Latest / Tom's Hirschsprung's Podcast / Episode 114 - With Charli Warriner

Transcript

Episode 114 - With Charli Warriner · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
• 0:12
  Speaker 1: just want to understand more, this podcast is for you.
• 0:15
  Speaker 1: Each episode, we will explore real stories and honest conversations
• 0:19
  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in. Hello, and welcome to episode one hundred and
• 0:48
  Speaker 1: fourteen of Tom's Hirshbrungs Podcast. I'm very glad to be
• 0:53
  Speaker 1: joined this morning by Charlie Warning. Charlie, thank you so
• 0:58
  Speaker 1: much for coming on. And we're going to talk through
• 1:02
  Speaker 1: Teddy's Hirshprungs, well his journey thus far. I guess we'll
• 1:08
  Speaker 1: kind of start where we usually do, sort of from
• 1:12
  Speaker 1: the beginning, if that's okay, Yeah.
• 1:14
  Speaker 2: Of course. Yeah.
• 1:17
  Speaker 3: Teddy's my second child, so no history of Hirshprung's in
• 1:21
  Speaker 3: our family at all. We've got a lot of girl
• 1:24
  Speaker 3: fere she's eight, so she was five when he was born,
• 1:29
  Speaker 3: relatively normal pregnancy. I think one thing that I've always
• 1:34
  Speaker 3: wondered is he had a lot of hiccups, like towards
• 1:36
  Speaker 3: the last kind of weeks and obviously doctor Google and
• 1:42
  Speaker 3: all that that you see and it's like, well, maybe
• 1:44
  Speaker 3: just check, you know, there might be a little bit
• 1:46
  Speaker 3: something going on.
• 1:47
  Speaker 2: But midwives and everything or really, you know, we're fine
• 1:50
  Speaker 2: and everything was fine.
• 1:53
  Speaker 3: Labor as normal as any labor, back and bitch, but yeah,
• 2:00
  Speaker 3: he came out fine. He did his first pooh, you know,
• 2:04
  Speaker 3: everything that you're expecting of a newborn baby. We were
• 2:07
  Speaker 3: signed off to go home and nothing kind of and
• 2:12
  Speaker 3: towards really the first couple of days, he quite a
• 2:15
  Speaker 3: mucusy baby, but it wasn't everything that we kind of hear,
• 2:20
  Speaker 3: you know from hersh brungs Reeli. It's like the green
• 2:22
  Speaker 3: you know, the bile wasn't like that. Initially it was
• 2:26
  Speaker 3: quite excessive. I think the first night hospital we had
• 2:29
  Speaker 3: to change his bed a few times.
• 2:30
  Speaker 2: Bread it was brown.
• 2:32
  Speaker 3: Obviously my second baby, so I knew there's a bit
• 2:34
  Speaker 3: of mucus that can come out of newborn babies and stuff.
• 2:37
  Speaker 2: But he did kind of drag on a little bit.
• 2:40
  Speaker 2: And then the only things really of note was quite
• 2:44
  Speaker 2: a sleepy baby. He was.
• 2:46
  Speaker 3: He didn't feed as much, you know, so there was
• 2:49
  Speaker 3: always felt like there was a little bit of pressure there.
• 2:51
  Speaker 2: He was breastfed, so it's always.
• 2:53
  Speaker 3: A bit like I think maybe our first, our daughter,
• 2:57
  Speaker 3: she had been like quite full on baby, and maybe
• 3:00
  Speaker 3: we just thought, oh maybe this is just quat colm,
• 3:02
  Speaker 3: but we've got a chilled baby, sleeps mot he you
• 3:06
  Speaker 3: know a little bit less. But then I think it
• 3:09
  Speaker 3: was on the sick day we he just hadn't eaten
• 3:14
  Speaker 3: for you know, for quite a while, and he taught
• 3:16
  Speaker 3: you know a certain amount of our certing amount of
• 3:18
  Speaker 3: window that was going to get concerned.
• 3:20
  Speaker 2: Went to our GP kind of checked him over.
• 3:23
  Speaker 3: He was like, he's presenting well, like the only concern
• 3:27
  Speaker 3: is that it's been a bit of time now since
• 3:29
  Speaker 3: he's eaten, and obviously he's so young.
• 3:32
  Speaker 2: So he sent this to our local.
• 3:34
  Speaker 3: Hospital and again they just kind of put a room
• 3:40
  Speaker 3: encouraging us to feed, and he just wasn't, you know, bothered.
• 3:43
  Speaker 2: At one point he did, you.
• 3:45
  Speaker 3: Know, cough up a little bit and I kind of
• 3:47
  Speaker 3: called it on the muslin and that was that kind
• 3:49
  Speaker 3: of bright green and I was a bit like, hmm,
• 3:52
  Speaker 3: that's you know, not not broad, but I was glad
• 3:55
  Speaker 3: I caught it, and I must keep you put sure.
• 3:57
  Speaker 2: The doctors.
• 4:01
  Speaker 3: Ultimately they kind of transferred us to kind of the
• 4:05
  Speaker 3: baby ward and they tried with an m G tube
• 4:10
  Speaker 3: with some expressed milk. It just it would kind of
• 4:14
  Speaker 3: get he would take a certain amount and then he
• 4:16
  Speaker 3: would just kind of vomit. Lots of doctors kind of
• 4:20
  Speaker 3: in and out that night he went to he went
• 4:22
  Speaker 3: for X rays, and then ultimately kind of early hours
• 4:25
  Speaker 3: of the morning, they said, we're not sure what's going
• 4:29
  Speaker 3: on there.
• 4:29
  Speaker 2: Seems to be I can't remember.
• 4:31
  Speaker 3: They sort look like a mass or a blockage or
• 4:34
  Speaker 3: something in the kind of bowel area. We're going to
• 4:38
  Speaker 3: talk to Older Hay, so our local kind of children
• 4:41
  Speaker 3: specialist hospital, and they essentially said they wanted to see him.
• 4:49
  Speaker 3: So a lot of bells kind of ring them because
• 4:54
  Speaker 3: Old Hay is a very special, very poorly children like,
• 4:58
  Speaker 3: why is our baby you know going I remember phoning
• 5:01
  Speaker 3: my husband and saying they want us to go to
• 5:05
  Speaker 3: Old Hay, and I just remember hearing him go, oh no,
• 5:08
  Speaker 3: like what's like, what's you know, what's wrong? So I
• 5:14
  Speaker 3: had to get a very special ambulance with the very special,
• 5:18
  Speaker 3: you know, kind of baby box to put him in.
• 5:20
  Speaker 3: And so I just remember kind of walking out that
• 5:24
  Speaker 3: hospital kind of following this ambulance crew just absolutely petrified,
• 5:28
  Speaker 3: you know, horrendous, and we got into the ambulance. My
• 5:34
  Speaker 3: husband kind of followed, and you know, it's a fairly
• 5:39
  Speaker 3: short drive, I don't know, about an hour to Old Hay.
• 5:42
  Speaker 2: And as we got out.
• 5:43
  Speaker 3: Of the doors, I noticed and flashed in the window
• 5:47
  Speaker 3: that their blue lights had been on the whole time
• 5:49
  Speaker 3: that I didn't realize from.
• 5:50
  Speaker 2: Being inside there.
• 5:51
  Speaker 3: And I think the gravity of everything kind of suddenly,
• 5:55
  Speaker 3: you know, hit me that Old Hay was a really
• 5:59
  Speaker 3: positive experience. We walked into the room. He was kind
• 6:01
  Speaker 3: of taking, you know, ahead of us, and as we
• 6:03
  Speaker 3: walked into the room, it was just like doctors, nurses
• 6:07
  Speaker 3: surrounded him and do you remember feeling that kind of
• 6:10
  Speaker 3: overwhelming feeling of we're safe here. You know, he's in
• 6:15
  Speaker 3: he's in a good place. And yeah, essentially they just
• 6:22
  Speaker 3: hooked him up to everything all that awful you know
• 6:26
  Speaker 3: pictures you can imagine them with babies or wires and
• 6:29
  Speaker 3: all sorts, and not being able to kind of touch him.
• 6:33
  Speaker 3: He had various things. He had a contrast X ray
• 6:35
  Speaker 3: to kind of look at the upper part of his
• 6:38
  Speaker 3: you know, insides. I suppose came back normal. They were like,
• 6:42
  Speaker 3: we think maybe he's just got an infection. We're going
• 6:45
  Speaker 3: to send you back to blankets to your local hospital.
• 6:49
  Speaker 3: And I was like, no, something wrong like this. Not
• 6:52
  Speaker 3: he wasn't feeding, he was just sleeping, and you know,
• 6:58
  Speaker 3: I was breastfeeding.
• 6:59
  Speaker 2: I wasn't sure whether it was that I was doing.
• 7:00
  Speaker 2: Am I poisoning him? You know? Am I eating something wrong?
• 7:03
  Speaker 2: Am I? Is he allergic to something?
• 7:05
  Speaker 3: And I was like, you know, it was important to
• 7:07
  Speaker 3: me to breastfeed, but I was like, give him a bottle,
• 7:09
  Speaker 3: give him like special milk, or do you know what
• 7:12
  Speaker 3: he needs to do, you know, to make him feel better.
• 7:15
  Speaker 3: I think there's one day when we just sat there.
• 7:18
  Speaker 3: I didn't get dressed, and I was on my pajamas
• 7:20
  Speaker 3: the whole time. I'm just staring at his bed because
• 7:22
  Speaker 3: he just wasn't you know, he wasn't doing anything.
• 7:24
  Speaker 2: It wasn't you know, waking up. I was expressed in milk.
• 7:30
  Speaker 3: And then they helped me to try and feed him
• 7:32
  Speaker 3: with the end tube and YouTube and kind of now
• 7:35
  Speaker 3: I remember holding it and kind of watching the milk
• 7:37
  Speaker 3: go down and then the milk would go back up,
• 7:39
  Speaker 3: and then thinking always taking a bit, and then just
• 7:42
  Speaker 3: vomited everywhere. And we had a really amazing nedionatal nurse
• 7:46
  Speaker 3: who really advocated for us. I was like, there's something wrong,
• 7:49
  Speaker 3: you know with the only reason we weren't sent back
• 7:50
  Speaker 3: straight away just because they couldn't find the right ambulance
• 7:52
  Speaker 3: to be able to transport him back safely, which kind
• 7:56
  Speaker 3: of caused a little bit of a delay. I was like,
• 7:58
  Speaker 3: we needed to stay here, like there's something they're not
• 8:01
  Speaker 3: They don't really like this got to be I don't
• 8:03
  Speaker 3: know there's mother's intuition or just pure fear, but I
• 8:06
  Speaker 3: was like, we need to they hear. And she really
• 8:10
  Speaker 3: advocated for us, and she came back and as a
• 8:12
  Speaker 3: nurse practitioner on and she was like, I've been racking
• 8:14
  Speaker 3: my brains all day. She's like, I don't I don't
• 8:17
  Speaker 3: know what it is. What I'm going to do is
• 8:18
  Speaker 3: going to have another X ray. And the different part
• 8:20
  Speaker 3: of his you know, to tell me mind is very small,
• 8:22
  Speaker 3: little chummy anyway, and the you know amazing hospital that
• 8:26
  Speaker 3: over he is, they wheeled this amazing X ray kind
• 8:30
  Speaker 3: of machine from nowhere that.
• 8:32
  Speaker 2: Kind of came over its bed.
• 8:33
  Speaker 3: It took an xtray and that's when they saw that
• 8:35
  Speaker 3: a lot of the issue was kind of lower down.
• 8:39
  Speaker 3: So they said, we're going to do a wash out,
• 8:41
  Speaker 3: you know, a little baby enema, just see what's going on.
• 8:44
  Speaker 3: And I remember feeling like, oh gosh, that's really invasive
• 8:47
  Speaker 3: on a tiny baby.
• 8:48
  Speaker 2: I didn't leave the room, but I, you know, my husband.
• 8:50
  Speaker 3: Kind of stood at the bed and I just kind
• 8:52
  Speaker 3: of was a little bit scared of it, I think,
• 8:55
  Speaker 3: and they were like, whoa explosive, like lots more maconia
• 9:00
  Speaker 3: came out, you know, a really kind of successful wash
• 9:05
  Speaker 3: out as we'd kind of come to become, you know,
• 9:09
  Speaker 3: aware of. And he was like a different baby alert
• 9:12
  Speaker 3: straight away ratherness just fed then non stop.
• 9:16
  Speaker 4: We're like he's fixed, like that was it just a
• 9:18
  Speaker 4: little bit of a blackage, Like it's fine, and so,
• 9:25
  Speaker 4: you know, we had a great night with him, and
• 9:27
  Speaker 4: then next day.
• 9:28
  Speaker 3: Expecting to be discharged like that was it, Like what
• 9:31
  Speaker 3: a worry over nothing? And they were like just because
• 9:35
  Speaker 3: of the wash out in it, and you know, we're
• 9:37
  Speaker 3: just gonna we think it's probably right we do a
• 9:39
  Speaker 3: rectal biopsy.
• 9:42
  Speaker 2: And the doctor said and I said okay.
• 9:45
  Speaker 3: And he was like it's to check for we were
• 9:48
  Speaker 3: looking for Herschbrung's disease and he goes and ninety nine
• 9:50
  Speaker 3: percent sure he doesn't have it. Well, he was like,
• 9:53
  Speaker 3: don't google it, and I was like okay. So it
• 9:56
  Speaker 3: just went over my head. And then I remember asking
• 9:58
  Speaker 3: the nurse as you left, what was that he said
• 10:01
  Speaker 3: they were looking for, and she says hirsh Sprungs disease.
• 10:03
  Speaker 3: But she says he's he doesn't think he's got it.
• 10:06
  Speaker 3: I don't worry about it, and so we were like okay. Anyway,
• 10:13
  Speaker 3: the next couple of days we couldn't leave because he'd
• 10:16
  Speaker 3: lost quite a lot of weight. They were looking for,
• 10:18
  Speaker 3: you know, a certain amount of weight gain. And in
• 10:21
  Speaker 3: the end they let us go before the results came back.
• 10:24
  Speaker 3: They said, if there's any issues, obviously.
• 10:25
  Speaker 2: Let us know. But we left the kid. Oh thank god.
• 10:29
  Speaker 3: Obviously we've got our five year old daughter at home
• 10:32
  Speaker 3: as well. He's just wondering why everybody suddenly left after
• 10:34
  Speaker 3: the newborn baby. So we got home that day and
• 10:42
  Speaker 3: the plastic stopped peering. We were like, hm, bit concerned.
• 10:48
  Speaker 3: Next day phoned Order Hay and they were.
• 10:52
  Speaker 2: Like, ohwas results come back. It's negative. He hasn't got it. Oh, brilliant.
• 10:55
  Speaker 3: They were like, you might just be a bit constipated,
• 10:57
  Speaker 3: do their bicycle legs and do a war on bath
• 11:00
  Speaker 3: and we were like okay. Later through the jay getting
• 11:04
  Speaker 3: a little bit more concerned, and then we got our
• 11:07
  Speaker 3: phone call from one of the consultants at the hospital
• 11:11
  Speaker 3: and they're like, how's Teddy doing? Like, well, he hasn't
• 11:13
  Speaker 3: pood but we have had his results. We know he's
• 11:15
  Speaker 3: not got hirshbrunks And they were like, uh, I don't
• 11:20
  Speaker 3: know what's happened.
• 11:20
  Speaker 2: They weren't Teddy's results.
• 11:21
  Speaker 3: They weren't Teddy's results, so they were like, we haven't
• 11:27
  Speaker 3: had his full results back yet, but the fact that
• 11:30
  Speaker 3: he hasn't pooded, they were like, we wanted you to
• 11:31
  Speaker 3: come back.
• 11:33
  Speaker 2: So we went back.
• 11:36
  Speaker 3: That just looked straight away left, you know, dropped my
• 11:38
  Speaker 3: daughter off of my dad and got there and it
• 11:41
  Speaker 3: was a very different conversation. It was like, we don't know,
• 11:45
  Speaker 3: you know, exactly the extent, but we think, yes, he
• 11:47
  Speaker 3: has got I can't remember the ins and outs, but
• 11:50
  Speaker 3: I think they take a certain measurement, don't they, And
• 11:52
  Speaker 3: say the initial measurement they couldn't find the cells or
• 11:56
  Speaker 3: mixed cells and that kind of started.
• 12:01
  Speaker 2: The journey.
• 12:02
  Speaker 3: Really, they told us kind of the next day they
• 12:06
  Speaker 3: had you know, had the full results back, and you know,
• 12:10
  Speaker 3: there was there was positive signs at that point because
• 12:12
  Speaker 3: he had been pooing by himself intermittently. You know, he
• 12:16
  Speaker 3: wasn't a typical kind of you know, no case, and
• 12:19
  Speaker 3: they suspected a short segment. But yeah, that was kind
• 12:24
  Speaker 3: of the confirmation. Really a bit of a roller coaster
• 12:27
  Speaker 3: to get there, and I suppose just a little bit
• 12:32
  Speaker 3: of relief to have, you know, an answer or to
• 12:36
  Speaker 3: have an understanding, a little bit of confusion initially, so Okay,
• 12:40
  Speaker 3: he's going to have the surgy, but then he'll be okay, well, no,
• 12:44
  Speaker 3: he'll always have it, and you know, I think it
• 12:47
  Speaker 3: takes a little bit to kind of get your head around.
• 12:50
  Speaker 2: But ultimately we were sent had home, you know, three.
• 12:54
  Speaker 3: Wash outs a day, come back if there's any issues,
• 12:57
  Speaker 3: and you know, we're really lucky he we did. You know,
• 13:02
  Speaker 3: the washouts awful for anybody that has to come home
• 13:04
  Speaker 3: and do that is you know, something that you would
• 13:07
  Speaker 3: never have to think that you'd have to do to
• 13:09
  Speaker 3: your child. You know, that's so tiny. And I remember
• 13:12
  Speaker 3: kind of the first couple with you know, really upsetting,
• 13:16
  Speaker 3: really traumatic. Used to dread them, but actually the weird
• 13:19
  Speaker 3: way we came to like, I don't think enjoying them
• 13:22
  Speaker 3: is the right word. I don't like like you'd be like, oh, yeah,
• 13:26
  Speaker 3: that's a good one, and we would just feel like, yeah,
• 13:28
  Speaker 3: we were doing such a kind of thing for him
• 13:30
  Speaker 3: and he'd always be so happy, and you know it
• 13:32
  Speaker 3: felt like, you know, we got very used to it,
• 13:38
  Speaker 3: and yeah, we did that right up until it's surgery.
• 13:40
  Speaker 3: Really it was two and a half months old when
• 13:44
  Speaker 3: he had that, so when they found out, yeah, it
• 13:46
  Speaker 3: was a short, short document in while they were while
• 13:49
  Speaker 3: he was in surgery.
• 13:51
  Speaker 1: Yeah, wow, that's I mean, even though it's not necessarily
• 13:56
  Speaker 1: a typical diagnosis, there are still parts of there that
• 14:02
  Speaker 1: I think anybody's had a child with hirshbruns would certainly recognize.
• 14:07
  Speaker 1: With the whole sort of yes, he did plue initially,
• 14:12
  Speaker 1: but then everything kind of stopped, and then there was
• 14:15
  Speaker 1: the sort of that I think the slow to feed
• 14:20
  Speaker 1: is always a massive, massive one. I know that that's
• 14:24
  Speaker 1: a big red flag for a lot of people. And
• 14:28
  Speaker 1: when you said, with the milk goes down the tube
• 14:31
  Speaker 1: and then comes back up and then goes, oh it
• 14:33
  Speaker 1: comes back up. I think that's sort of a classic one,
• 14:36
  Speaker 1: but really really interesting to hear as to possibly why
• 14:43
  Speaker 1: the hospital didn't think he had hirshruns, because again, it's
• 14:47
  Speaker 1: a specialist place for hirshbruns and so they've presumably heard
• 14:54
  Speaker 1: of it treated many many children with this condition, and
• 15:00
  Speaker 1: and yet still I think it's it's still kind of
• 15:03
  Speaker 1: presenting the classic symptoms. I think it's also interesting, you know,
• 15:10
  Speaker 1: whose results did you get, I mean, if it wasn't
• 15:15
  Speaker 1: Teddy's results, and whose results were you being told?
• 15:19
  Speaker 3: I know, I know, and you know, we don't harbor
• 15:23
  Speaker 3: any kind of resentment, although he is an amazing place
• 15:24
  Speaker 3: and we had an amazing care of that, but yeah,
• 15:26
  Speaker 3: it was it was a bit of a shock to
• 15:29
  Speaker 3: be thought, oh no, and we didn't know much about
• 15:32
  Speaker 3: it at the time that I could have been quite
• 15:33
  Speaker 3: devastating to be like, oh my god, like it's not
• 15:36
  Speaker 3: that and actually, but they weren't your results. But I think,
• 15:40
  Speaker 3: you know, the nansal unit that we were on, I'm
• 15:42
  Speaker 3: sure it had like maybe five beds or six beds,
• 15:45
  Speaker 3: and there must have been another child undergoing very similar
• 15:49
  Speaker 3: you know, kind of investigations.
• 15:51
  Speaker 2: He clearly doesn't have because we got those sponsive results.
• 15:59
  Speaker 2: But yeah, it was.
• 16:02
  Speaker 3: I think that initially, not know much about it, it
• 16:05
  Speaker 3: was more of a relief when we found out he
• 16:07
  Speaker 3: had it, because it just, you know, there's lots of
• 16:10
  Speaker 3: awful things that it could have been at the time,
• 16:12
  Speaker 3: you know, when we were told there was masses and
• 16:14
  Speaker 3: shadows and all sorts, you know, in that area. But
• 16:20
  Speaker 3: I suppose, yeah, we just didn't know what that journey
• 16:22
  Speaker 3: was going to look like.
• 16:23
  Speaker 2: I suppose no.
• 16:24
  Speaker 1: And when because again I've heard this before as well,
• 16:27
  Speaker 1: when they say don't google Hirshprungs, don't you know, don't
• 16:31
  Speaker 1: search it, don't whatever. Did you take their advice and
• 16:35
  Speaker 1: not google it? Or did you google it?
• 16:37
  Speaker 2: It was pretty hard to spell it in the birthplace.
• 16:39
  Speaker 2: I was like, what hat like? What it's kind of google?
• 16:45
  Speaker 2: But I think we did.
• 16:47
  Speaker 3: Initially I was a bit like, I don't know, I
• 16:51
  Speaker 3: just kind of closed off a little bit. I was
• 16:53
  Speaker 3: a little bit scared what I might find. Very briefly
• 16:56
  Speaker 3: looked at it when they mentioned it. But we you know,
• 16:59
  Speaker 3: I think as many pirates probably start off initially before
• 17:03
  Speaker 3: you realize that you have to become you know, medical
• 17:05
  Speaker 3: yourself really and kind of advocate a bit more for
• 17:07
  Speaker 3: your child, and the doctors don't always know better than you. Initially,
• 17:11
  Speaker 3: certainly we felt that, you know, we could just kind
• 17:14
  Speaker 3: of believed everything they said and just thought not that
• 17:17
  Speaker 3: they were hoously, you know, they were going off what
• 17:20
  Speaker 3: they thought at the time. But what when I did
• 17:24
  Speaker 3: look into it very briefly, I think you always see
• 17:27
  Speaker 3: the worst case scenario and the horror stories, and yeah,
• 17:33
  Speaker 3: I wasn't sure whether he would eat normally, you know,
• 17:35
  Speaker 3: whether he would you know, what I would look like,
• 17:39
  Speaker 3: would he have a you know, stonema or you know,
• 17:42
  Speaker 3: colostomy or whatever kind of his future looked like.
• 17:45
  Speaker 2: It wasn't very clear.
• 17:47
  Speaker 3: I think that, you know, there is a big spectrum,
• 17:50
  Speaker 3: as we've like said before, in terms of the disease.
• 17:53
  Speaker 3: I think that's something that we found straight away was
• 17:55
  Speaker 3: a bit like go away and see how you get on,
• 17:59
  Speaker 3: and if you come across problems, then we can help.
• 18:01
  Speaker 3: We've got nutritionists and we've got doctors, we've got gastro
• 18:04
  Speaker 3: and all this kind of stuff. Whereas you know, he
• 18:08
  Speaker 3: had his pull through surgery. It was short segment. He
• 18:11
  Speaker 3: was doing really well and we got sent home told
• 18:16
  Speaker 3: about Antie colitis and we were abouit. Like when we left,
• 18:20
  Speaker 3: we asked the doctor, same doctor actually who told us
• 18:22
  Speaker 3: he didn't think it was Hirshprung's and we said, you know.
• 18:25
  Speaker 2: What's what to look out for?
• 18:27
  Speaker 3: French colitis and was like, we were like, don't really fact,
• 18:31
  Speaker 3: don't worry about it. We were like, oh, okay, we
• 18:33
  Speaker 3: thought it was like a given that he would probably
• 18:35
  Speaker 3: get it, you know. Multiple times he was like, no,
• 18:38
  Speaker 3: that was quite rare, you know, just if he ever
• 18:40
  Speaker 3: everybody's different, because you're like, well, what to look for?
• 18:43
  Speaker 3: Should he go X amount of times a day? Should
• 18:46
  Speaker 3: it look like this? Looks like everybody's different, you know,
• 18:50
  Speaker 3: like just just see how you get on. And we
• 18:52
  Speaker 3: were kind of sent home post pull through. Don't have
• 18:55
  Speaker 3: to do washouts anymore, don't have to do this anymore.
• 18:58
  Speaker 3: See how you get on, And it was it was
• 19:01
  Speaker 3: a bit rocky at that point. He would get very
• 19:06
  Speaker 3: distended and even though he was, you know, going to
• 19:11
  Speaker 3: the toilet, but I've got real apper whole albums on
• 19:14
  Speaker 3: my phone of like various points of you know, his
• 19:17
  Speaker 3: tummy and it looked like this, and it looked like that.
• 19:21
  Speaker 3: We ended up in hospital twice, going back once because
• 19:25
  Speaker 3: he started vomiting again, but it was clear he was
• 19:28
  Speaker 3: just back, he was just backed up. It wasn't he
• 19:30
  Speaker 3: was a poorly he wasn't presenting as soon as they
• 19:33
  Speaker 3: did a wash out in hospital again find eating not
• 19:35
  Speaker 3: being sick again. And the second time we went back
• 19:38
  Speaker 3: with his distension, a nurse said he'd doing dilations and
• 19:43
  Speaker 3: we were like, what, what, what's the dilation? You might
• 19:46
  Speaker 3: like no, And she taught us to do the kind
• 19:50
  Speaker 3: of you know, the dilations to help kind of relieve
• 19:53
  Speaker 3: anything else, if there's anything, you know, kind of building up.
• 19:56
  Speaker 3: And that was a game changer for us. You know,
• 19:58
  Speaker 3: we would do that if you it was trying to
• 20:00
  Speaker 3: look bad, it would help him you know, pass wind
• 20:03
  Speaker 3: or or you know, go to the toilet maybe a
• 20:05
  Speaker 3: little bit.
• 20:06
  Speaker 2: And that kept us that hospital. We kind of weaned
• 20:09
  Speaker 2: him off that.
• 20:12
  Speaker 3: And touch would because he's only three, we've had you know,
• 20:17
  Speaker 3: relatively you know, easy ride of it compared to movist
• 20:22
  Speaker 3: people awful, traumatic, horrific. Probably still a little bit damaged
• 20:27
  Speaker 3: from that first you know, couple of months, six months,
• 20:30
  Speaker 3: three years certainly, but you know, I remember saying to
• 20:34
  Speaker 3: his consultant in the hospital. I just wish we could
• 20:38
  Speaker 3: like fast forward two years or something so I can
• 20:40
  Speaker 3: know what we're dealing with, like how he's going to fight,
• 20:43
  Speaker 3: you know, be he was like, don't wish his life
• 20:45
  Speaker 3: a where he was like, you, you know, we will
• 20:48
  Speaker 3: work it out, You'll be okay, and he and he
• 20:50
  Speaker 3: was right, you know we I think the bruh's just
• 20:55
  Speaker 3: the future and with it being so uncertain and not
• 20:57
  Speaker 3: really knowing what we might come up across with scary.
• 21:01
  Speaker 2: But actually you.
• 21:04
  Speaker 3: I think for any parents that are maybe new to
• 21:06
  Speaker 3: this or like younger than Teddy, you really it's so
• 21:10
  Speaker 3: scary in the beginning. You teach yourself though you've become
• 21:13
  Speaker 3: very aware. You know, you will learn what's normal for them,
• 21:18
  Speaker 3: what works for them, and how to.
• 21:21
  Speaker 2: You know, look after them. And it does get easier,
• 21:24
  Speaker 2: it really does.
• 21:27
  Speaker 3: But yeah, it's it's it was definitely scary, but I
• 21:31
  Speaker 3: feel like I can't always touch words.
• 21:34
  Speaker 2: We're in a we're in an okay phase.
• 21:36
  Speaker 3: But that's not so that we won't have issues, you know,
• 21:39
  Speaker 3: in the future, because as we know, it doesn't go
• 21:41
  Speaker 3: away post surgery.
• 21:44
  Speaker 1: Yeah, you're right, I mean everybody is different, which is
• 21:48
  Speaker 1: why it makes it so so difficult to say anything
• 21:53
  Speaker 1: with any definitive outcomes. Slightly we were talking about before
• 21:59
  Speaker 1: with things like Facebook groups and Instagram posts and whatnot.
• 22:04
  Speaker 1: And you see all manner of in inversive Comma's advice
• 22:08
  Speaker 1: about you should try this, eat this, don't eat this,
• 22:12
  Speaker 1: do this exercise, do this type of wash out, and
• 22:17
  Speaker 1: I think all of those are meant with the best
• 22:19
  Speaker 1: intentions or but everybody is different. So it's really and
• 22:27
  Speaker 1: that's why it's so difficult, because it's a lot of
• 22:29
  Speaker 1: trial and error. I presume a lot of finding out
• 22:34
  Speaker 1: what works for you, which I guess is the really
• 22:38
  Speaker 1: really difficult bit. And I'll sort of go back a
• 22:41
  Speaker 1: bit on what you said about parental instinct, and it's
• 22:46
  Speaker 1: not just the initial diagnosis. I mean, I know that
• 22:51
  Speaker 1: thankfully you trusted your instincts and you knew something was wrong,
• 22:57
  Speaker 1: and thankfully you know, got Teddy the dieagnosis he needed.
• 23:02
  Speaker 1: But then I guess you're also using the same instinct
• 23:06
  Speaker 1: for for everything else in terms of you know what
• 23:11
  Speaker 1: works what doesn't. Is that the case as well?
• 23:15
  Speaker 3: Yeah?
• 23:15
  Speaker 2: Absolutely, I think you know you just come to know them.
• 23:21
  Speaker 2: I think, as I say, we've been lucky.
• 23:23
  Speaker 3: There's not really anything that we've ever noticed in terms
• 23:25
  Speaker 3: of his diet or anything, you know, But when we
• 23:27
  Speaker 3: started weaning in from six months, you know, he'd been
• 23:31
  Speaker 3: exclusively breastfed.
• 23:34
  Speaker 2: You know, I'd undergone all sorts of things where the
• 23:36
  Speaker 2: ettlements of my diet. Can we try and remove some
• 23:38
  Speaker 2: of this gas.
• 23:39
  Speaker 3: You know, no dairy, no butty, and you know, all
• 23:41
  Speaker 3: sorts of things which didn't you know, let's make a difference.
• 23:46
  Speaker 3: But you know, from her six months on, that fear
• 23:50
  Speaker 3: of starting to introduce food, you know, and what would
• 23:54
  Speaker 3: kind of what does that look like because you know
• 23:57
  Speaker 3: we've been told about fodmap and and you know watch
• 24:01
  Speaker 3: brackier spedge maybe and you know they can't really process
• 24:06
  Speaker 3: anything in the skin all that kind of stuff, and
• 24:08
  Speaker 3: us a bit like, well, it's hard enough for a
• 24:10
  Speaker 3: anxious parent anyway that we just start like bringing food
• 24:14
  Speaker 3: into it. But even like, you know, does he have
• 24:17
  Speaker 3: a bit of formula or a bit of cow's milk
• 24:18
  Speaker 3: and what that looks like? And I think we just
• 24:20
  Speaker 3: had to take things, you know, little by little. We
• 24:26
  Speaker 3: were always really scared of, you know, certain illnesses and
• 24:30
  Speaker 3: you know, worried that he would be kind of poorly,
• 24:33
  Speaker 3: you know, quicker. But I think over time we've just realized, you, yeah,
• 24:42
  Speaker 3: you have to just take everything other comes and just
• 24:43
  Speaker 3: to see, you know, try it if that doesn't work
• 24:46
  Speaker 3: or if he's you know, particularly you know, doesn't take
• 24:47
  Speaker 3: that very well.
• 24:48
  Speaker 2: Because we would ask, you know what O probiotics and
• 24:52
  Speaker 2: we'd go a bit like.
• 24:54
  Speaker 3: Not really any evidence, you know, or you know, other
• 24:58
  Speaker 3: things that we would ask and you know, try and
• 25:00
  Speaker 3: get what should we be doing this?
• 25:02
  Speaker 2: And there was always a bit.
• 25:02
  Speaker 3: Like maybe try it if it works, been great, If
• 25:06
  Speaker 3: it does, haven't, then it doesn't you know, through like
• 25:10
  Speaker 3: you've had We've had to teach ourselves. I'm sure every
• 25:12
  Speaker 3: parent in that space. And to your point, there's such
• 25:15
  Speaker 3: a wide spectrum of you know cap in terms of
• 25:19
  Speaker 3: case by case, and each you know child is different.
• 25:23
  Speaker 3: So I think trust in your gut and especially kind
• 25:28
  Speaker 3: of have a supose with ween and we were just
• 25:29
  Speaker 3: really careful not to just introduce loads of things at once.
• 25:31
  Speaker 3: We could maybe figure out like that doesn't you know,
• 25:35
  Speaker 3: that doesn't work, or you know, maybe that that's caused
• 25:39
  Speaker 3: you know this. But yeah, over time and here is
• 25:45
  Speaker 3: you know three, he'll before this year We've just found
• 25:47
  Speaker 3: that you just there's nothing specific that doesn't work for him,
• 25:51
  Speaker 3: so you just have to treat him as a normal
• 25:53
  Speaker 3: you know where we've got an eight year olds, so
• 25:55
  Speaker 3: treat him as normal as possible, and.
• 25:58
  Speaker 2: You know, you know, and see how you get on.
• 26:00
  Speaker 3: Really and I think for us, we get to see
• 26:05
  Speaker 3: you know, somebody at all the day once a year
• 26:07
  Speaker 3: and then we just go they were home and they go.
• 26:09
  Speaker 2: Okay, yeah, it's fine. Fine. You know, we've been lucky
• 26:14
  Speaker 2: with him with potty training.
• 26:15
  Speaker 3: You know, he's potty trained really well, which we were
• 26:17
  Speaker 3: told you know, well, maybe a little bit of a
• 26:19
  Speaker 3: delay with you know, postage training. But yeah, I think
• 26:24
  Speaker 3: every child is different than I suppose. You've just got
• 26:26
  Speaker 3: to take your own journey, take the advice that comes,
• 26:29
  Speaker 3: and listen to people like yourselves and like Gugina doing
• 26:32
  Speaker 3: the website and the support that is there now it
• 26:35
  Speaker 3: wasn't really there when we came into this kind of space,
• 26:38
  Speaker 3: but you've got to everybody's got their own journey, right,
• 26:41
  Speaker 3: You've just got to kind of muddle through with a
• 26:43
  Speaker 3: bit of support here and there and see what works
• 26:46
  Speaker 3: best for your baby or for you or whoever's kind
• 26:49
  Speaker 3: of dealing with it.
• 26:50
  Speaker 1: Yeah, I think so, I think. And it's so it's
• 26:54
  Speaker 1: so difficult to give those sort of vague terms because
• 27:00
  Speaker 1: everybody wants and I think quite rightly, I think everybody
• 27:03
  Speaker 1: wants definitive everybody wants do this, don't do that, okay, cool,
• 27:10
  Speaker 1: And Hirshbrung's doesn't work that way and never never has done.
• 27:17
  Speaker 1: I mean, I again, I meet so many people with
• 27:20
  Speaker 1: so many different whether it be diets, whether it be symptoms,
• 27:28
  Speaker 1: in terms of you know this, doing this particular thing
• 27:32
  Speaker 1: doesn't work, but doing this does. It's interesting you say
• 27:35
  Speaker 1: about the probiotics as well, because that's something that I
• 27:39
  Speaker 1: was told many many years ago. That makes sure you have,
• 27:43
  Speaker 1: you know, things like YA cults and probiotic drinks and
• 27:48
  Speaker 1: this that the other, which again makes total sense because
• 27:52
  Speaker 1: there it's a good stomach bacteria or something. Yeah, so
• 28:01
  Speaker 1: again that would make sense to drink those. But it's interesting,
• 28:05
  Speaker 1: it would be really interesting to know, I think, how
• 28:07
  Speaker 1: much of an effect they have. I don't know if
• 28:10
  Speaker 1: there's any studies. I've got no idea how much of
• 28:12
  Speaker 1: an effect they have specifically on people with hirsh Brungs,
• 28:17
  Speaker 1: because I again, sounds reasonable that they would work, but
• 28:21
  Speaker 1: whether they actually do, I'm not sure.
• 28:24
  Speaker 3: I think there's a massive piece around got health, which
• 28:27
  Speaker 3: again is not really explored because people say, like you've
• 28:31
  Speaker 3: got is your second brain, right, and everyone else day
• 28:33
  Speaker 3: to day is like look after your gut like you say.
• 28:36
  Speaker 3: But we noticed with Teddy he had quite bad X
• 28:39
  Speaker 3: me as well when he was younger, kind of bad
• 28:41
  Speaker 3: skin which can be related to kind of gut health
• 28:43
  Speaker 3: and all that kind of stuff, which but you know,
• 28:45
  Speaker 3: it's not a family trait. You know, my daughter doesn't
• 28:47
  Speaker 3: have it and also is really sickly, you know, in
• 28:51
  Speaker 3: the first couple of years, which kids are when they
• 28:53
  Speaker 3: go to nursery. But we noticed that he would just
• 28:55
  Speaker 3: pick things up, you know how quicker, not necessarily have
• 28:59
  Speaker 3: them worse to be. And you know, we've just had
• 29:02
  Speaker 3: chicken pox in the house and he had it very
• 29:04
  Speaker 3: briefly over a couple of days, very minor, and then
• 29:07
  Speaker 3: my year old caught it and just had it, you know, horrendously.
• 29:10
  Speaker 3: So actually in terms of immunity not you know, he's
• 29:14
  Speaker 3: quite strong in ansense, but he would pick up everything
• 29:16
  Speaker 3: and I just be like, going to the doctor's like
• 29:18
  Speaker 3: is it his gut health? Like he's got he's got
• 29:20
  Speaker 3: a gut issue, must be there must be some connection.
• 29:23
  Speaker 2: They'd be a bit like, I don't know, don't you know?
• 29:27
  Speaker 3: So you I'd be standing the air in Holland and
• 29:29
  Speaker 3: Barrett looking at these child you know, pre biotics and
• 29:32
  Speaker 3: what's the difference between a probiotic and a probiotic and
• 29:35
  Speaker 3: you know, trying all these things, and it was a
• 29:37
  Speaker 3: bit like, well, we haven't. Nobody's really loved it to
• 29:40
  Speaker 3: your point, you know, there's no research done, so try
• 29:44
  Speaker 3: it if it works or great if it doesn't, then
• 29:47
  Speaker 3: you know else with anything, it's just like a trial
• 29:49
  Speaker 3: and error, isn't it, Like okay 'll try that?
• 29:52
  Speaker 2: Or what I have found with him, maybe it could
• 29:55
  Speaker 2: be coincidence.
• 29:56
  Speaker 3: Has just been really strong on the vitamins, just from
• 29:58
  Speaker 3: an immunity like perspective as any parents trying to get
• 30:01
  Speaker 3: vitamins in your child, but quite consistent, you know, with
• 30:04
  Speaker 3: with his vitamins and on the whole.
• 30:07
  Speaker 2: Yeah, he seems he's healthy and fit.
• 30:10
  Speaker 3: But I would be really interested, yeah, to see what
• 30:12
  Speaker 3: that kind of you know, if there is a positive
• 30:16
  Speaker 3: Because again on the Facebook groups, people have been advised.
• 30:18
  Speaker 2: From their medical professionals to try certain things.
• 30:21
  Speaker 3: So yeah, again, just like I suppose the scope of
• 30:27
  Speaker 3: the disease, the scope of the care or the kind
• 30:30
  Speaker 3: of advice and all the awareness is very different as well. Yeah,
• 30:35
  Speaker 3: which is why any kind of research projects or anything,
• 30:37
  Speaker 3: and I'm always like, yeah, like give us like, well,
• 30:40
  Speaker 3: let's let us put plowers to much information as possible
• 30:43
  Speaker 3: so we can start see, you know, seeing the findings
• 30:46
  Speaker 3: of things like that that make a difference.
• 30:49
  Speaker 1: Absolutely, And I think that's the interesting point you made
• 30:51
  Speaker 1: about gut health, and there's a lot of research done
• 30:57
  Speaker 1: between gut health and brain health, mental health, and I
• 31:03
  Speaker 1: think that's something that I've been really interested in these
• 31:07
  Speaker 1: sort of past couple of years. I mean, people I
• 31:10
  Speaker 1: talked to and how having potentially stomach issues or pain
• 31:16
  Speaker 1: within the stomach can really affect the brain. And there's
• 31:21
  Speaker 1: there's a lot of studies within that that show there's
• 31:25
  Speaker 1: a big link between the two, which I find fascinating.
• 31:32
  Speaker 1: So I think that's something that I think And again,
• 31:37
  Speaker 1: whether that's I'm not sure that's specifically hirshbrungs. That could
• 31:42
  Speaker 1: just be stomach issues, so it could be anybody with
• 31:46
  Speaker 1: ibd ibs, crones, whatever, they could potentially have sort of
• 31:53
  Speaker 1: that be susceptible as well to t more issues. But
• 31:59
  Speaker 1: I think that something that is really really interesting, and
• 32:04
  Speaker 1: I think as time goes on, we'll probably start to
• 32:07
  Speaker 1: hear a bit more on that kind of research. I think, Yeah, I.
• 32:13
  Speaker 3: Think that will you know, can make massive changes to
• 32:15
  Speaker 3: people's quality of life from stuff as well, can it?
• 32:17
  Speaker 3: If if that's you know, I think, yeah, there's a
• 32:21
  Speaker 3: massive key piece. It's like a missing part of the puzzle,
• 32:24
  Speaker 3: isn't it.
• 32:25
  Speaker 1: Yeah, Yeah, I think so, And I think it's it's
• 32:30
  Speaker 1: a tricky one. It's a really tricky one because it's
• 32:33
  Speaker 1: one of those things where you know, if like like
• 32:36
  Speaker 1: you were talking about with hirshbrung symptoms, either via an
• 32:41
  Speaker 1: X ray or just by looking at someone, you can
• 32:45
  Speaker 1: see hirshprung symptoms like you talked about the distended stubbock,
• 32:50
  Speaker 1: or if you do an X ray and you can
• 32:52
  Speaker 1: see that there's a blockage, you can see that there's
• 32:53
  Speaker 1: something there's a physical issue, whereas the link between gut
• 32:59
  Speaker 1: hell off and brain health is a lot trickier because
• 33:02
  Speaker 1: you can't necessarily see it.
• 33:04
  Speaker 2: Absolutely.
• 33:06
  Speaker 1: I think that's possibly a big issue as well.
• 33:10
  Speaker 5: But I.
• 33:12
  Speaker 1: Also really like stories like this because, like you said,
• 33:18
  Speaker 1: trying to or wanting to fast forward the first couple
• 33:23
  Speaker 1: of years, I think is a really really common story
• 33:29
  Speaker 1: that I hear. And it's it's interesting because people talk
• 33:35
  Speaker 1: to me about hirshpringers and say, oh, it's a it's
• 33:37
  Speaker 1: a childhood condition, which it isn't.
• 33:42
  Speaker 2: It's it's you.
• 33:43
  Speaker 1: You will always have first brugs.
• 33:46
  Speaker 3: So hard to get your head around, right, Like I
• 33:48
  Speaker 3: can't understand it. First you have this surgery and you
• 33:51
  Speaker 3: take away that bad bet like it's gone, like I
• 33:54
  Speaker 3: don't forget it, Like it's really it's hard to get
• 33:57
  Speaker 3: your head around it.
• 33:58
  Speaker 1: Yeah, And I think but even again, even medical professionals
• 34:03
  Speaker 1: have said to pairs that I've talked to, oh, and
• 34:07
  Speaker 1: actually I was told this as well, that I had hirshprungs.
• 34:12
  Speaker 1: I don't have hirshprungs. And and that's what I'd said
• 34:16
  Speaker 1: again before doing this podcast, that's what I've said for years.
• 34:19
  Speaker 1: I was like, oh, I had hirshbrungs, and actually it's
• 34:22
  Speaker 1: like well, and it was as somebody I had on
• 34:26
  Speaker 1: who is a nurse, and she said, well, it didn't
• 34:29
  Speaker 1: grow back, so you've still got it. I was like
• 34:32
  Speaker 1: Oh yeah, of course it didn't actually didn't grow back.
• 34:36
  Speaker 1: So I think it's it's it's I think it's important
• 34:42
  Speaker 1: to know that you have it to a degree. I
• 34:45
  Speaker 1: mean in terms of I know Teddy's only three, but
• 34:48
  Speaker 1: what's his kind of understanding of his own condition?
• 34:55
  Speaker 2: Is there any really?
• 34:57
  Speaker 3: I think the only the only time it's really in
• 35:02
  Speaker 3: our day to day life. We are obsessed in this
• 35:05
  Speaker 3: house of hope, like you just are all the time.
• 35:07
  Speaker 3: And like between me and my husband, likes he could yet,
• 35:09
  Speaker 3: and you'd like, no, I haven't. I haven't cleaned one
• 35:11
  Speaker 3: the VUK. I'm like, no, okay, okay, and he'll never
• 35:15
  Speaker 3: really it'll have to We've got to the point now
• 35:17
  Speaker 3: where you can go a day like twenty four hours,
• 35:20
  Speaker 3: so we'd be like, okay, just he needs to go today,
• 35:23
  Speaker 3: like before we start to panic.
• 35:25
  Speaker 2: Does never happened that it's gone longer than twenty four hours?
• 35:27
  Speaker 3: Maybe you know, I'm sure if we've phoned old ahead
• 35:29
  Speaker 3: of like is he well just to wait, like he'd
• 35:33
  Speaker 3: be like, he'd be fine. So we're still, you know,
• 35:36
  Speaker 3: obsessed with that. And even you know, I say he's
• 35:38
  Speaker 3: potty trained, we still have to like keep the potty
• 35:41
  Speaker 3: around for us, you know, he goes to school in
• 35:43
  Speaker 3: the morning, he goes to a playgroup in the afternoon.
• 35:47
  Speaker 3: So for us we need to make sure he goes
• 35:49
  Speaker 3: in the morning for it to be you know, a
• 35:51
  Speaker 3: smooth day, shall we say, and make sure there's no
• 35:53
  Speaker 3: like no accident, no, no accident. Make sure And so
• 35:58
  Speaker 3: him having that in the morning to sit as a
• 36:00
  Speaker 3: you're thing to be like, you know, he probably when
• 36:02
  Speaker 3: we've removed it and stuff in the past, he doesn't
• 36:04
  Speaker 3: think about it. He won't necessarily go, oh, leave the
• 36:07
  Speaker 3: lounge where my breakfast is and the telliers and go
• 36:10
  Speaker 3: to the toilet, you know. And so in terms of
• 36:13
  Speaker 3: his day to day, there's there's nothing. He doesn't have
• 36:16
  Speaker 3: to have any kind of care plans or anything with school.
• 36:18
  Speaker 3: I still, you know, write it all on the forms
• 36:20
  Speaker 3: and then you usually feel like you have to give
• 36:22
  Speaker 3: like a war and piece of it's a bowl condition.
• 36:25
  Speaker 3: It may mean X y Z, things to watch out for,
• 36:29
  Speaker 3: things to tell us about, you know, that kind of thing.
• 36:32
  Speaker 2: But in terms of day to day, you know, no,
• 36:35
  Speaker 2: not really.
• 36:38
  Speaker 3: I do wonder what that would you know, at what
• 36:40
  Speaker 3: point we will have that kind of conversation with him
• 36:43
  Speaker 3: I think that, you know, I said to you kind
• 36:45
  Speaker 3: of in the prep for this. Our big focus now
• 36:49
  Speaker 3: is the genetics of it, because I want to be
• 36:53
  Speaker 3: I find my responsibility to his three So this is
• 36:58
  Speaker 3: like twenty five years and future ish maybe when he
• 37:02
  Speaker 3: if and when he decides to have a family, but
• 37:04
  Speaker 3: I want to be able to come with him with
• 37:06
  Speaker 3: everything of what that looks like for him, because that's
• 37:09
  Speaker 3: probably when it unless again no such would then maybe
• 37:13
  Speaker 3: dumbling blocks you know, in between them. But for me
• 37:17
  Speaker 3: at the minute, that's what what does that look like
• 37:20
  Speaker 3: for him and his future with you know, with procreation.
• 37:24
  Speaker 3: You know what I want him to be. I don't
• 37:26
  Speaker 3: want him to go, well, I don't know if I
• 37:29
  Speaker 3: and won't mean about having a baby, because I don't
• 37:30
  Speaker 3: know whether my baby would be really poorly and will
• 37:33
  Speaker 3: I pass something on or I want him to be
• 37:36
  Speaker 3: fully informed at that point that this is what that
• 37:40
  Speaker 3: will look like, and God science we hope will be
• 37:44
  Speaker 3: so our ahead in twenty five plus year's time or
• 37:47
  Speaker 3: whatever that looks like. But if it means that he
• 37:49
  Speaker 3: needs you know, at the minute, he's only going to
• 37:53
  Speaker 3: be able to have reps testing as you know everybody
• 37:56
  Speaker 3: can and he's we're kind of in the process of that.
• 37:58
  Speaker 3: So our local authority he has made has got in
• 38:04
  Speaker 3: touch and we've kind of sent the initial forms and stuff.
• 38:07
  Speaker 3: But you know, me and my husband when we were
• 38:09
  Speaker 3: talking about this today, you know, last night, we was saying, well,
• 38:12
  Speaker 3: you know, what does that look like actually when it
• 38:13
  Speaker 3: comes back, whether it says yes, you have got a
• 38:15
  Speaker 3: defective rec gene, okay, but what if you haven't. There's
• 38:19
  Speaker 3: other genes that could be at play. There's other reasons,
• 38:21
  Speaker 3: you know, So then when do we stop or or
• 38:24
  Speaker 3: what is kind of next for us? So for his
• 38:27
  Speaker 3: I think for his future really well, that's probably going
• 38:30
  Speaker 3: to be when he really gets an awareness of it,
• 38:32
  Speaker 3: you know, in terms of what does that mean, because yeah,
• 38:37
  Speaker 3: it's genetic.
• 38:38
  Speaker 2: We don't know where the genetics.
• 38:39
  Speaker 3: Have come from because as far as we're there's no
• 38:42
  Speaker 3: family history. And we had there's one of the questions
• 38:45
  Speaker 3: in the hospital, they said, have you got any other children?
• 38:47
  Speaker 3: And I said, yeah, I've got a daughter, and I've
• 38:49
  Speaker 3: got you've got an older child.
• 38:51
  Speaker 2: And he was like is it a girl? Ol boy?
• 38:52
  Speaker 2: And I was like girl And they were like, oh yes,
• 38:55
  Speaker 2: Rara and girls. And I was like, oh, but does
• 38:57
  Speaker 2: that mean she carries.
• 38:58
  Speaker 3: The gene or does it you know it Still there's
• 39:01
  Speaker 3: a bit of a kind of it doesn't really matter
• 39:04
  Speaker 3: if it came from me or my husband's like, like, doesn't matter.
• 39:07
  Speaker 3: We're not gonna have any children in that respect in
• 39:09
  Speaker 3: terms of you know, our families complete anyway.
• 39:12
  Speaker 2: But then for our children, what does you know, what
• 39:14
  Speaker 2: does that mean?
• 39:15
  Speaker 3: Because we've been lucky with Teddy so far, but we
• 39:18
  Speaker 3: want them to have a full eyes wide open when
• 39:21
  Speaker 3: they go into you know, the future what that looks
• 39:24
  Speaker 3: like for them.
• 39:25
  Speaker 1: Absolutely, and I think, I mean, I could talk about
• 39:28
  Speaker 1: genetics all day. I find it absolutely fascinating. And I
• 39:32
  Speaker 1: think the really difficult pit is that again, like we
• 39:36
  Speaker 1: said before, there's a lot of vague answers. There's no
• 39:40
  Speaker 1: clear Oh, it came from here, so therefore it's got
• 39:44
  Speaker 1: x amount of percentage to be passed on from here
• 39:46
  Speaker 1: to here to here or whatever. But I mean, again,
• 39:51
  Speaker 1: talking to as many people I've had, I think I've
• 39:54
  Speaker 1: had every type of scenario where you know, people have
• 39:59
  Speaker 1: had more children and they haven't had the condition, Where
• 40:02
  Speaker 1: the parents had the condition but they haven't passed it
• 40:04
  Speaker 1: on to their children. Where where the girl has it
• 40:07
  Speaker 1: but the boy doesn't. Where the boy has it and
• 40:08
  Speaker 1: the girl doesn't.
• 40:09
  Speaker 5: I think it's it's every time somebody said to me, well,
• 40:15
  Speaker 5: it's passed through this and this will happen, I said, well,
• 40:17
  Speaker 5: actually I've got an example where that hasn't happened. So yeah,
• 40:21
  Speaker 5: it's actually, yeah, it is.
• 40:23
  Speaker 1: It just you know, it's it's it's so tricky, but
• 40:27
  Speaker 1: so any information that can be passed on or any
• 40:31
  Speaker 1: information that we can know definitively with genetics. And I
• 40:35
  Speaker 1: think the next decade will be really really interesting because
• 40:40
  Speaker 1: there's so much going on at the moment in terms
• 40:42
  Speaker 1: of reading, especially at older hay and I think again,
• 40:47
  Speaker 1: by the time Teddy's in his sort of teens, I
• 40:51
  Speaker 1: think be really really interesting to see where we are.
• 40:54
  Speaker 3: Yeah, that's exciting because I think that that just feels
• 40:59
  Speaker 3: like that next like duty like for him.
• 41:01
  Speaker 2: I don't want him to ever, you know, worry about it.
• 41:05
  Speaker 3: He's got you know, very tight little scars on his
• 41:08
  Speaker 3: tomin that maybe one day he might go, what's you know,
• 41:11
  Speaker 3: what's that? Or we'll talk and we'll say, you know,
• 41:13
  Speaker 3: when you're poorly or you know, when you're in hospital.
• 41:16
  Speaker 2: He's got no kind of recollection. You know.
• 41:21
  Speaker 3: My poor daughter has you know, at five, she was
• 41:23
  Speaker 3: kind of very aware of that, and we bought the book.
• 41:28
  Speaker 2: The I can't remember the name of it.
• 41:30
  Speaker 3: Now, there's a brilliant kid's book that I'm sure you'll
• 41:33
  Speaker 3: have seen that was made by a mum who his
• 41:39
  Speaker 3: little boy had hershbruns. And it's like a picture and
• 41:41
  Speaker 3: actually sometimes I use it. I've used it for like
• 41:43
  Speaker 3: playgroups to be like and it's children's book, but it
• 41:46
  Speaker 3: gives you a very just top line info of what
• 41:50
  Speaker 3: it is, what it could look like, you know, what
• 41:52
  Speaker 3: the issues are.
• 41:54
  Speaker 2: So we've got that and it's in.
• 41:55
  Speaker 3: His room and we've read it before, but I don't
• 41:56
  Speaker 3: think he's made that connection of oh I've.
• 41:59
  Speaker 2: Got that or you know.
• 42:03
  Speaker 3: So yeah, though I don't know what part that will
• 42:06
  Speaker 3: play in his future. Again, I hope, you know, not
• 42:08
  Speaker 3: a lot, just you know a bit of in the past.
• 42:12
  Speaker 3: But yeah, there's definitely when it comes to, you know,
• 42:16
  Speaker 3: family for him, I think that's going to what it
• 42:18
  Speaker 3: would be when if you knew that you had some
• 42:21
  Speaker 3: you would want to know what it looks like so
• 42:23
  Speaker 3: that you could prepare for it, you know, at least.
• 42:27
  Speaker 2: But yeah, so we'll see where that goes.
• 42:32
  Speaker 1: Absolutely, but no, thank you so so much for coming
• 42:36
  Speaker 1: on and sharing deadly story. And I think it's it's
• 42:40
  Speaker 1: really important to have these kind of positive stories as well,
• 42:45
  Speaker 1: where yes, obviously there was you know, very difficult at
• 42:47
  Speaker 1: the beginning, but it's great to hear that he's he's
• 42:50
  Speaker 1: doing so well and living essentially a normal yeah, as
• 42:56
  Speaker 1: normal as normal could be for two covers life. But
• 43:01
  Speaker 1: thank you, and obviously I wish you and your whole
• 43:04
  Speaker 1: family and Teddy all the very very best for the future.
• 43:09
  Speaker 2: Well, thank you and thank you to you again.
• 43:11
  Speaker 3: You know, people like you and me Gor Gina and
• 43:13
  Speaker 3: stuff that we've mentioned that massive make a massive difference
• 43:16
  Speaker 3: to new parents going through this, just having you know,
• 43:19
  Speaker 3: someone to talk to sometimes or just good resources or
• 43:24
  Speaker 3: you know, just a bit of scow because, as we
• 43:26
  Speaker 3: touched on, when we came into this journey not that
• 43:29
  Speaker 3: long ago, it was like hardly any info and you
• 43:32
  Speaker 3: kind of have to muddle through or you see the
• 43:34
  Speaker 3: worst case scenario and it's traumatic anyway. So yeah, thank
• 43:38
  Speaker 3: you for doing this because it's going to help so
• 43:40
  Speaker 3: much people, so many people.
• 43:42
  Speaker 1: Oh my pleasure. Thank you for listening and being part
• 43:48
  Speaker 1: of this growing community. If you have enjoyed the episode,
• 43:51
  Speaker 1: don't forget to subscribe, leave a review, and share it
• 43:54
  Speaker 1: with someone who might need it. You can connect with
• 43:57
  Speaker 1: us on social media via Instagram, book, and TikTok under
• 44:01
  Speaker 1: the name Tom's Hirsprung's Podcast. See you next week.