treatment for a child with surgical condition and anyone who
27:01
Speaker 2: doesn't know if their child's had a surgery in the
27:03
Speaker 2: first couple of years, they may be able to take
27:06
Speaker 2: part in some research and joining a sort of register
27:10
Speaker 2: which is called SEESAW. It's cso R, it's a database,
27:15
Speaker 2: and the idea is is a Children's Surgery Outcome Reporting
27:19
Speaker 2: Program five years and the aim is to look at
27:24
Speaker 2: whether it's possible to reduce the variation of health and
27:27
Speaker 2: wellbeing for children who have early surgery. So it's interesting
27:33
Speaker 2: if your child has had surgery in those early years
27:36
Speaker 2: and they need to have one of six conditions heshbun
27:42
Speaker 2: disease being one of those, but you can join the
27:45
Speaker 2: database and you can feedback different things about outcomes wellbeing.
27:51
Speaker 2: But the research out of that will be interesting. But
27:54
Speaker 2: they were looking at They're looking at things like quality
27:58
Speaker 2: of life again important ration of survival number and type
28:02
Speaker 2: of operations, and then hospital related infections or hospital treated
28:06
Speaker 2: infections relating to that condition. So I think these are
28:09
Speaker 2: elements where there is a a There is some research
28:15
Speaker 2: on that already, but it'll be interesting to see what
28:17
Speaker 2: happens when that sort of five years is up and
28:20
Speaker 2: we see we see that I think there's more emphasis
28:26
Speaker 2: on quality of life.
28:30
Speaker 1: I think that that's such an important point. I think
28:34
Speaker 1: that again I go back to speaking to so many
28:39
Speaker 1: people through this, and the main question asked in so
28:44
Speaker 1: many different ways is kind of like, will my child
28:47
Speaker 1: be okay? What's going to happen in the future? You know, what,
28:50
Speaker 1: are they going to be all right when they're four
28:53
Speaker 1: and they're going to school, five eight, you know, when
28:57
Speaker 1: they're twelve, when they're going into secondary education. And of
29:00
Speaker 1: course we can't answer that straight away, but it is
29:06
Speaker 1: that that burning question, is my child going to be fine?
29:09
Speaker 1: And no, will never have a definitive answer to that, Yeah,
29:14
Speaker 1: but the closer we can get to that the better,
29:19
Speaker 1: and I think we can get closer in terms of
29:23
Speaker 1: doing these quality of life studies to not give a
29:27
Speaker 1: definitive answer, but to say, okay, well we did this
29:30
Speaker 1: study and this happened, and we did this study and
29:34
Speaker 1: you know, if we did this type of exercise or
29:38
Speaker 1: whatever it might be, then this happened. And I think
29:42
Speaker 1: that that's probably amongst some of the most important research.
29:49
Speaker 1: I think out of everything we've said so far.
29:52
Speaker 2: Yeah, I think so true. I think it's going to
29:54
Speaker 2: be interesting over the next few years, the next decade
29:57
Speaker 2: two decades, as research is becoming part and parcel of
30:01
Speaker 2: hirshbrung's treatment. As far in our experience anyway, that may
30:05
Speaker 2: not be the case elsewhere across the UK, but hopefully
30:11
Speaker 2: we will have more information and that will help parents
30:15
Speaker 2: understand and make maybe more informed decisions about what they
30:20
Speaker 2: choose to do and what life looks like in the
30:22
Speaker 2: longer term. And the other thing to remember, tom On,
30:27
Speaker 2: I was trying to remember this about sort of most
30:30
Speaker 2: people talk about a topic when it affects their life.
30:34
Speaker 2: So for many families who've got a child with HIRSHBRNG
30:36
Speaker 2: disease or they've got Hirshbungs disease in the family, they're
30:40
Speaker 2: talking about it in the years where it affects them,
30:43
Speaker 2: and then you know, we hear this a lot, you know,
30:46
Speaker 2: sort of grow out of it, not necessarily grow out
30:48
Speaker 2: of it, but many children stop being as ill, you know,
30:50
Speaker 2: if we see your currency of illness as for example,
30:53
Speaker 2: later on and as we grow. So there is a
30:57
Speaker 2: huge proportion of people who've got hirshpringses aren't talking about
30:59
Speaker 2: it because it's not a daily discussion topic anymore. Yeah,
31:03
Speaker 2: So I think you're going to see for parents, they're
31:07
Speaker 2: going to see posts that people are making, and we're
31:09
Speaker 2: going to see like the content that sort of is
31:11
Speaker 2: out and about. That's often times, you know, not at
31:15
Speaker 2: all the day, but not oftentimes by people who are
31:16
Speaker 2: living in the moment being affected by it. But there
31:19
Speaker 2: are many positive stories or families living with Hirschbrungs in
31:24
Speaker 2: a way that it's not affecting day to day life.
31:25
Speaker 2: But we don't always see that because you already see
31:27
Speaker 2: what you're in. So I think that's an important acknowledgement
31:30
Speaker 2: as well, because it's helpful to know, which is why
31:34
Speaker 2: things like the body scheme and the community planning and
31:40
Speaker 2: the meetups and stuff are going to be helpful because
31:43
Speaker 2: hopefully we'll stay in contact with those families for longer
31:46
Speaker 2: and we'll be able to see as life sort of
31:50
Speaker 2: settles down and it isn't affected in norway you know
31:54
Speaker 2: that we see we see for many families.
31:58
Speaker 1: Yeah, I think it kind of again goes back to
32:01
Speaker 1: that bubble. I mean, I get messages from people all
32:06
Speaker 1: the time, and one of the messages I had recently was, oh,
32:12
Speaker 1: can you do more episodes where not a lot happens
32:16
Speaker 1: and it's just like, oh, they have Hirsprungs and everything's fine,
32:19
Speaker 1: you know. And I be one that would be like
32:23
Speaker 1: five minutes and probably wouldn't make a podcast, But so
32:27
Speaker 1: I would actually like to do those episodes. And there
32:30
Speaker 1: are some episodes out there of people who've you know,
32:34
Speaker 1: gone on to do really amazing things and their Hirsprungs
32:37
Speaker 1: hasn't really affected them too much. But yeah, it is.
32:42
Speaker 1: It is interesting and he's interesting to take it into
32:44
Speaker 1: context because people are generally going to talk about a
32:48
Speaker 1: lot more when they are going through it, as opposed
32:51
Speaker 1: to because there are there are plenty of people out
32:54
Speaker 1: there spoken to many who they are diagnosed, they had
32:59
Speaker 1: to pull through. They might have some issues, you know,
33:04
Speaker 1: when they're sort of one two years of age, generally
33:09
Speaker 1: it's the shorter segment stories, but they have a couple
33:17
Speaker 1: of issues when they're a little bit younger, but probably
33:20
Speaker 1: past the age of two, three four, all they know
33:24
Speaker 1: is that they have a big scar and that's it
33:27
Speaker 1: and everything else is fine. So there is that there
33:33
Speaker 1: are There are a lot of stories that are out
33:37
Speaker 1: there like that, but again you probably may not have
33:39
Speaker 1: heard them because people probably wouldn't necessarily share them because
33:44
Speaker 1: they think, well, there's not a lot to say.
33:46
Speaker 2: Yeah, And I think that's super important to know those
33:49
Speaker 2: stories me people feel comfortable sharing that. I think that's
33:53
Speaker 2: really important, like information because like we may have seen
33:58
Speaker 2: in that in that study that looked at children age
34:00
Speaker 2: five to eight, not much difference between the short segment
34:02
Speaker 2: and the long segment. But does that carry on being
34:05
Speaker 2: the same. Do we see a divergence in that in
34:08
Speaker 2: later ages? Do we see what? Yeah? What? What is?
34:12
Speaker 2: What are people's experiences? Someone told me on TikTok the
34:14
Speaker 2: the day that their child grew out of hirshbrongs disease
34:16
Speaker 2: without surgery, which I thought was really interesting because and
34:21
Speaker 2: it may have been a little bit of a troll,
34:22
Speaker 2: but I actually said, like, hell me more, we were right.
34:27
Speaker 1: I'd love to know. I'd love to know how you
34:33
Speaker 1: regrow Ganglion sales, because if you do, you'll be a
34:35
Speaker 1: very rich person.
34:36
Speaker 2: That's what I said. But interestingly, yeah, there are so
34:40
Speaker 2: many people that reply to my story, you know, my
34:43
Speaker 2: videos on TikTok, and they say, on my this person,
34:47
Speaker 2: this person, this person, this person had hirshprings seas and
34:49
Speaker 2: now they're this age and they're perfectly fine. It's like, great,
34:52
Speaker 2: let's hear those stories. I really want to hear those
34:54
Speaker 2: stories as well as those that are going through because
34:56
Speaker 2: I think that the whole picture is way better than
34:59
Speaker 2: no picture.
35:00
Speaker 1: So I mean, I mean, I have had a couple
35:03
Speaker 1: of stories that there's one I remember in particular, when
35:07
Speaker 1: I had Louis Healy on the podcast and I had
35:11
Speaker 1: a phone call with him beforehand, and he was like, oh,
35:14
Speaker 1: you know, I don't really know a lot about hirshbrons
35:16
Speaker 1: because it hasn't really affected me. But he yeah, he
35:20
Speaker 1: was like, yeah, you know, it hasn't really affected me.
35:24
Speaker 1: So we just mainly talked about his acting and actually
35:27
Speaker 1: had affected him more than he realized because he didn't
35:30
Speaker 1: know his own his own story. But there are lots
35:34
Speaker 1: of people out there who who don't have as many,
35:41
Speaker 1: you know, symptoms and struggles as others.
35:44
Speaker 2: Yeah, I think that's really interesting. I want to know
35:46
Speaker 2: those stories. Yeah, do we talk about Yeah, put on
35:50
Speaker 2: the podcast on the website. We need to know these stories.
35:53
Speaker 2: Should we talk about the research? And I've sort of
35:57
Speaker 2: chosen these three research projects to talk about because Freddy's
36:02
Speaker 2: enrolled in two of them, which I think is interesting.
36:04
Speaker 2: One is the one that we've seen in the news,
36:06
Speaker 2: and I think that's what that's an interesting one that
36:08
Speaker 2: people are desperate to know about because this looks more
36:10
Speaker 2: of a cure. But I'm going to look talk about
36:14
Speaker 2: this one first, which is which is the more sciencey one,
36:17
Speaker 2: but then I won't go into their one's efforts. So
36:19
Speaker 2: this research project builds on some previous research that's been
36:25
Speaker 2: done that reveals that stem cells exist in the bowels
36:29
Speaker 2: of babies with hirshbrongs disease. So those of you who
36:32
Speaker 2: know will know about ganglion cells and ganglion nerve cells
36:37
Speaker 2: and those they aren't there when we have hirshbrngs diz
36:41
Speaker 2: and then sometimes that's a small portion, sometimes that's a
36:43
Speaker 2: long pur portion. Sometimes that's the whole of the colon.
36:47
Speaker 2: Just depends on the person. But so we know that
36:51
Speaker 2: there are stem cells in the bows of babies with
36:53
Speaker 2: hirshbrongs disease. So essentially I guess the inference areas that
36:58
Speaker 2: they didn't turn into the cells they have done. They're
37:01
Speaker 2: just there, right. So this piece of research it is
37:05
Speaker 2: called let's it's called Hawaii. I love the names of these,
37:08
Speaker 2: but it actually stands for Hirshbrun's advances Working towards a
37:12
Speaker 2: can nowasay's word also logus locking us, I don't know
37:17
Speaker 2: what logo logos okay, working towards auto logos tissue therapies.
37:25
Speaker 2: This is a research study. It's being funded by Bower
37:30
Speaker 2: Research UK and the aim is to look at treatments.
37:34
Speaker 2: So we they are looking at whether the stem cells
37:40
Speaker 2: have where they can be turned on, when they can
37:44
Speaker 2: they grow into functioning nerves after you've been born. That's
37:49
Speaker 2: the question. So it's a really interesting one. It's a
37:53
Speaker 2: PhD that's being funded, so it's an in depth research study,
37:59
Speaker 2: but it's interesting. We talked about stats before, but the
38:03
Speaker 2: stats that they include in this sort of press release
38:06
Speaker 2: and announcement was about one hundred and seventy babies in
38:09
Speaker 2: the UK each year and they are saying around thirty
38:14
Speaker 2: percent of children and have chronic bow problems, so that's
38:18
Speaker 2: constipation in continents or inflammation, and ten percent of those
38:22
Speaker 2: require a long term stoma. So we've talked about different
38:25
Speaker 2: different research, but this is sort of the parceled up
38:29
Speaker 2: studies statistics that they're looking at. But this is a
38:32
Speaker 2: really interesting piece of research. It will take years, you know,
38:38
Speaker 2: a decade to do, but it's going to be really
38:40
Speaker 2: interesting to look at whether the nerve stem cells in
38:45
Speaker 2: the lower part of the bowel can turn into the
38:48
Speaker 2: nerve cells that might make the bowl work normally, and
38:53
Speaker 2: can they prompt that happening. Is there a medication or
38:55
Speaker 2: something that could happen that will turn those on. It's
38:59
Speaker 2: going to be a long time in the maay, but
39:00
Speaker 2: it's a really interesting piece of research I think to
39:06
Speaker 2: see whether whether that's gonna happen. He's that going to
39:12
Speaker 2: be a cure in the future.
39:14
Speaker 1: That's that's the really really interesting I mean, they're all
39:16
Speaker 1: very interesting, but I think it's it's that almost hope,
39:23
Speaker 1: I guess of can you fix hirshprungs? I mean weird,
39:29
Speaker 1: Like we just mentioned, people on TikTok all the time
39:31
Speaker 1: tell us how hirshprungs is fixed. I have people who
39:36
Speaker 1: like to call themselves doctors tell me all the time
39:39
Speaker 1: how you can take this pill and fix hirsprungs, and
39:42
Speaker 1: oh it's wonderful. Yeah, so it's but it would be
39:47
Speaker 1: really interesting to see can you switch on ganglion cells
39:54
Speaker 1: and if you can that that, I mean that would
39:56
Speaker 1: be probably more a game changer than anything else.
40:01
Speaker 2: I think, Yeah, I think so too. That would remove
40:05
Speaker 2: the surgical aspect and we'll all need to see further
40:09
Speaker 2: and I imagine it will be decades rather than a
40:12
Speaker 2: decade of information because it takes a lot of research.
40:16
Speaker 2: But I'm really pleased that Bow Research UK funding that.
40:20
Speaker 2: I'm really pleased that University of Liverpool and alder Hate
40:23
Speaker 2: Children's Hospital are involved in that because I think that
40:26
Speaker 2: is a really interesting study and I know other hospitals
40:29
Speaker 2: around the UK are looking at the stem cells as well,
40:31
Speaker 2: which is really interesting. So we'll have to see how
40:34
Speaker 2: that one goes. The next study is called a low
40:38
Speaker 2: hat and this is long term. Are qualitative and quantitative
40:42
Speaker 2: outcomes of children with Hirshbrings disease and anorectal malformation. So
40:47
Speaker 2: that is another condition that children can be born with
40:51
Speaker 2: that affects essentially your rectum. You are born potentially without
41:03
Speaker 2: the anus and the rects and mouth are not formed properly.
41:06
Speaker 2: It's what I understand about. I don't know too much
41:08
Speaker 2: about it because obviously it's not something that I'm familiar
41:11
Speaker 2: with too much, but are interested in this study. This
41:15
Speaker 2: study follows the experiences and the outcomes of children with
41:21
Speaker 2: Hirschbrings disease and a rectorm affirmation through the years, so
41:26
Speaker 2: we can see what their experience is like and that
41:30
Speaker 2: is going to aid in parent information when a diagnosis
41:34
Speaker 2: and later on. And I think that is really interesting.
41:39
Speaker 2: And I think it's interesting because we're looking at the
41:42
Speaker 2: surgical procedures that are happening now and looking at that.
41:47
Speaker 2: So I think that's really interesting and hopefully will show
41:55
Speaker 2: and be and show the impact of knowledge being helpful
42:00
Speaker 2: in that and whether sort of there are different function
42:05
Speaker 2: ut comes between subgroups and things like that. So yeah,
42:08
Speaker 2: really interesting. That is going to have around one two
42:13
Speaker 2: hundred estimated patients across the whole five years of the study,
42:16
Speaker 2: which I think is really interesting. So, yeah, that's cool.
42:21
Speaker 1: It's a lot more than the two hundred and twenty
42:23
Speaker 1: seven we had last time, Yes, exactly a lot more.
42:28
Speaker 1: That's but that's that's obviously such a good thing as well.
42:33
Speaker 1: The again, the more people we can find, the more
42:38
Speaker 1: in depth the studies can be, the more legitimate, I
42:42
Speaker 1: guess the studies become as well. So that that is
42:46
Speaker 1: one two hundred is it's really really high. That's an
42:50
Speaker 1: excellent number.
42:51
Speaker 2: Yeah, it's really interesting. I think that that's going to
42:54
Speaker 2: be great on Freddy's enrolled in this, so we get
42:56
Speaker 2: surveys at regular points, right, so just have the first
42:59
Speaker 2: one his year one, and that's going to be really interesting.
43:04
Speaker 2: And oh, I guess I hope that they will continue
43:07
Speaker 2: to fund this so that we can see outcomes into
43:11
Speaker 2: your twenties, thirties, forties, fifties, seventies, because when we're looking
43:16
Speaker 2: at people with Heshbrung's disease who were born fifty years ago,
43:19
Speaker 2: the surgical techniques are so different that it's almost impossible
43:24
Speaker 2: to say and to look at the to compare isn't it.
43:29
Speaker 2: You know, well, I think that's a really great.
43:33
Speaker 1: And just while we've got sort of five minutes to go,
43:37
Speaker 1: you mentioned that Freddy's enrolled in a couple of these studies.
43:42
Speaker 1: For anybody who's not, how, I know you mentioned it
43:44
Speaker 1: a little bit about the survey, but how does that
43:47
Speaker 1: process kind of work? Do they have they sort of
43:50
Speaker 1: gone in depth on that.
43:51
Speaker 2: Yeah, so what in terms of enrolling, how does that work?
43:54
Speaker 2: Is that what you're asking? How does it?
43:56
Speaker 1: Ha just everything? How the whole process?
43:58
Speaker 2: So we're at all the Hate Children's Hospital, which which
44:02
Speaker 2: is where the studies that I've talked about taking place,
44:05
Speaker 2: is a third study as well, and you enroll by
44:10
Speaker 2: simply being asked by the surgeons that are taking care
44:13
Speaker 2: of you. The surgeons that look after Hrshbrong's d's are
44:16
Speaker 2: involved in the research. Therefore they ask if you want
44:19
Speaker 2: to sign up? And I actively really are interested in
44:23
Speaker 2: the whole research side of things. So I think it's
44:26
Speaker 2: really important. And it's your information is anonymous, so it's
44:31
Speaker 2: not going to be Freddie Evans's experienced that like this
44:33
Speaker 2: in the future. It's going to be is part of
44:35
Speaker 2: a number. And I think that's really helpful, anything to
44:39
Speaker 2: help other parents, and I novinly got a few minutes
44:41
Speaker 2: to go, so I'll mention the other one which has
44:42
Speaker 2: just started only enrolled. I was just over a month ago.
44:46
Speaker 2: But this is called the Beach Study. How cool are
44:49
Speaker 2: the names?
44:49
Speaker 1: They're just really good.
44:51
Speaker 2: This is Baby's with Entroglitis, a study of fecal col
44:54
Speaker 2: protecting in hirshbrongs didas. The idea is that when children
44:59
Speaker 2: are in a hospital and they are going to take
45:03
Speaker 2: samples of poo or stonewrap work depending and they're going
45:06
Speaker 2: to test those for feecal cow protecting. The idea being
45:11
Speaker 2: that potentially maybe we could identify children who are more
45:17
Speaker 2: likely to get enter clitis than children who don't because
45:21
Speaker 2: they're looking for levels of cow protecting. Is that a
45:23
Speaker 2: useful test? It's not expected to be a definitive study,
45:28
Speaker 2: but yeah, will it be useful in the future. That's
45:33
Speaker 2: what's helpful to find out if more children are more
45:35
Speaker 2: likely to get it or not. You know, where do
45:37
Speaker 2: you fall into the fifty percent of children that get
45:39
Speaker 2: enter a clitis or do you not? So that's an
45:41
Speaker 2: interesting one for me as well, particularly as they know
45:43
Speaker 2: it's not going to be definitive, but it's interesting.
45:45
Speaker 1: I think they're all fantastic and really really interesting. And
45:48
Speaker 1: thank you so much for sharing both the research and
45:53
Speaker 1: the stats with us. And we will coming up next
45:57
Speaker 1: week will be a part two where we will dive
46:01
Speaker 1: into a little bit more on the research. We will
46:05
Speaker 1: the website launch, we'll do that next week, and also
46:09
Speaker 1: an update on your son Freddie. And just very quickly,
46:13
Speaker 1: where can people find you?
46:17
Speaker 2: Yes, you can find me at Live with Georgina, on
46:20
Speaker 2: TikTok and Instagram. Mostly Instagram is where I prefer to be,
46:23
Speaker 2: but you have to hang out on TikTok we these
46:25
Speaker 2: days and also at Hirshprings Disease dot co dot uk.
46:30
Speaker 1: Brilliant. Thank you ever so much, Thank you, thank you
46:38
Speaker 1: for listening to the podcast. Find us on Instagram, Tom's
46:42
Speaker 1: Underscore Hirshprungs Underscore Podcast. Listen to previous episodes on Spotify
46:47
Speaker 1: by searching Tom's Hirshbrung's podcast. The s