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Episode 146 - With Tiffany Dwyer · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirschsprungs disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
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  Speaker 1: Each episode we will explore real stories and honest conversations
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  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in. Hello and welcome to episode 146 of Tom's
• 0:49
  Speaker 1: Hirschsprung's podcast. I am delighted to be joined by this morning,
• 0:53
  Speaker 1: or this evening, where you are, by Tiffany. Welcome to
• 0:58
  Speaker 1: the podcast.
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  Speaker 2: Hello.
• 1:01
  Speaker 1: Thanks so much for coming on. Now, we are here
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  Speaker 1: to talk about another Hirschsprung story, Your Child, who has
• 1:10
  Speaker 1: long segment Hirschsprungs. And what's been quite a journey so far.
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  Speaker 1: Please start from wherever you feel comfortable.
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  Speaker 2: Okay, well, we'll start from birth.
• 1:26
  Speaker 3: So Arlo, he was born at the Gold Coast University
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  Speaker 3: Hospital on the 25th of April, 2025. He arrived by
• 1:36
  Speaker 3: emergency C-section at 36 weeks and five days.
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  Speaker 2: So he was slightly premmy, but very borderline. We had
• 1:47
  Speaker 2: a pretty easy first 20 hours.
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  Speaker 3: Everything seemed pretty normal. He was feeding well. but he
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  Speaker 3: made this constant grunting noise. And I was my third child,
• 2:00
  Speaker 3: so I knew in my mum's mind that this was
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  Speaker 3: not the norm. They kept reassuring, they'd come in, they'd
• 2:09
  Speaker 3: do his obs, they kept reassuring us, everything's fine, his
• 2:13
  Speaker 3: obs look great. We hit about that 20-hour mark and
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  Speaker 3: all of a sudden everything went downhill.
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  Speaker 1: He....
• 2:23
  Speaker 3: His obs had started to drop. His oxygen levels had dropped.
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  Speaker 3: His grunting hadn't stopped. For the full 20 hours, he
• 2:30
  Speaker 3: grunted the entire time. And so he was rushed over
• 2:34
  Speaker 3: into special care with metabolic acidosis and respiratory distress. While
• 2:41
  Speaker 3: in the kerfuffle of all of that, he passed his meconium,
• 2:46
  Speaker 3: which obviously kind of deterred everyone from any real issues
• 2:51
  Speaker 3: there at the time.
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  Speaker 2: So we stayed in special care for a few weeks.
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  Speaker 2: He was diagnosed with a congenital heart condition. So he's
• 3:02
  Speaker 2: got both ASD and VSD. While we were in.
• 3:06
  Speaker 3: Special care, our feeding journey just became next level. They
• 3:12
  Speaker 3: put a lot of it back to he had quite
• 3:14
  Speaker 3: an immature jaw.
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  Speaker 2: Around just being preemie.
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  Speaker 3: He presented like a normal premature baby, even though he
• 3:21
  Speaker 3: was right on the cusp of preemie.
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  Speaker 2: So our feeding journey continued for a few weeks. While
• 3:28
  Speaker 2: we were in special care, we had a few episodes where.
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  Speaker 3: I mean, he never opened his bowels after the meconium.
• 3:35
  Speaker 2: So from there on.
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  Speaker 3: It was only through digital stimulation that we could get
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  Speaker 3: anything out of him. Um, and like, I kept saying
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  Speaker 3: that this isn't normal. Like I've got two other kids,
• 3:48
  Speaker 3: they poo fine. We've never had these issues before. Um,
• 3:52
  Speaker 3: but they all just kept reassuring me. Some breastfed babies
• 3:55
  Speaker 3: just take, they just don't poo as often. Um, so
• 3:59
  Speaker 3: we went home on a hospital in the home program
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  Speaker 3: around his feeding. And the goal was that we'd probably
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  Speaker 3: do two weeks and we'd hopefully get his feeding tube
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  Speaker 3: out and we'd be all in our way. Well, the
• 4:12
  Speaker 3: journey just rollercoasted from there. We'd get really well with
• 4:18
  Speaker 3: the feeding.
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  Speaker 2: He'd do great. And then a couple of days later,
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  Speaker 2: he'd drop back off again.
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  Speaker 3: And it all kind of circulated around that he wasn't
• 4:26
  Speaker 3: passing any stool. And so as soon as we'd get
• 4:29
  Speaker 3: some stool out of him, he'd be feeding again.
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  Speaker 2: He'd be doing great. And so this circle went on for,
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  Speaker 2: I think it was about six weeks. And we got...
• 4:40
  Speaker 2: for the six week mark.
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  Speaker 3: And I just knew in my mum gut that this
• 4:45
  Speaker 3: is not normal.
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  Speaker 2: Like he should be able to go.
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  Speaker 3: We shouldn't have to do any digital stimulation to get
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  Speaker 3: these poos out. We were getting to like 10 and
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  Speaker 3: 12 days before we would be doing these digital stimulations.
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  Speaker 3: So we knew that we were right on that borderline
• 5:00
  Speaker 3: of why are.
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  Speaker 2: We not pooing? So we just decided it's time to
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  Speaker 2: head in. Time for a proper check. Let's go in.
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  Speaker 3: So we went into the emergency and the doctor that
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  Speaker 3: saw us there, he heard our story. And as soon
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  Speaker 3: as he saw us, he said, I think it sounds
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  Speaker 3: like Hirschbrand's disease. And we'd never, ever heard of Hirschbrand's
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  Speaker 3: disease before. It was something brand new to us. We
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  Speaker 3: both looked at each other, me and my partner like this,
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  Speaker 3: what is he talking about? Anyway, the surgical team had
• 5:30
  Speaker 3: come and reviewed and they were on the cusp. They said,
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  Speaker 3: oh no, we don't think it's anything serious. And we'd
• 5:36
  Speaker 3: also just given a suppository before going into the hospital.
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  Speaker 3: So He'd passed his bowels. Everything looked normal on their x-rays.
• 5:44
  Speaker 3: So they kind of sent us on our way. And
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  Speaker 3: then a few days later, he was vomiting really bad.
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  Speaker 3: His feeding had dropped right off. And we just said, no,
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  Speaker 3: let's go back in. So we went back into emergency.
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  Speaker 3: We were admitted there and then. And we started our
• 6:00
  Speaker 3: journey with biopsies and things like that. Arlo's first biopsy
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  Speaker 3: came back inconclusive. So a second one was done a
• 6:11
  Speaker 3: couple of days later, and that one came back with
• 6:16
  Speaker 3: that he had Hirschbrands.
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  Speaker 2: From there, it's a bit of a blur.
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  Speaker 3: That next month is a real blur of us learning
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  Speaker 3: how to do bowel irrigations and things like that to
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  Speaker 3: just keep him safe.
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  Speaker 2: And we did so. We came home.
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  Speaker 3: Our team was absolutely amazing with the way that they
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  Speaker 3: trained us. Even our seven-year-old daughter got in and learned
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  Speaker 3: how to do it because dad works long hours to
• 6:44
  Speaker 3: make sure that somebody else could help me if need be.
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  Speaker 3: Something we never wanted to ask of her, but she
• 6:49
  Speaker 3: was quite happy to jump in and learn. And so
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  Speaker 3: we then discussed the pull through. It was going to
• 6:58
  Speaker 3: happen at three months, but unfortunately Arlo caught some virus
• 7:04
  Speaker 3: at the time. that pushed that back. So we were
• 7:06
  Speaker 3: six weeks back and we got to four months when
• 7:09
  Speaker 3: we had the pull-through. Arlo had the Swenson pull-through procedure performed.
• 7:18
  Speaker 2: It went for between nine and ten hours, I believe.
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  Speaker 3: It was the worst time of our life. Time stood still. I, yeah,
• 7:30
  Speaker 3: cannot believe it. Everything went really well, though, surgery-wise. We
• 7:35
  Speaker 3: came out without a stoma, which we were really excited about.
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  Speaker 2: We were really worried.
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  Speaker 3: They'd said if we got over about a six-hour mark,
• 7:43
  Speaker 3: potentially that's going to mean a stoma. But our surgeon
• 7:46
  Speaker 3: was really, really happy. Surgery went really well. Within 36 hours,
• 7:51
  Speaker 3: he was pooing.
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  Speaker 1: On his own.
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  Speaker 3: It was the biggest milestone we never thought we'd have
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  Speaker 3: to be jumping up with joy for. Not long after
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  Speaker 3: his pull through, Arlo just ran into all sorts of complications.
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  Speaker 3: We had so many viral illnesses. He had intercolitis. We
• 8:16
  Speaker 3: ended up with, he kept getting reoccurring abscesses on his bottom, which.
• 8:22
  Speaker 2: We later had to have fistula surgery to improve.
• 8:28
  Speaker 3: Then we went down the Botox fast because he was
• 8:32
  Speaker 3: not stooling successfully anymore again. We were getting up to
• 8:35
  Speaker 3: about five or six days without passing stools on his own.
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  Speaker 3: When he was passing, it was very hard. It was
• 8:42
  Speaker 3: not easy for him to do. So we found ourselves
• 8:44
  Speaker 3: back at bowel irrigations probably about two months in after
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  Speaker 3: the pull through.
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  Speaker 2: So we've now done five rounds of Botox.
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  Speaker 3: We've just done our fifth round now. I think three
• 8:59
  Speaker 3: weeks in from our fifth round of Botox. Unfortunately for Arlo,
• 9:03
  Speaker 3: we're not seeing the results that we would want from Botox.
• 9:08
  Speaker 3: You know, the goal is to hopefully push it out
• 9:10
  Speaker 3: to six to nine months before having to do it again.
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  Speaker 3: We're not even getting to that three month mark, unfortunately,
• 9:17
  Speaker 3: without us being back to enemas and irrigations and things
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  Speaker 3: like that again. So, um, We have just discussed with
• 9:26
  Speaker 3: our surgical team a few new options that we're in
• 9:31
  Speaker 3: the plans for. So we've discussed maybe looking at Botox
• 9:36
  Speaker 3: B injections because he maybe had that rare part where
• 9:42
  Speaker 3: he can know it can't seem to work properly for
• 9:46
  Speaker 3: the Botox A injections. Um, we're also talking about a stoma, um,
• 9:51
  Speaker 3: things like that just for, to give his bowel some break.
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  Speaker 3: You know, we, we're aware that some kids just need
• 9:57
  Speaker 3: that bowel rest and a little bit of aid. until
• 10:01
  Speaker 3: they learn how to use those muscles a bit better. So, yeah,
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  Speaker 3: so that's the plan of it. I've just realized I'm
• 10:10
  Speaker 3: going to have to stop for a second. I just
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  Speaker 3: realized my phone is about to die.
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  Speaker 2: So give me one second and I'm just going to
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  Speaker 2: grab my chart ducks.
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  Speaker 1: But yeah, I mean, that sounds like quite a story
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  Speaker 1: so far. So, I mean, that's been quite a journey
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  Speaker 1: so far and obviously not straightforward. There's a couple of
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  Speaker 1: things in there that I have come across before and
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  Speaker 1: heard before. There's a couple of things that I haven't
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  Speaker 1: heard too much about.
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  Speaker 3: One....
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  Speaker 1: Being the ASD and the VSD, the heart complications, which
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  Speaker 1: I have heard before about Hirschsprung's people. That happened to me.
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  Speaker 1: But yeah, could you explain just a little bit more
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  Speaker 1: about what they are? Because I don't think I've come
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  Speaker 1: across those before.
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  Speaker 2: Yeah, absolutely.
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  Speaker 3: So an ASD and a VSD are essentially holes within
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  Speaker 3: the heart. The VSD is, the one that passes in
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  Speaker 3: the lower chambers, but it passes the deoxygenated blood and
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  Speaker 3: oxygenated blood back and forth where they shouldn't be allowed to.
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  Speaker 3: So it can cause further complications. Luckily enough, Arlo's are
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  Speaker 3: quite small. So we're sitting in a watch and wait
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  Speaker 3: and see if they heal themselves, which is great. One
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  Speaker 3: less thing for us to stress about.
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  Speaker 2: Yeah.
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  Speaker 1: Okay. Thanks to that, because I hadn't really... I hadn't
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  Speaker 1: really come across that before, but I have come across
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  Speaker 1: things like holes in hearts and whatnot. So, yeah, something
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  Speaker 1: sort of very similar. But something I have come across
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  Speaker 1: before is when you talk about feeding. And I've had
• 12:04
  Speaker 1: people on both sides where nurses have said, oh, X, Y,
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  Speaker 1: Z has happened because the child's breastfed. Oh, X, Y,
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  Speaker 1: and Z has happened because the child's formula fed. And
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  Speaker 1: for some parents, I can remember one story very vividly
• 12:22
  Speaker 1: on this podcast where the child was formula fed and
• 12:25
  Speaker 1: that was the excuse for everything. It was, oh, formula fed.
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  Speaker 1: That's why this, oh, formula fed. That's why this has happened. Yeah.
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  Speaker 3: Well, we, that's kind of where we, when we sat
• 12:35
  Speaker 3: in ED and said, we want answers. It was, it
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  Speaker 3: was basically around that because we had said, they kept
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  Speaker 3: saying he's formula, he's, he's breastfed. This can happen. And
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  Speaker 3: I had actually suffered from an infection after the C-section.
• 12:50
  Speaker 3: So I actually lost my breast milk supply quite quickly
• 12:53
  Speaker 3: and had to work hard to build it back up.
• 12:56
  Speaker 3: But in that time, we did have to supplement through formula.
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  Speaker 3: So I put my foot down and said, no, he's
• 13:02
  Speaker 3: not just a breastfed baby. This is not the answer
• 13:04
  Speaker 3: for breastfeeding. He's been supplemented. So we know that that's
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  Speaker 3: not it.
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  Speaker 1: Yeah. Yeah. I mean, but it's good that you have
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  Speaker 1: obviously have experience of having other children as well so
• 13:18
  Speaker 1: that you can sort of compare. I don't know whether
• 13:21
  Speaker 1: that's the right word.
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  Speaker 2: Yeah, no, it's so true. It's so true.
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  Speaker 3: I think if he had been our first, I probably
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  Speaker 3: would have just taken their answers like, oh, okay, yep,
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  Speaker 3: and thought it's just me. I'm just a new mum
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  Speaker 3: that doesn't really understand it, you know. But, yeah, it
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  Speaker 3: was nice to kind of have some reassurance there that
• 13:40
  Speaker 3: you're right, yeah.
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  Speaker 1: But you kind of go to compare and go, actually,
• 13:45
  Speaker 1: I'm sure this isn't supposed to happen. You know, you go, well,
• 13:51
  Speaker 1: this didn't happen with, and obviously, I presume there's no
• 13:56
  Speaker 1: sort of family history or anything.
• 13:59
  Speaker 2: No, no family history at all. No, we'd never ever
• 14:02
  Speaker 2: heard of it.
• 14:03
  Speaker 1: No, no. So, so in terms of her sprungs, you
• 14:05
  Speaker 1: had nothing to compare it to, but in terms of
• 14:07
  Speaker 1: having other children, you can kind of go, well, this,
• 14:09
  Speaker 1: this actually isn't right. And I mean, I've, lost count
• 14:13
  Speaker 1: of the amount of parents that I've spoken to that
• 14:17
  Speaker 1: have had very similar feelings at that time and gone
• 14:22
  Speaker 1: well I don't know what's wrong and obviously you because
• 14:27
  Speaker 1: you never heard of Hirschsprungs you can't go well I'm
• 14:30
  Speaker 1: sure it's Hirschsprungs but because you didn't you didn't know
• 14:32
  Speaker 1: what was wrong but you knew something was wrong yeah
• 14:35
  Speaker 1: and I think that's a really really important message that I'll,
• 14:40
  Speaker 1: you know, forever have on this podcast that will be,
• 14:43
  Speaker 1: you know, if you, you know, if you feel something's wrong.
• 14:49
  Speaker 2: Trust your gut. Exactly.
• 14:51
  Speaker 1: It's an odd thing to say with Hirschsprungs, with trusting our,
• 14:55
  Speaker 1: that's the last thing we should be trusting. But I
• 14:57
  Speaker 1: know what you mean. But, but yeah, if you just
• 15:05
  Speaker 1: trust those instincts and, and because you, so, so many
• 15:10
  Speaker 1: people have gone out, I think something's wrong, I'm sure
• 15:13
  Speaker 1: something is, and it's turned out to be, let's see
• 15:16
  Speaker 1: why they're here, it had to be Hirschbrach. So, it's
• 15:21
  Speaker 1: something that, but like you said, if you were perhaps
• 15:25
  Speaker 1: a first-time mum, you'd have gone, oh, okay, fine, oh,
• 15:29
  Speaker 1: maybe it's just, oh, yeah, maybe that's normal, you know, whatever,
• 15:34
  Speaker 1: and wouldn't necessarily have had the same instincts. So, I guess,
• 15:40
  Speaker 1: and also as well, it's something that fascinates me as well.
• 15:44
  Speaker 1: When people have children without Hirschsprungs and children with Hirschsprungs,
• 15:50
  Speaker 1: we're very similar in my family. I have three brothers.
• 15:53
  Speaker 1: They don't have Hirschsprungs. I do. I was second born.
• 15:56
  Speaker 1: I don't know if that makes a difference, you know,
• 15:58
  Speaker 1: but sometimes it's the first born and doesn't pass down.
• 16:03
  Speaker 1: Sometimes third born, sometimes second born. It doesn't seem to
• 16:07
  Speaker 1: be a kind of, I don't think.
• 16:10
  Speaker 2: I don't think there is, is there? Yeah.
• 16:14
  Speaker 1: No, it just doesn't seem to be a kind of...
• 16:16
  Speaker 1: I mean, obviously, the genes are there. So it's possible
• 16:25
  Speaker 1: that any child that you have bought could develop Hirschsprung
• 16:32
  Speaker 1: if the genes are there. But yeah, there doesn't seem
• 16:36
  Speaker 1: to be a pattern and nobody... has ever been able
• 16:39
  Speaker 1: to explain it. I don't know if anybody, that kind
• 16:42
  Speaker 1: of question has ever crossed your mind at all.
• 16:46
  Speaker 2: Yeah, definitely.
• 16:46
  Speaker 3: So we've had that conversation with our team. And one
• 16:50
  Speaker 3: thing that they're really looking at at the moment, because
• 16:52
  Speaker 3: we've gone down that genetic path now, and they're actually
• 16:57
  Speaker 3: looking more around the heart, the holes in the heart
• 17:01
  Speaker 3: and looking at what time of the pregnancy did that
• 17:04
  Speaker 3: occur and Because it would have been around the same
• 17:06
  Speaker 3: sort of time that those nerves that should have grown
• 17:10
  Speaker 3: haven't grown.
• 17:12
  Speaker 2: So they're looking more around the genetic.
• 17:14
  Speaker 3: Side of the heart rather than the Hirschbrand side because
• 17:17
  Speaker 3: ours comes back that he has no genetic markers for Hirschbrands.
• 17:23
  Speaker 1: That's another thing that sort of, The amount of people
• 17:27
  Speaker 1: I talk to and they go through the genetic testing
• 17:29
  Speaker 1: and you think, right, okay, I'm going to get some answers.
• 17:32
  Speaker 1: It says it's genetic testing and it's going to work
• 17:34
  Speaker 1: and then nothing. And I don't know whether that leaves
• 17:40
  Speaker 1: you more confused or less confused.
• 17:42
  Speaker 3: I think it's much more confused. And I think it's just,
• 17:46
  Speaker 3: you know, genetics is such a new thing. area of
• 17:50
  Speaker 3: education so I think you know in years to come
• 17:53
  Speaker 3: we're definitely going to have more understanding around the genetic
• 17:55
  Speaker 3: side of Hirschbrands but right now they're still in that
• 17:58
  Speaker 3: basic stages where they can really only detect those basic
• 18:03
  Speaker 3: abnormalities at the moment you know.
• 18:05
  Speaker 1: Yeah I do I think again this hasn't come from
• 18:10
  Speaker 1: my own thoughts it's come from people I've spoken to
• 18:13
  Speaker 1: doctors nurses etc that the next 10 years will be
• 18:16
  Speaker 1: really really interesting.
• 18:18
  Speaker 2: Yes, Jess, I think so.
• 18:20
  Speaker 1: Really interesting. So, yeah, I think by the time Arlo's 10,
• 18:25
  Speaker 1: I think we might. I mean, it's a long time away, granted,
• 18:28
  Speaker 1: but we might know an awful lot more about how
• 18:36
  Speaker 1: and why and et cetera. But who knows? Who knows?
• 18:40
  Speaker 1: Another point you made as well was sort of the
• 18:44
  Speaker 1: post-surgery complications. And the Botox as well. Is it like
• 18:51
  Speaker 1: you said, five rounds?
• 18:53
  Speaker 2: Yes, we've just done our fifth round of Botox now.
• 18:56
  Speaker 3: So we did this one as an emergency round because
• 18:59
  Speaker 3: the previous one, we didn't even make the two month
• 19:02
  Speaker 3: mark before we were back doing irrigations again. So we
• 19:07
  Speaker 3: did an emergency Botox this time around to buy us
• 19:10
  Speaker 3: some time to do some planning around what the next
• 19:13
  Speaker 3: steps are going to look like because obviously going back
• 19:16
  Speaker 3: every two months to do it is not feasible right
• 19:19
  Speaker 3: now for us it doesn't give us the quality of
• 19:22
  Speaker 3: life that we need as a family so.
• 19:25
  Speaker 1: Yeah yeah yeah and I've spoken to many people who've
• 19:29
  Speaker 1: had some similar experiences where it's I don't know if
• 19:33
  Speaker 1: it was explained to you that this was sort of
• 19:35
  Speaker 1: like a one or thinking it was going to be
• 19:37
  Speaker 1: a one and done thing or whether it was explained
• 19:39
  Speaker 1: that this was going to take multiple tries No, so
• 19:42
  Speaker 1: it really.
• 19:42
  Speaker 3: Took until probably about the third round of Botox.
• 19:46
  Speaker 2: We were like, you know, we were told post pull through,
• 19:49
  Speaker 2: he'll be fine. He'll be pooing. We won't have any trouble. We'll,
• 19:52
  Speaker 2: you know, they said the first year of the life is,
• 19:54
  Speaker 2: is pretty rough, but you'll get through it.
• 19:57
  Speaker 3: You know? Um, and unfortunately, I mean, that's not, And
• 20:01
  Speaker 3: it wasn't until, I think, yeah, it would have been
• 20:03
  Speaker 3: around our third round of Botox. And we saw, when
• 20:07
  Speaker 3: I saw one of the gastroenterologists and he said, you know, it's,
• 20:12
  Speaker 3: I think the one thing that we all get wrong
• 20:14
  Speaker 3: is that we talk to you, we talk to the
• 20:17
  Speaker 3: parents about it being cured, basically. And, you know, and
• 20:22
  Speaker 3: that's the thing. Herf runs, it isn't a cure to
• 20:26
  Speaker 3: have the pull-through procedure. It's life-saving to have it, but
• 20:30
  Speaker 3: it doesn't cure the dysmotility that goes on.
• 20:33
  Speaker 1: Yeah. Yeah. Yeah. I mean, if anyone does find the cure,
• 20:37
  Speaker 1: that'd be great. I've been waiting in 31 years. So
• 20:40
  Speaker 1: if anyone finds the cure, brilliant, bring it along. But yeah,
• 20:45
  Speaker 1: it is right because I think the language around even
• 20:50
  Speaker 1: in a medical setting, is something that does need looking at.
• 20:55
  Speaker 1: Because like you say, I think there are, especially if
• 21:00
  Speaker 1: you're going into this, you know, having just heard about
• 21:05
  Speaker 1: the condition, like so many parents have, there's not many
• 21:09
  Speaker 1: that I've spoken to that know what it is pre-diagnosis.
• 21:16
  Speaker 1: You're going into this the first time, You don't know
• 21:18
  Speaker 1: if it's a cure, not a cure. You take medication
• 21:22
  Speaker 1: for it. You don't take medication.
• 21:24
  Speaker 3: Yeah.
• 21:26
  Speaker 1: Because, again, there's so many different variables. And if you
• 21:29
  Speaker 1: hear the word, are we going to do this all through?
• 21:32
  Speaker 1: And then, you know, away you go. Why would you
• 21:36
  Speaker 1: not assume that it would be a cure, quote, unquote?
• 21:41
  Speaker 1: So I think that language is really, really important.
• 21:45
  Speaker 3: I think so, too.
• 21:46
  Speaker 1: Yeah. Yeah. And it's just, it's just making people aware that, well,
• 21:52
  Speaker 1: I guess it's a, it's a managed management condition, I guess.
• 21:55
  Speaker 2: Yes, absolutely.
• 21:57
  Speaker 1: Yeah. And the important thing to say as well is everybody's,
• 22:02
  Speaker 1: everybody's different. I mean, there's so many different types.
• 22:05
  Speaker 3: And I think that's the biggest thing that will come
• 22:07
  Speaker 3: into like with the research is it makes it really
• 22:09
  Speaker 3: difficult because our gut microbe is so messed up by
• 22:14
  Speaker 3: so many different factors.
• 22:16
  Speaker 2: It's so hard to see how is.
• 22:18
  Speaker 3: That impacting Hirschbron's or is it just this solo case
• 22:22
  Speaker 3: or is it because this person eats this and things.
• 22:25
  Speaker 2: You know, it's going to be so difficult to.
• 22:28
  Speaker 3: Actually find some stability around the research when the research
• 22:34
  Speaker 3: has so many factors that come into play.
• 22:36
  Speaker 1: Yeah. Yeah. I mean, that's, I mean, I guess the
• 22:39
  Speaker 1: one good thing with that is it keeps me in
• 22:41
  Speaker 1: a podcast. It means every story is different. It'd be
• 22:44
  Speaker 1: a bit boring if everyone was the same. But it's
• 22:47
  Speaker 1: not great for everyone else. But it's, yeah, it's like
• 22:51
  Speaker 1: you say, everybody is different. And, I mean, it's not
• 22:55
  Speaker 1: just the different types as well. I know we talked
• 22:59
  Speaker 1: a little bit about long segment, but obviously there's short,
• 23:02
  Speaker 1: there's total ganglionosis, there's several, six different types. But within
• 23:09
  Speaker 1: those different types are so many other different factors that
• 23:13
  Speaker 1: it becomes really, really difficult to... even look at one
• 23:17
  Speaker 1: person's story and go, oh, well, that will be the
• 23:20
  Speaker 1: way my story goes.
• 23:22
  Speaker 3: So at our hospital currently, we've got, there's three different
• 23:27
  Speaker 3: Hirschbron patients and we're all on very different journeys. We're
• 23:30
  Speaker 3: all around very, very similar ages. We're all in that
• 23:34
  Speaker 3: first kind of year, year to two years, but all
• 23:38
  Speaker 3: on very different journeys, have all had very different outcomes.
• 23:42
  Speaker 3: And yeah, and it's just interesting in itself just to
• 23:45
  Speaker 3: see the people we've met that, how different it can
• 23:48
  Speaker 3: be from one kid to the next.
• 23:50
  Speaker 1: It is. It's hugely different. Hugely different. And it's not
• 23:54
  Speaker 1: just the physical signs as well. It can kind of...
• 24:01
  Speaker 1: But things like diet, you know, some things may agree
• 24:04
  Speaker 1: with you, some things may not.
• 24:06
  Speaker 2: Yeah, and then the other kid, they're going to agree
• 24:09
  Speaker 2: with them. Yeah, exactly.
• 24:11
  Speaker 1: Have you found that can possibly not just from diet,
• 24:16
  Speaker 1: but from other parts, that sort of, I guess, trial
• 24:19
  Speaker 1: and error method.
• 24:21
  Speaker 3: Yeah, look, I mean, it's definitely a trial and error
• 24:23
  Speaker 3: for everything. Even when we look at like the medication
• 24:26
  Speaker 3: side of things, it's very much a trial and error.
• 24:29
  Speaker 3: We're still very much in the thick of that trial
• 24:32
  Speaker 3: and error stage with his laxatives. Arlo, unfortunately, is taking
• 24:37
  Speaker 3: like the highest dose laxatives that we can possibly give,
• 24:41
  Speaker 3: well above what he should be having for his age
• 24:44
  Speaker 3: at the moment. And, you know, we find even just
• 24:49
  Speaker 3: with the feeding side of things, because we struggle with
• 24:53
  Speaker 3: his feeding, getting him to have more water in his
• 24:59
  Speaker 3: bowels is the hardest thing possible. You know, that's the
• 25:02
  Speaker 3: first thing that goes. Yeah.
• 25:04
  Speaker 2: As soon as we see the feeding drop, we.
• 25:07
  Speaker 3: All know, oh gosh, the laxatives need to jump up
• 25:10
  Speaker 3: or we're going to run into issues here and there.
• 25:12
  Speaker 3: And unfortunately for Arlo, with the amount of viruses that
• 25:15
  Speaker 3: he's caught, the amount of dehydration that he gets, which
• 25:19
  Speaker 3: automatically impacts his bowels straight away, is just probably the
• 25:24
  Speaker 3: hardest thing that we're battling.
• 25:26
  Speaker 2: At the moment.
• 25:27
  Speaker 3: Yeah.
• 25:28
  Speaker 1: Yeah, and that's, I think dehydration is one of the
• 25:33
  Speaker 1: biggest things. But I think that goes across all ages
• 25:39
  Speaker 1: and all types. I think that that's really one of the,
• 25:42
  Speaker 1: certainly from what I've seen, that's one of the things
• 25:45
  Speaker 1: that stays fairly consistent with all Hirschsprung's people because we
• 25:50
  Speaker 1: are missing a part of the bowel. So we are missing,
• 25:53
  Speaker 1: no matter what type you have, you will be missing
• 25:55
  Speaker 1: something if you've had to pull through. So you are
• 26:00
  Speaker 1: going to not absorb as much water as as you
• 26:05
  Speaker 1: should be so it's it's something that that again I
• 26:09
  Speaker 1: mean I think I struggle with and I think a
• 26:11
  Speaker 1: lot of others with Hirschsprung's struggle with that you know
• 26:15
  Speaker 1: that dehydration and especially as you get older remembering because
• 26:20
  Speaker 1: you get so busy remembering to oh actually I'd probably
• 26:24
  Speaker 1: need to I haven't drunk anything for ages I probably
• 26:26
  Speaker 1: should do that Yeah, that's it.
• 26:28
  Speaker 3: For, you know, for me, if I go a day
• 26:30
  Speaker 3: without drinking that much water, it really isn't that big
• 26:33
  Speaker 3: of an impact. But to Hirshburn's people, it unfortunately can
• 26:38
  Speaker 3: be really impactful.
• 26:40
  Speaker 1: And I imagine the younger you are as well, it's
• 26:43
  Speaker 1: going to be also really, really important because I can
• 26:47
  Speaker 1: imagine as soon as that water level starts to drop
• 26:52
  Speaker 1: and dehydration starts to set in, it then messes with
• 26:56
  Speaker 1: everything else.
• 26:57
  Speaker 2: It sure does.
• 26:59
  Speaker 1: Which then becomes increasingly more complicated, I guess.
• 27:09
  Speaker 2: Yes, it definitely does.
• 27:10
  Speaker 1: Yeah, it's a tough one. It's a tough one. But again,
• 27:13
  Speaker 1: there's probably a lot of things that have happened in
• 27:17
  Speaker 1: the last 15 months, 14 months that you thought you'd
• 27:24
  Speaker 1: probably never have to do in your life.
• 27:28
  Speaker 2: You know, it's really funny.
• 27:29
  Speaker 3: So I actually was in a profession prior to this
• 27:35
  Speaker 3: where I actually helped quadriplegics and paraplegics. So I dealt
• 27:39
  Speaker 3: with lots of stomas prior to this and lots of
• 27:43
  Speaker 3: bowel irrigations and manual disinfections and things like that. So
• 27:48
  Speaker 3: for me, it was daunting because it was my own child.
• 27:52
  Speaker 3: But I often say I was blessed to have this
• 27:56
  Speaker 3: kid because of what I already knew to keep him alive,
• 27:59
  Speaker 3: if that makes sense.
• 28:00
  Speaker 1: Absolutely. I mean, that's got to be a huge plus,
• 28:06
  Speaker 1: I guess, having to, again, but something you probably never
• 28:10
  Speaker 1: thought you'd have to deal with personally.
• 28:13
  Speaker 2: No, no, absolutely not.
• 28:15
  Speaker 1: But I guess that's really handy, having to deal, having
• 28:21
  Speaker 1: to deal with stomas and I presume stoma bags and
• 28:24
  Speaker 1: all of that stuff.
• 28:26
  Speaker 2: All of that.
• 28:27
  Speaker 3: And even just like the manual disinfections and stuff like that,
• 28:31
  Speaker 3: like I was already doing that. So, you know, when
• 28:34
  Speaker 3: we were in that space of the unknown and they
• 28:38
  Speaker 3: had said we need to do some sort of digital stimulation,
• 28:41
  Speaker 3: I was like, actually, I have done this before with adults.
• 28:45
  Speaker 2: I actually know what I need to do.
• 28:47
  Speaker 3: And I think that kind of gave us a bit
• 28:49
  Speaker 3: of grace and, it probably hindered us in terms of
• 28:52
  Speaker 3: getting a diagnosis sooner because we were managing to empty
• 28:56
  Speaker 3: his bowels in some.
• 28:58
  Speaker 2: Way versus if we were first-timers and.
• 29:01
  Speaker 3: I didn't have that background, how would we.
• 29:04
  Speaker 2: Be getting this out as easy, you know? Yeah.
• 29:09
  Speaker 1: No, yeah, I guess how it can be a bit
• 29:11
  Speaker 1: of a double-edged sword in the sense that you knew
• 29:14
  Speaker 1: what you were doing, but then by helping, it was then....
• 29:20
  Speaker 2: Not looking as severe. Yeah.
• 29:23
  Speaker 1: Yeah. Whereas if you'd sort of left, it would have
• 29:25
  Speaker 1: looked more severe and they'd have probably done something a
• 29:27
  Speaker 1: lot sooner. But you say, I think diagnosis was that
• 29:31
  Speaker 1: around sort of eight weeks?
• 29:33
  Speaker 2: It was around eight weeks.
• 29:35
  Speaker 3: So I think we went in around the six week
• 29:37
  Speaker 3: mark um and by eight weeks we had our diagnosis.
• 29:43
  Speaker 1: Yeah yeah i mean that again that that is that
• 29:47
  Speaker 1: is a really long time to to wait for especially
• 29:51
  Speaker 1: long segment as well.
• 29:53
  Speaker 3: Yeah and we um and we look at back at
• 29:56
  Speaker 3: it now and we're like there were so many signs
• 29:59
  Speaker 3: So many signs that we probably should have pushed harder sooner.
• 30:06
  Speaker 3: But we just thought, oh, we'll just see. Hopefully he'll
• 30:09
  Speaker 3: start pooing soon.
• 30:11
  Speaker 2: And also, I guess we didn't really understand the disease.
• 30:13
  Speaker 3: We didn't know the disease then to know what severity
• 30:17
  Speaker 3: could happen if he wasn't.
• 30:21
  Speaker 2: Like wasn't able to stall, you know, we just assumed
• 30:25
  Speaker 2: we'd get it out eventually.
• 30:26
  Speaker 3: We never really thought about what the repercussions of him
• 30:29
  Speaker 3: not getting it.
• 30:29
  Speaker 2: Out would be.
• 30:31
  Speaker 1: Yeah, I guess that's probably similar for a lot of people.
• 30:35
  Speaker 1: They look back and go, oh, well, how did we
• 30:38
  Speaker 1: miss all of that? Well, you missed it because you
• 30:40
  Speaker 1: didn't know what it was. Yeah, absolutely.
• 30:42
  Speaker 3: Well, we even look at like when he was grunting
• 30:44
  Speaker 3: for that first 20 hours, to this day, that noise
• 30:48
  Speaker 3: he makes is, when he is trying to stool. He
• 30:52
  Speaker 3: still makes that noise now, and we look at it
• 30:54
  Speaker 3: all the time and think, that's what he was doing.
• 30:56
  Speaker 3: He was trying to pass his stool the whole time.
• 30:59
  Speaker 1: Yeah, yeah. But again, how would you know that? You know,
• 31:07
  Speaker 1: it becomes, yeah, of course, you know, people are going
• 31:11
  Speaker 1: to look back on stuff and go, yeah, well, how
• 31:14
  Speaker 1: did we miss this? And how did we miss that? Well, because...
• 31:17
  Speaker 1: I mean, you're massively in the thick of not just
• 31:21
  Speaker 1: having given birth, because that's the other thing with Hirschsprung.
• 31:24
  Speaker 1: It's because it's present so early on in most, if
• 31:31
  Speaker 1: not all, cases that I've seen. I have spoken to
• 31:36
  Speaker 1: people who've been diagnosed a lot later in life, but
• 31:40
  Speaker 1: in majority, high majority of cases, it's present from the
• 31:47
  Speaker 1: very beginning so you're going through everything that you go
• 31:53
  Speaker 1: through having just given birth so to then think well
• 31:58
  Speaker 1: i've also got to look out for signs for this
• 32:01
  Speaker 1: condition i've never heard of when you do you sort
• 32:04
  Speaker 1: of think like that you know well.
• 32:08
  Speaker 3: How did i miss these about like even making decisions
• 32:11
  Speaker 3: around like having the pull through surgery and things like
• 32:13
  Speaker 3: that um or what our options are prior to pull through,
• 32:17
  Speaker 3: you know, we're still in that brain fog of pregnancy
• 32:20
  Speaker 3: where we're sleep deprived and we're still trying to adapt and,
• 32:23
  Speaker 3: you know, and it was our third child. So, you know,
• 32:25
  Speaker 3: trying to fit the third child into the mix of
• 32:27
  Speaker 3: it all. Yeah, it definitely made it hard to kind
• 32:32
  Speaker 3: of make the right decisions. So we kind of just
• 32:35
  Speaker 3: had to trust in our surgical team and they had
• 32:38
  Speaker 3: a lot of experience. It wasn't their first time coming
• 32:41
  Speaker 3: across this case. We did have the option to move
• 32:44
  Speaker 3: to the children's hospital to have it done there. But
• 32:48
  Speaker 3: we'd grown to know this team well before that surgical.
• 32:53
  Speaker 3: So we'd already built a trust and they knew Arlo.
• 32:56
  Speaker 3: So we just felt comfortable to stay with where we
• 32:58
  Speaker 3: were at the time.
• 33:00
  Speaker 1: That's the thing. I think that's really important as well,
• 33:04
  Speaker 1: having that trust. And yeah, like you say, you could
• 33:07
  Speaker 1: have moved to a different hospital. But if that hospital...
• 33:12
  Speaker 1: knows your child they know what they you know they've
• 33:15
  Speaker 1: seen it before then i guess upheaval for the sake
• 33:19
  Speaker 1: of upheaval's sake is no no real point no well
• 33:25
  Speaker 1: i think there's another point you made as well about
• 33:28
  Speaker 1: um your older daughter when you talked about um having
• 33:33
  Speaker 1: her involved in the the sort of um medical side
• 33:38
  Speaker 1: as well because i think it can sometimes be a
• 33:42
  Speaker 1: bit tricky for siblings if especially because you now have
• 33:49
  Speaker 1: a child that needs a lot more attention um care
• 33:53
  Speaker 1: and suddenly there's all these medical equipment that they may
• 33:56
  Speaker 1: have never seen before why is that all in the
• 33:59
  Speaker 1: house now yes so.
• 34:02
  Speaker 2: Why are they nurses coming and going like yes there's yes.
• 34:05
  Speaker 1: Yeah i guess that can be really really confusing for
• 34:08
  Speaker 1: for siblings um so i guess having Making a decision
• 34:13
  Speaker 1: to have her involved, I think is, yeah, I guess
• 34:18
  Speaker 1: a really important one.
• 34:19
  Speaker 3: Yeah, it was definitely something we thought quite long and
• 34:22
  Speaker 3: hard about. But we just found like, what if I
• 34:26
  Speaker 3: fell ill? Dad works 12 hour days. So, you know,
• 34:30
  Speaker 3: we were in that stage where we were doing bowel
• 34:32
  Speaker 3: washouts every like six hours. So I really needed that assistance.
• 34:37
  Speaker 3: It's not something we, you know, and we have family
• 34:39
  Speaker 3: that had said they'll step in and they'll happily help.
• 34:42
  Speaker 3: It's much easier having the kid that's in the home
• 34:45
  Speaker 3: with us assist. And she's always been really interested in, like,
• 34:49
  Speaker 3: being the mother hen to the babies anyway.
• 34:53
  Speaker 2: So for her, it was actually no.
• 34:55
  Speaker 3: We realised when we were at the hospital doing a
• 34:58
  Speaker 3: bowel irrigation with her in the room with us, and
• 35:02
  Speaker 3: the dinner plate had come into the hospital room, and
• 35:06
  Speaker 3: she was like, well, there's a smell of poo everywhere.
• 35:10
  Speaker 2: It's disgusting. It's gross. And she's there saying, is.
• 35:12
  Speaker 3: Anyone going to eat that fish? And I turned to
• 35:16
  Speaker 3: my partner and I said, yep, she's going to be
• 35:18
  Speaker 3: the right person to help us. Like, you can just
• 35:20
  Speaker 3: tell it's nonchalant. It didn't bother her at.
• 35:23
  Speaker 1: All to, yeah. Well, I think they're going to have
• 35:28
  Speaker 1: a little.
• 35:28
  Speaker 3: Nurse or surgeon out of her. She's very much into
• 35:31
  Speaker 3: the whole medical side of things now. Amazing.
• 35:34
  Speaker 1: To eat at a time like that as well.
• 35:36
  Speaker 2: Yeah, I know, right? That's exactly what we said. As
• 35:39
  Speaker 2: soon as she said that, we were all looking at
• 35:41
  Speaker 2: the room like, She's the right person, yeah.
• 35:44
  Speaker 1: That's an important point, actually, I think. When the sort
• 35:49
  Speaker 1: of time comes and how you explain to older siblings
• 35:54
  Speaker 1: or possibly younger siblings, you know, what's going on, what
• 35:58
  Speaker 1: happens and why is there all this medical equipment around
• 36:01
  Speaker 1: and all of that stuff. I think, like you say,
• 36:06
  Speaker 1: important to take on board the child themselves and can
• 36:11
  Speaker 1: they comprehend, can they, because some children will go, oh, okay, cool.
• 36:18
  Speaker 1: And it won't bother them in the slightest. And some
• 36:20
  Speaker 1: will want to know absolutely everything. Exactly. Exactly.
• 36:24
  Speaker 2: Yeah. Yeah.
• 36:25
  Speaker 3: I think with our second child, if she was older
• 36:28
  Speaker 3: and we were using her, I think it'd be a
• 36:30
  Speaker 3: very different story because she's much more in, wants to
• 36:34
  Speaker 3: know more about it rather than just, I'm here to help.
• 36:39
  Speaker 1: Yeah, and I think that's, yeah, that's an important point
• 36:42
  Speaker 1: to make as well. And I also, just finally on that,
• 36:47
  Speaker 1: I don't think there's a right or wrong answer.
• 36:49
  Speaker 2: I don't think so either.
• 36:50
  Speaker 3: And I mean, it was always, we never made it
• 36:54
  Speaker 3: like a chore for her that she had to assist us.
• 36:57
  Speaker 3: It was always, would you be able to help today?
• 37:01
  Speaker 3: If she would say no, you know, we would call
• 37:03
  Speaker 3: on a family friend and we would work around it.
• 37:06
  Speaker 2: But....
• 37:09
  Speaker 3: We knew we needed her help and I think it
• 37:12
  Speaker 3: was probably the easiest way for her.
• 37:14
  Speaker 2: To adapt to what our new life looks like as well.
• 37:19
  Speaker 1: Yeah. Yeah, I guess if they can see it firsthand
• 37:22
  Speaker 1: and then it's not a mystery anymore.
• 37:26
  Speaker 2: Yeah, exactly.
• 37:28
  Speaker 1: Cool. Yeah. No, absolutely. So if we look at kind
• 37:34
  Speaker 1: of moving forward, I know you talked a little bit
• 37:38
  Speaker 1: about the stoma and how that's going to sort of
• 37:42
  Speaker 1: play out. And we talked about the Botox and the
• 37:46
  Speaker 1: five rounds and you just had one just very recently.
• 37:50
  Speaker 2: Yeah, we're at the peak phase of it at the moment.
• 37:54
  Speaker 3: So he's basically paralysed and it's just coming out, which
• 37:57
  Speaker 3: is great.
• 37:58
  Speaker 1: Well, at least he's coming out. That's the good thing.
• 38:02
  Speaker 2: Exactly. That's it.
• 38:04
  Speaker 1: But moving forward, what do you plan for or hope
• 38:09
  Speaker 1: is going to happen?
• 38:11
  Speaker 3: I mean, we hope that Arlo will go on to
• 38:13
  Speaker 3: live a relatively normal life. We know that we're still
• 38:18
  Speaker 3: going to battle some hurdles, but we're hoping, you know,
• 38:21
  Speaker 3: by the time he gets to the age five or six,
• 38:24
  Speaker 3: he'll have a bit more autonomously be able to make
• 38:27
  Speaker 3: those decisions for himself around what that care will look like,
• 38:31
  Speaker 3: you know, You know, we can also look at things
• 38:34
  Speaker 3: like pelvic floor therapy and things like that, but really
• 38:37
  Speaker 3: can't do any of that until they're a bit older
• 38:39
  Speaker 3: and they have a bit more understanding about how their
• 38:41
  Speaker 3: bodies work. And also, you know, we're really interested to
• 38:46
  Speaker 3: see what potty training is going to be like. We're
• 38:50
  Speaker 3: not rushing into that in any way at all, but
• 38:53
  Speaker 3: definitely know it's going to be a bit more of
• 38:55
  Speaker 3: a struggle than what it has been with our previous kids.
• 38:58
  Speaker 2: Yeah.
• 38:59
  Speaker 1: Yeah, I think it's, from people I've spoken to, I
• 39:02
  Speaker 1: think it definitely looks different.
• 39:06
  Speaker 2: Yes, from what we've heard, it's, yeah, it's a bit
• 39:08
  Speaker 2: of a battle.
• 39:10
  Speaker 1: I hope, obviously, that all goes sort of as smoothly
• 39:15
  Speaker 1: as it possibly can.
• 39:17
  Speaker 3: I mean, look, toilet training anyone is a tough challenge,
• 39:20
  Speaker 3: so we'll see what happens.
• 39:23
  Speaker 1: Absolutely, absolutely. Noah, thank you so much for doing this
• 39:27
  Speaker 1: this morning. I bet you. it's been really, really interesting
• 39:31
  Speaker 1: to hear Arlo's story. And I wish all of you,
• 39:36
  Speaker 1: Arlo and yourself and everybody included, all the very best
• 39:40
  Speaker 1: of luck for body trading and the very best of
• 39:44
  Speaker 1: luck for any procedures and anything. Yeah, moving forward. Thanks
• 39:48
  Speaker 1: so much for coming on.
• 39:50
  Speaker 2: Thank you so much for the time there, Tom.
• 39:56
  Speaker 1: Thank you for listening and being part of this growing community.
• 39:59
  Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
• 40:02
  Speaker 1: leave a review and share it with someone who might
• 40:04
  Speaker 1: need it. You can connect with us on social media
• 40:07
  Speaker 1: via Instagram, Facebook and TikTok under the name Tom's Hirschsprungs Podcast.
• 40:13
  Speaker 1: See you next week. Thank you.