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Episode 125 - With Bekki · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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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
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Speaker 1: tuning in. Hello, and welcome to episode one hundred and
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Speaker 1: twenty five of Tom's Hirshbrungs Podcast. I'm delighted this morning
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Speaker 1: to be joined by Becky. Welcome Becky, Hi, thanks for
0:56
Speaker 1: having me. Thank you so much for coming on. And
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Speaker 1: we're hit to talk about your your son who's nearly three,
1:04
Speaker 1: am I.
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Speaker 2: Right, Yeah, it's free in June.
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Speaker 1: Oh nice, the happy birthday to him for dudes when
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Speaker 1: a little bit before this comes out. But yes, so
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Speaker 1: we hit to talk about his his Hirschbrung store obviously,
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Speaker 1: so I'll hand over hand over to you if you
1:23
Speaker 1: could let us know sort of from from the very beginning.
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Speaker 2: Yeah, so from the beginning. So Luca was born by
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Speaker 2: plans as air in section because he was preach. He
1:34
Speaker 2: had his first bottle of milk in recovery, and then
1:39
Speaker 2: he refused to feed again, so we wasn't sure what
1:43
Speaker 2: was going on. He was taken to NICKU because he
1:48
Speaker 2: had a low temperature as well. He was putting some
1:51
Speaker 2: antibatics because I had something called stratby that I was
1:55
Speaker 2: positive for, so they put him on antibiotics to precaution then,
2:02
Speaker 2: so we was fed by n G tube milk, but
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Speaker 2: he was just constantly sticking up. Then they found out
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Speaker 2: my daughter had a milk allergy, so then they put
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Speaker 2: him on allergy milk, which I did think it was
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Speaker 2: impossible for to have analogy to milk at twenty four
2:16
Speaker 2: hours old, but they said it was possible, so we
2:20
Speaker 2: went with that. He was still sticking it up. He
2:23
Speaker 2: wouldn't he still refused to feed. He wouldn't open his
2:26
Speaker 2: mouth for a dummy, He wouldn't open his mouth for
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Speaker 2: a bottle of milk. So we were just getting more
2:32
Speaker 2: and more concerned. He was. He did pass maconium, which
2:39
Speaker 2: I know is a big thing, and he was having
2:42
Speaker 2: the odd pooh on his chart, so he was having
2:47
Speaker 2: the odd one. But I know later on they said
2:49
Speaker 2: it's probably just been pushed out. It wasn't really an
2:53
Speaker 2: actual poo. So it got to day eight of him
3:00
Speaker 2: being in India natal that there was like, okay, we
3:02
Speaker 2: really need to figure out what's going on. Sent us
3:05
Speaker 2: for an X ray on his tummy and noticed something
3:09
Speaker 2: wasn't right, so they sent us to our local well,
3:12
Speaker 2: our nearest children's hospital because we wasn't in a children's
3:14
Speaker 2: hospital where we were just sit in our local hospital,
3:17
Speaker 2: so they sent us they called the ambulance, sent us
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Speaker 2: to our local surgical unit at Sheffield Children's Hospital, which
3:24
Speaker 2: were gray. They did a contrast scan for his energ
3:28
Speaker 2: to see what's going on with his tummy. They actually
3:32
Speaker 2: thought then they said he'd got my rotation in the
3:36
Speaker 2: bowl so it was all twisted. So then they practice
3:40
Speaker 2: for surgery for that, so we obviously everything was prepared
3:45
Speaker 2: for that and it was in the middle of the night.
3:48
Speaker 2: I remember it'd been late when he went down call
3:52
Speaker 2: it like half as ten and then about two o'clock
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Speaker 2: in the morning we got a called to say surgeon
3:58
Speaker 2: wants to speak to you. So then he said it
4:01
Speaker 2: wasn't my rotation, his bowels that blocked. It cushed all
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Speaker 2: everything to the side to make it look like his
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Speaker 2: bow was twisted, but it wasn't my rotation. We're not
4:14
Speaker 2: sure what it is. But he was actually a specialist
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Speaker 2: in hirshbungs, which I just find really really odd that
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Speaker 2: he was the surgeon on call that night and he
4:21
Speaker 2: was a specialist in hirshbungs. He said, I think he's
4:26
Speaker 2: got Hirshbung's disease. But because we need to take a
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Speaker 2: biopsy and it needs to get a straight to lab,
4:30
Speaker 2: it's two o'clock in the morning. We can't do that
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Speaker 2: right now. So I've put a stommer in because we
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Speaker 2: can't have it blocked up again until we know that
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Speaker 2: there's a cause. And this was literally two o'clock in
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Speaker 2: the morning, I think, and I've been woken up. Am
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Speaker 2: I in a nightmare? What is happening? Because what is happening?
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Speaker 2: Luke was still in theater at this time. I think
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Speaker 2: he was just in recovery that thought, this isn't real,
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Speaker 2: Like you sign all the forms for the surgery, you
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Speaker 2: see all the risks and all they like, what could happen?
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Speaker 2: You don't, I actually think it's going to happen, And
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Speaker 2: this actually happened. So we came up. Okay, he's back,
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Speaker 2: that's fine. We'll deal with the stonema, well what is
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Speaker 2: wrong with him? And then he got an infection. He
5:15
Speaker 2: got solulitis after his operations, so he was quite cooly
5:20
Speaker 2: with that as well. And then he was on what
5:26
Speaker 2: was it TPM is that when I think they feed
5:29
Speaker 2: it has had like a like a line in him
5:31
Speaker 2: and that was feeding him. That was for probably a
5:36
Speaker 2: good few days because we were told not to touch
5:39
Speaker 2: him just so his body could recover. So he's literally
5:43
Speaker 2: laid in the bed for three days. The nurses did
5:46
Speaker 2: whatever they did, and then the eventually gave us him
5:48
Speaker 2: to hold and the like they positioned them on us.
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Speaker 2: And as well, we were so cautious because he was
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Speaker 2: just so fragile. He just had the surgery. We didn't
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Speaker 2: want to do anything that might not anything or anything
6:00
Speaker 2: like that. And this this was also the point that
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Speaker 2: his sister came to meet him, because we're not actually
6:06
Speaker 2: introduced him yet. Because I had the old vision, I
6:09
Speaker 2: wanted him to meet at home the worst point. This
6:12
Speaker 2: wasn't gonna happen. So I remember she came and they
6:17
Speaker 2: were great with her, like it was she just kind
6:21
Speaker 2: of wait for him and she doesn't like three at
6:22
Speaker 2: the time, but then I think it was about five
6:28
Speaker 2: days later they tried him with a bottle of milk
6:30
Speaker 2: and we're like, there's no way he's going to take that.
6:32
Speaker 2: There's no way. And I think they started with like
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Speaker 2: a syringe actually I think it was like five miles
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Speaker 2: of milk and he had it. I was like, oh, okay,
6:41
Speaker 2: and then they built up, built up, built up, and
6:44
Speaker 2: then he had a bottle of milk. Was like whoa.
6:46
Speaker 2: And then Doc was like, yeah, he was probably feeling
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Speaker 2: that pool like he didn't want to actually drink some milk. Ooh,
6:53
Speaker 2: that's that. Obviously I didn't know. So I just felt
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Speaker 2: so bad for him that he he was just born
6:59
Speaker 2: and he felt poorly he couldn't even drink milk. Then
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Speaker 2: he started having a drummy, so all the normal stuff
7:05
Speaker 2: we would have a drummy then, which was great. So
7:08
Speaker 2: it took us. I think we was in Sheffield Children's
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Speaker 2: for about two and a half weeks with him understanding
7:15
Speaker 2: has to look after stoma, understanding like what we're going
7:22
Speaker 2: to have to do. And in between that tw and
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Speaker 2: they did the biopsy to confirmed me got hirschbrungs, which
7:29
Speaker 2: was obviously in one way, we was really happy to
7:32
Speaker 2: get a diagnosis and we could kind of work forward
7:35
Speaker 2: with that. Also, didn't know anybody that I got Hirschbrungs,
7:37
Speaker 2: so it was really it was kind of unknown, like
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Speaker 2: what is this? Everybody kept saying, what is it? Well,
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Speaker 2: I don't actually know nobody's I've never known anybody that's
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Speaker 2: had it, so yeah, it was kind of like the unknown,
7:52
Speaker 2: but you know what he's done so well. But the
7:57
Speaker 2: issue we had with his stona was he had such
8:00
Speaker 2: high output. Every time he was sick, we would be
8:04
Speaker 2: in hospital on fluids and it was just relentless because
8:09
Speaker 2: we had a winter and we must I think we
8:11
Speaker 2: spent the first third, like out the whole year first
8:15
Speaker 2: year his life I heard of that was spinning hospital
8:17
Speaker 2: because mainly going on for fluids. He was just and
8:21
Speaker 2: he can't he can never get a canular in him
8:24
Speaker 2: because he'd got no rains possible, like there was no
8:27
Speaker 2: rain on him that he could get a canyon, and
8:29
Speaker 2: so he used to have to go on his head.
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Speaker 2: And it was just awful to say, like it looked
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Speaker 2: worse than it was. I get that. It's just it's
8:35
Speaker 2: like a little baby. You don't want to see a
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Speaker 2: canular coming out his head. So I remember after his
8:42
Speaker 2: pull through, which he had at six months old, that
8:50
Speaker 2: was a very very long day we we And also
8:56
Speaker 2: it was on the twenty seventh of December, which so
9:00
Speaker 2: some day night I was taking my daughter to my
9:02
Speaker 2: parents and can you have her because we've got to
9:04
Speaker 2: be at a hospital for like seven half seven. But
9:08
Speaker 2: I was like, I just want the surgery, like we'll
9:11
Speaker 2: come on this day, that's fine. And I remember saying,
9:13
Speaker 2: you go be here all day, that's fine. We'll wait
9:15
Speaker 2: all day. And when we went down about nine half nine,
9:20
Speaker 2: by half five, he still wasn't back, and we was like, okay,
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Speaker 2: where is he? My husband had to go back and
9:28
Speaker 2: get our little girl because also we wanted to keep
9:29
Speaker 2: things consistent for her at home. She'd already had one
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Speaker 2: night away from us. The plan was he'd be there
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Speaker 2: for when he came out of theater, and then he'd
9:36
Speaker 2: go back and get our daughter and she'd have a
9:38
Speaker 2: night at home with him. And I think I got
9:41
Speaker 2: him from far. I think they among me to recovery
9:43
Speaker 2: at like seven half seven. It was so long that operation.
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Speaker 2: So the surgeon wrung me and said, I'm sorry, I
9:51
Speaker 2: can't wait to torch you. I just need to ringa
9:54
Speaker 2: because I need to go home. I've got them back
9:56
Speaker 2: in and that's absolutely fine. They said he'd got that
10:00
Speaker 2: much like scar tissue to work through. They spent a
10:03
Speaker 2: majority of time working through the scar tissue because all
10:06
Speaker 2: his bow was completely together, and they had to give
10:10
Speaker 2: him some fluid while they was operating on him. He's like,
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Speaker 2: he's gonna look really swollen. I was like, okay, and wow,
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Speaker 2: he looked. I didn't recognize him when I came out.
10:19
Speaker 2: I was like, is that him? And the only reason
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Speaker 2: man who was him? Because he's got the thing dummy in.
10:24
Speaker 2: I was like, are you sure that he's the only
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Speaker 2: child left in the theater? I was like, okay, it
10:29
Speaker 2: must be hit and it really doesn't look like him,
10:31
Speaker 2: And it was really like he took me back. That
10:33
Speaker 2: was the only person that'd seen him like that. I
10:35
Speaker 2: was like, are you sure? So yeah, he came out
10:39
Speaker 2: of theater like that. He was on high dependency because
10:41
Speaker 2: there was six months fond and had got an epidural
10:43
Speaker 2: in this point, and they said and they'd taken him
10:47
Speaker 2: out fifty cent a years of his bow, which then
10:49
Speaker 2: said he'd got a long segment but at the time
10:52
Speaker 2: he didn't know what he'd got. They actually thought he
10:55
Speaker 2: were gonna have short segment, but it was longer and
10:58
Speaker 2: he actually took more than they but he said it
11:02
Speaker 2: was really complex operation. I was like, okay, that's fine,
11:07
Speaker 2: and then we was in for a while. I think
11:09
Speaker 2: we was in for about eleven or twelve days after
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Speaker 2: his operation because he'd get better and then we'd get
11:17
Speaker 2: the green fluid up from his energy. You know, we
11:19
Speaker 2: have to aspirit and it's all green, so we'd have
11:22
Speaker 2: to stop feeding again or I could go back and
11:25
Speaker 2: then his canila came out, then would have to and
11:28
Speaker 2: then he'd be deadrated because he's not any fluid because
11:31
Speaker 2: it's we couldn't give him milk, so it was just
11:35
Speaker 2: constant cycle. But yeah, I think we came out the
11:39
Speaker 2: start of January, so we was in there a while.
11:42
Speaker 2: But as long as he got better, we didn't mind
11:43
Speaker 2: being in. And I celebrated New Year's Eve with the
11:46
Speaker 2: nurses on shift. Was very quiet for them, but yeah,
11:50
Speaker 2: we hadn't he remember, he was up all night that night,
11:55
Speaker 2: so we saw the New Year's in together, and then
12:00
Speaker 2: that was the January, and then it was the April
12:03
Speaker 2: that he had a stona reverse. He was nine months old,
12:09
Speaker 2: but during that period he'd had a couple of admissions
12:11
Speaker 2: as well, just for the idation, and I think it
12:13
Speaker 2: got to the point what the surgeon was like, I
12:16
Speaker 2: needed to get your emergency appointment to get this reverse
12:19
Speaker 2: because he'd been put on the peramide at this time
12:21
Speaker 2: as well to try and thicken his store. We also
12:25
Speaker 2: couldn't get a bag on him because his stona was
12:29
Speaker 2: right next to his belly button and because it was
12:32
Speaker 2: so high it was just like water. A bag wouldn't
12:34
Speaker 2: stick on his butt on his Tomay. So I used
12:38
Speaker 2: to have to put like paste and powder, like paste
12:41
Speaker 2: and powder around a stone and a nappy across him,
12:45
Speaker 2: which it would work because he wasn't moving. If he
12:48
Speaker 2: was walking, I don't think that would have worked because
12:51
Speaker 2: he didn't really move anywhere. And he was a really
12:54
Speaker 2: chunky baby as well, Like he didn't move Like I
12:57
Speaker 2: remember the nurse we used to see because I used
12:59
Speaker 2: to have to go between where we got discharged from
13:02
Speaker 2: berth and the pull throw used to go for a
13:04
Speaker 2: week for wash out, and she's like, this is the
13:07
Speaker 2: biggest ursons, babe I've ever seen. Like he was huge.
13:10
Speaker 2: He wouldn't even fit on the scales, so he couldn't
13:15
Speaker 2: move because he was so big. But obviously that's really
13:17
Speaker 2: good because she was preparing me to have to give
13:19
Speaker 2: him like some supplements help him like gain weight and stuff.
13:22
Speaker 2: It's like no danger there, he's big enough. So yeah,
13:28
Speaker 2: we couldn't get a bag on him, and his skin
13:29
Speaker 2: was also so around as he was. Surgeon was like,
13:31
Speaker 2: let's just get you in for a reversal as soon
13:33
Speaker 2: as possible. And ever since then he's done really well.
13:39
Speaker 2: We've had one admission for the idration and he got
13:43
Speaker 2: an urra virus which completely wiped him out. Because he's
13:50
Speaker 2: still got a really high output and he's on the
13:53
Speaker 2: paramide medication still, he has it twice a day, so
13:59
Speaker 2: he's bit different to a lot of Hirshpum's kids I
14:02
Speaker 2: know have like medication to help them go to the toilet.
14:05
Speaker 2: He needs to stop going so much. But ever since
14:10
Speaker 2: that reversal, he's only had one case of the ideration,
14:12
Speaker 2: which is amazing for us. I was able to go
14:15
Speaker 2: back to work because before I couldn't have gone. I
14:18
Speaker 2: mean he was a new baby anyway, But the thought
14:21
Speaker 2: of how was I ever going to go back to work.
14:23
Speaker 2: We're in hospital so much, but yeah, I'm I'm back.
14:27
Speaker 2: He's at nursery. He started back a nicty six weeks
14:30
Speaker 2: after reversal, which was great, which you know, when he
14:36
Speaker 2: was born, I was like, is he ever going to
14:38
Speaker 2: be able to go to nursery? Am I ever gonna
14:40
Speaker 2: gonna go back to work? But yeah, it was just
14:44
Speaker 2: since then that was our turning point. I think the
14:46
Speaker 2: reversal where I felt like things really improved for us,
14:50
Speaker 2: But I think that was just down to the high
14:52
Speaker 2: output and always been in hospital.
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Speaker 1: Yeah, it's definitely. I think I think that's a concern
14:59
Speaker 1: for every everybody when when you hear a condition that,
15:03
Speaker 1: like you said, you'd never heard before, nobody's ever heard
15:06
Speaker 1: of it before. Most people you talked to wouldn't have
15:11
Speaker 1: a clue even what part of the body Hirshbrungs would affect.
15:16
Speaker 1: And then there's the concern, you know, is he going
15:18
Speaker 1: to thrive like everybody else? Is he going to you know,
15:22
Speaker 1: is he going to be able to go to nursery,
15:23
Speaker 1: go to school? Is it you know this, that and the other.
15:26
Speaker 1: And obviously yes, everybody's journey is different, but there are
15:31
Speaker 1: so many circumstances, so many people I've interviewed and and
15:35
Speaker 1: who have hirshbrungs, and so many people I've interviewed, you
15:38
Speaker 1: children have hirshbrungs, who are thriving, who are doing really
15:42
Speaker 1: well where it. Yes, there are challenges, of course, like
15:46
Speaker 1: with any condition, but people are still able to you know,
15:52
Speaker 1: live very you know, comfortable lives and sort of beyond
15:58
Speaker 1: and go and achieve, you know, really great things, whether
16:01
Speaker 1: that be you know, people who were enacting or sport
16:04
Speaker 1: or whatever. So I mean, there is no reason in
16:09
Speaker 1: a lot of cases why hirshbruns should stop you from doing,
16:13
Speaker 1: you know, whatever you want to do. But if I
16:16
Speaker 1: take back just a bit to their initial diagnosis and
16:21
Speaker 1: they say the word hirshbruns sometimes I know there are
16:24
Speaker 1: some hospitals that have said, oh don't google it. Did
16:27
Speaker 1: they tell you not to or not?
16:32
Speaker 2: So I think because I was in accommodation there at
16:35
Speaker 2: the hospital, so I was there all the time. And
16:39
Speaker 2: I remember one time we've had a bit of setback
16:43
Speaker 2: with I think you'd had it started feeding then it
16:46
Speaker 2: are pretty green too it to stop. And I joined
16:49
Speaker 2: a Facebook group about Hirshbrungs and I was telling the
16:53
Speaker 2: doctor about is like, no, no, don't go on that.
16:58
Speaker 2: Why like at least these people know, and it's like
17:02
Speaker 2: you no, delete it. I was like, okay, well I didn't.
17:06
Speaker 1: Delete it, but of course nobody does. Everyone goes on
17:09
Speaker 1: it because you want to know more.
17:11
Speaker 2: That's it. I mean, if no, what I know now.
17:15
Speaker 2: I wish I'd taken it with people who used to
17:18
Speaker 2: post their worst days on there. And I think I
17:21
Speaker 2: was just seeing in the news feed of everybody's worst
17:23
Speaker 2: day and I thought that was going to be my
17:24
Speaker 2: entire life. I am still a member, and I'll be honest,
17:30
Speaker 2: I don't follow it anymore because for me, it just
17:34
Speaker 2: helps me because every time I went on my socials,
17:36
Speaker 2: i'd just see someone having a really bad day, which
17:39
Speaker 2: I really emphasized, but I really felt like it's brings
17:44
Speaker 2: me back to like I don't want that, like I'm
17:47
Speaker 2: trying to escape, like what's going on, Like I don't
17:49
Speaker 2: want to see that. But then we don't post someone
17:52
Speaker 2: might be having one bad day of the year, we
17:54
Speaker 2: don't post that all the other days. And I think
17:58
Speaker 2: I really didn't get that until now. Wow.
18:01
Speaker 1: Yeah, I think that's the thing. I think that's a
18:03
Speaker 1: social media thing just in general. You know, everything on
18:06
Speaker 1: social media is either the best thing ever or the
18:10
Speaker 1: worst thing. Nobody really posts, oh today I just had
18:14
Speaker 1: a normal day, and today I just did everything I
18:17
Speaker 1: normally do, you know, because it's not going to get
18:20
Speaker 1: the potentially get people to follow or like or whatever.
18:25
Speaker 1: And it's the same thing with Facebook groups. I see
18:27
Speaker 1: them obviously being doing what I do. I'm part of
18:30
Speaker 1: quite a lot of them, and I see yeah, various
18:35
Speaker 1: bits where some people post everything's great and everything's going
18:40
Speaker 1: really well and we've done this, but a lot of
18:42
Speaker 1: it is yeah, I've got this problem or this problem
18:46
Speaker 1: or that problem. And then I can see how when
18:50
Speaker 1: you come into having a new condition and seeing all
18:56
Speaker 1: of those things, you think, well, all of these things
18:58
Speaker 1: are going to happen other than just well, actually everybody's
19:02
Speaker 1: completely different. And it's i mean even different to the
19:08
Speaker 1: type of Hirschbrug's people have, whether it's show that short
19:11
Speaker 1: or long or whatever it might be. But yeah, I
19:14
Speaker 1: think there is a there is definitely a place for
19:18
Speaker 1: the groups, and I think there's definitely some some really
19:22
Speaker 1: good things on there. But it's like social media in general,
19:24
Speaker 1: there's a lot of really good stuff, but it takes
19:26
Speaker 1: quite a long time to find because you have to
19:28
Speaker 1: sift through all the other stuff first.
19:30
Speaker 2: I guess no that that that's it, and I mean,
19:35
Speaker 2: nobody would ever go on, I'm having a really good
19:37
Speaker 2: day today. But maybe we need some more of that
19:40
Speaker 2: so people know that it's normal.
19:42
Speaker 1: Yeah, I think, I think do the occasional story and
19:45
Speaker 1: post is just going, yeah, everything's going quite well today
19:48
Speaker 1: would actually be quite refreshing.
19:50
Speaker 2: Yeah, it really would. And seeing that if you just
19:53
Speaker 2: join that group would really help someone and understand that
19:57
Speaker 2: you will have good days, some little bigges bad. Yeah.
20:01
Speaker 1: Absolutely. He mentioned as well at the beginning about strip
20:08
Speaker 1: b Yeah, I'm not quite what is striped beef.
20:13
Speaker 2: Basically, it's something that I can have when pregnant man,
20:18
Speaker 2: but it can if it's not detected or treated, it
20:21
Speaker 2: can cause abnimalatism with babies. So they didn't know if
20:27
Speaker 2: that's why Luca was poorly when he was born. If
20:31
Speaker 2: it's not treated, it can be really serious. I know
20:36
Speaker 2: my friend's child it wasn't treated with her son because
20:40
Speaker 2: it's not routinely tested on the NHS. Mine did come
20:44
Speaker 2: up within one of my tests. I don't know which one.
20:47
Speaker 2: I don't know why it came up, but they did
20:49
Speaker 2: find it. But yeah, I think he's got several paus
20:51
Speaker 2: if from it, Like it's really serious. So that's why
20:54
Speaker 2: they really did put him on to botics just to
20:56
Speaker 2: see in case it was that. But and it wasn't that.
21:00
Speaker 1: It's good. It's one of those things. I guess if
21:04
Speaker 1: it can be quite serious, probably it should be tested
21:07
Speaker 1: a little bit more area.
21:08
Speaker 2: Yeah, I mean that. I think there's a lot of
21:11
Speaker 2: campaigns going around to get it tested. Yeah.
21:13
Speaker 1: Yeah, I mean I haven't I've heard of it, but
21:16
Speaker 1: I wasn't really aware as to what it was or
21:19
Speaker 1: what it potentially may cause. So thank you so much
21:22
Speaker 1: for explaining that, because yeah, I had no idea.
21:28
Speaker 2: Come and go in pregnancy as well. So if we
21:31
Speaker 2: test for it positive, are like twenty weeks pregnant by
21:34
Speaker 2: thirty six weeks, it could have gone so there's no
21:37
Speaker 2: way it kind of comes and goes. But I think
21:40
Speaker 2: if they detect it all why you're pregnant, they just
21:43
Speaker 2: assume you're still testing positive for it's cittery.
21:46
Speaker 1: For if yeah, yeah, best to be safe, I guess
21:49
Speaker 1: in that circumstance and then on the topic as well
21:54
Speaker 1: of again, I talked to a lot of parents who obviously,
21:58
Speaker 1: with hirsh Brung's surgery tends to happen. You're very early
22:04
Speaker 1: after birth, within you know, a few weeks or months
22:07
Speaker 1: or whatever, and obviously you have to sign the forms.
22:11
Speaker 1: As you said, He's that moment there where they say, right,
22:17
Speaker 1: I mean, please do surgery and please sign this form
22:19
Speaker 1: and whatever. I get so many parents who say, everything's
22:23
Speaker 1: just a complete blur at that stage, and you don't
22:26
Speaker 1: necessarily take all of it in.
22:27
Speaker 2: Will you.
22:28
Speaker 1: Did you manage to take most of it all in
22:31
Speaker 1: or was it a bit more of a blur?
22:34
Speaker 2: I think it was okay, book. I mean, while I
22:40
Speaker 2: was in surgery, I was researching math rotation because that's
22:44
Speaker 2: what because he was quite convinced he'd got this mal rotation.
22:49
Speaker 2: I remember I'm saying about the risks and stuff, but
22:52
Speaker 2: my husband was there a lot, so he was kind
22:55
Speaker 2: of doing. He signed all the forms and he would
22:59
Speaker 2: then say, like just would chatter about after just to
23:02
Speaker 2: make sure that we were clear with what's been said.
23:04
Speaker 2: But the systems were very clear, like, oh that's the
23:07
Speaker 2: nurse if I wasn't sure they'd just go over it
23:10
Speaker 2: with me. They were very good like that, like I
23:12
Speaker 2: knows would probably be with us. Well, there were signings
23:14
Speaker 2: so she could be with us and answer any questions
23:17
Speaker 2: as well. But I mean, it is a blow. I
23:20
Speaker 2: was like eight days postpartum having I've not really been
23:24
Speaker 2: home properly since having him. So, yeah, I suppose you
23:29
Speaker 2: are a bit all over the place.
23:31
Speaker 1: That's that's what I kind of I kind of thought.
23:33
Speaker 1: I can't I mean, I can't imagine how how people
23:39
Speaker 1: are able to think really clearly that that stage and
23:42
Speaker 1: sort of take everything in because I guess with hirsprungs
23:47
Speaker 1: as well, there's no warning signs pre birth no, so
23:53
Speaker 1: everything kind of hits you at once, and you have
23:56
Speaker 1: this condition that nobody's ever heard of, and then prepping
24:01
Speaker 1: for surgery and I guess in your case as well,
24:03
Speaker 1: where you you then told it may potentially be mal
24:06
Speaker 1: rotation and not hirshbrons it then yeah, everything can I
24:12
Speaker 1: guess feel like a complete whirlwind.
24:15
Speaker 2: Yeah. Yeah, And that's why when we got told it
24:18
Speaker 2: wasn't that That's what that's the point for me. I
24:21
Speaker 2: was like, what the hell?
24:22
Speaker 3: Yeah, is it real?
24:25
Speaker 2: Yeah?
24:25
Speaker 1: But was it then helpful to even though it wasn't
24:32
Speaker 1: now rotation, it was hirshbrongs. Was it helpful in a
24:35
Speaker 1: way to have that diagnosis confirmed?
24:39
Speaker 2: Yeah? I mean it took took him a few days
24:41
Speaker 2: to do the biopsy, and in that time we was
24:44
Speaker 2: just like in limbo. But I did just want to
24:48
Speaker 2: diagnose this. So once we got it, it was like a relief, like, Okay,
24:52
Speaker 2: we know what we're working with and because if not there,
24:56
Speaker 2: if it comes back in it's not we really don't
24:59
Speaker 2: know what it is. Like Yeah, and that's what I
25:02
Speaker 2: was worried about, like are we going to be here forever?
25:05
Speaker 2: I felt like at that time, I'm never going to
25:06
Speaker 2: get out of the hospital.
25:09
Speaker 1: Yeah I can. I can totally understand how that that
25:13
Speaker 1: feels at that time when you have, as like I said,
25:17
Speaker 1: the unknown condition then thinking of what's going on, but
25:22
Speaker 1: at least having that diagnosis, I guess then you can
25:24
Speaker 1: have a path to go, Okay, right, then we could
25:27
Speaker 1: have this option or that option, or you know, we
25:30
Speaker 1: can then have a stonma fitted and reversal or whatever
25:33
Speaker 1: it might be. I guess it then becomes a lot
25:35
Speaker 1: easier to see a bit more light at the end
25:38
Speaker 1: of the tunnel. I guess.
25:39
Speaker 2: Yeah, definitely that that diagnosis. That was a big turning point,
25:43
Speaker 2: just because we knew them always kind of dealing with
25:47
Speaker 2: and how we'd best manage that going forward.
25:50
Speaker 1: Yeah, And I know you mentioned as well when when
25:55
Speaker 1: you went back into nick you and you saw a
25:58
Speaker 1: lot of the sort of and G tubes and this,
26:03
Speaker 1: that and the other. I've known from well my own
26:07
Speaker 1: personal circumstance and from other people I've spoken to that
26:11
Speaker 1: when the nurse then gives you the baby to hold,
26:15
Speaker 1: was it almost like carrying a fabroge egg or was
26:18
Speaker 1: it just like, right, what am I going to do
26:21
Speaker 1: with this baby?
26:23
Speaker 2: Yeah, that's it, and that's why we didn't dare to
26:25
Speaker 2: hold him for his few days. But yeah, definitely he
26:31
Speaker 2: should change how the energies came to a normal part,
26:34
Speaker 2: Like it was weird to see him without one, Like
26:36
Speaker 2: when he pull it out, Oh that's his face. I'm
26:39
Speaker 2: not seeing his face properly because he's had an engine
26:42
Speaker 2: didnce he were like les than twenty four hours old.
26:45
Speaker 2: They also got my daughter was upseted with babies at
26:47
Speaker 2: the time. They got a little energine and put it
26:49
Speaker 2: on her little baby. So it was actually like and
26:53
Speaker 2: be guesse. She was like, why has he got that?
26:55
Speaker 2: It was like normal and she could see all these
26:57
Speaker 2: babies with them and as well. So that was a
26:58
Speaker 2: really nice touch from hostpit so just to kind of
27:01
Speaker 2: make it a bit more normal for her as well.
27:04
Speaker 1: Yeah, Oh, now that's really good because I guess it
27:06
Speaker 1: can be you know, it can be different, can't it.
27:10
Speaker 1: I guess it can be very different when you were
27:12
Speaker 1: expecting one thing and you know, something else happens, It
27:17
Speaker 1: can be very different. To say, to have that sort
27:19
Speaker 1: of normalizing I guess might be the right word normalizing
27:23
Speaker 1: eng tubes. Yeah, I think that's a really nice touch.
27:28
Speaker 1: That's fantastic. No, that's really good. So from so you
27:34
Speaker 1: said had three surgeries. Somens had three surgeries. When was
27:39
Speaker 1: the final surgery?
27:41
Speaker 2: He was nine months old, so it was two years ago.
27:46
Speaker 1: Yeah, and then since then, obviously you've had a few
27:50
Speaker 1: hospital stays with dehydration in this that the other.
27:53
Speaker 2: Yeah. I think he's had one hospital stay and that
27:57
Speaker 2: was over a year ago now, because I remember getting
28:01
Speaker 2: to the year part, like we've not been in free year,
28:04
Speaker 2: like this is massive. Well, I was on first name basis.
28:07
Speaker 2: We knew all the nurses on the ward, like I
28:09
Speaker 2: knew them all and that's it, like it's like sick
28:12
Speaker 2: a senior now, to be honest, it's like lovefully but
28:14
Speaker 2: I'm really sick of coming here. Yeah, but yeah, it's
28:19
Speaker 2: been over a year since this year was admitted for
28:21
Speaker 2: any film deadation. Yeah, it's been.
28:24
Speaker 1: Great, fantastic, And he said, obviously he's going to nursery
28:28
Speaker 1: now he's living, would you say, a kind of like
28:32
Speaker 1: fairly normal life.
28:35
Speaker 2: So he was trained at two and a half as well,
28:38
Speaker 2: which was a very big worry of man and my husband's,
28:41
Speaker 2: especially with how often he goes as well. We did
28:45
Speaker 2: have to increase his the paramide medication when he started
28:47
Speaker 2: toilet training, because he would he just go for a pool,
28:53
Speaker 2: like if with one lot of medication a day. It
28:56
Speaker 2: was like seven or eight times a day, but it
28:59
Speaker 2: was all very loose. Now he's about three or four,
29:02
Speaker 2: a bit more manageable, but just him being played at
29:05
Speaker 2: trained for us was a massive step. Yeah.
29:09
Speaker 1: Yeah, no, that's really really good because again it's it's
29:12
Speaker 1: kind of goes with the territory, doesn't it. With hirshprungs,
29:15
Speaker 1: you then kind of think, I guess it's another another
29:20
Speaker 1: point that kind of might go through parents' minds at
29:25
Speaker 1: that stage as well, where you're thinking, you know, are
29:28
Speaker 1: they going to go to nursery, are they going to
29:29
Speaker 1: do this? Are they're going to do that? And then
29:32
Speaker 1: they're going to be toilet training, they're going to be
29:33
Speaker 1: post training, you know, all of that stuff. Then I
29:36
Speaker 1: guess comes slightly secondary to that, and then you think, right,
29:40
Speaker 1: is this going to happen? Is this going to happen?
29:43
Speaker 1: But from what you've told me, did all since to
29:47
Speaker 1: go kind of you know really well, which is great
29:50
Speaker 1: and which is you know. Another part that I want
29:54
Speaker 1: on this podcast is having those kind of I guess
29:58
Speaker 1: you call them success stories, guess where people have obviously
30:05
Speaker 1: gone through a difficult time because you can't not do
30:07
Speaker 1: with hush bronks it. It's going to there are certain
30:10
Speaker 1: things that we all go through, but sort of coming
30:13
Speaker 1: out of the the other end of that with the
30:19
Speaker 1: occasional dehydration or the occasional issue here and there, is
30:25
Speaker 1: really really good to see. That's it's fantastic.
30:28
Speaker 2: Yeah, it's honestly, going back to when you were born,
30:33
Speaker 2: I wouldn't have thought it would be it would be
30:35
Speaker 2: like this. I mean, when he has a cold, we
30:39
Speaker 2: really know about it because he's Tommy would really play
30:42
Speaker 2: up before. So he'll have like a whole day loose
30:47
Speaker 2: on that, right, he's got a cold coming, and then
30:48
Speaker 2: they'll have a cold. And Tommy's really effective when he
30:51
Speaker 2: has a cold. But I mean I can manage that.
30:53
Speaker 2: That's fine, that's all I've got to deal with. I'm
30:57
Speaker 2: happy with that.
30:58
Speaker 1: Yeah, Yeah, I think that's a that's another interesting point
31:02
Speaker 1: you make as well. When when we have other illnesses
31:08
Speaker 1: on top. Sometimes, certainly with Hirschbrong's people, you can and
31:13
Speaker 1: I'd probably call it others instinct where you can where
31:17
Speaker 1: you can just kind of you can just tell that
31:21
Speaker 1: either something's about to happen or that something has just happened,
31:26
Speaker 1: where you know they're going to get a cold or
31:32
Speaker 1: some other cough or or whatever it might be. Would you,
31:35
Speaker 1: because I agree with that as well, definitely.
31:37
Speaker 2: And we got to a point of nursery that his
31:41
Speaker 2: stores would be so loose because he was getting a
31:43
Speaker 2: cold because it affects his Tommy first that they'd ring
31:46
Speaker 2: up send him home. So he's consult actually with my
31:49
Speaker 2: letter to say this is going to happen. He's not
31:53
Speaker 2: got a Tommy bog. He's got very frequently stores and
31:56
Speaker 2: when he's got cold, the first thing that's going to
31:58
Speaker 2: be affected is about So they are a bit more
32:01
Speaker 2: understanding now they've got that left from the consultant as well,
32:05
Speaker 2: which makes it easier for us. I mean, if it's poorly,
32:07
Speaker 2: I won't be sending him. But if he's just got
32:09
Speaker 2: a cold and he's absolutely fine, like I don't want
32:14
Speaker 2: him to be at home because he's fine. It's just
32:16
Speaker 2: he's got he's just a bit more frequent at the
32:18
Speaker 2: toilet because it's Tommy's upset because of it hasn't It's
32:23
Speaker 2: not like everybody else. He's only got half his large ball,
32:26
Speaker 2: so he's not going to be out to manage others.
32:30
Speaker 1: That is the thing that's I think again, it can
32:34
Speaker 1: be the similar with hirschbrungs as well, because there's no
32:38
Speaker 1: okay apart from possibly a stoma, there's not usually many
32:44
Speaker 1: signs that you can see just by looking at a
32:47
Speaker 1: person and saying, well, they have hirshbrung. So so sometimes
32:52
Speaker 1: it's you can look at us and say, well that
32:55
Speaker 1: person looks perfectly fine or he's perfectly fine. Then you know,
32:59
Speaker 1: if you were to lie ten people up and say
33:01
Speaker 1: spot the one who has Hirshbrungs, you couldn't. So it's
33:05
Speaker 1: it's really sometimes I think, not that we forget we
33:10
Speaker 1: have Hirshprungs, but it might be sometimes that we kind
33:14
Speaker 1: of think, oh, actually, I'm not feeling well, and it
33:18
Speaker 1: maybe is exacerbated's exacerbated by the fact that you know,
33:22
Speaker 1: some of us are missing portions of our colon, some
33:24
Speaker 1: of us are missing half of it, some of the
33:26
Speaker 1: missing all of it, you know, and it's I think, yeah,
33:30
Speaker 1: that but that's really good because then that kind of
33:33
Speaker 1: awareness of going okay, something might not be one hundred
33:37
Speaker 1: percent and it may be linked to the Hirshbrungs, I guess,
33:42
Speaker 1: is a really good way rather than just thinking, oh,
33:45
Speaker 1: you know, something else is wrong.
33:47
Speaker 2: I guess, yeah, definitely, it's definitely helped.
33:51
Speaker 1: But it's no I think, I think that's that's really
33:53
Speaker 1: really good, And then I guess kind of so towards
33:58
Speaker 1: the future, I know we've talked a little bit about
34:02
Speaker 1: how he's kind of getting on now and you haven't
34:04
Speaker 1: been hospital for a year, which is great news. So
34:07
Speaker 1: fingers crossed that that continues. As you said, he's kind
34:11
Speaker 1: of coming up, coming up around three now in terms
34:17
Speaker 1: of his future. Obviously, staying away from hospitals and everything
34:21
Speaker 1: would be would be marvelous, But what else do you
34:26
Speaker 1: want to see?
34:27
Speaker 3: I guess for him, I guess just that he doesn't
34:34
Speaker 3: feel different to any of his friends, that he.
34:39
Speaker 2: Doesn't question why something would be different, and if I
34:43
Speaker 2: can make that as normal as possible for him, and
34:45
Speaker 2: I will. He doesn't question. It's too young to question
34:49
Speaker 2: anything now. But I just want I don't want him
34:53
Speaker 2: to feel isolated or excluded from anything because of the Hirschings.
34:58
Speaker 2: And I do worry in the future because I do
35:02
Speaker 2: really monitor his diet, because I do find some food
35:05
Speaker 2: to really make like they just go straight through him.
35:08
Speaker 2: And I think really like artificial sweetness, anything like that
35:11
Speaker 2: doesn't agree with his Tommy. And so I'm just conscious
35:15
Speaker 2: in the future if his friends are having sweets and
35:17
Speaker 2: I'm like, you know, you know, I'm sweet, it's not
35:19
Speaker 2: because it's because it'll upset his Tommy. And I think
35:23
Speaker 2: that's going to be a challenge in the future with
35:27
Speaker 2: the diet situation and him feeling laughed at, and that's
35:31
Speaker 2: that is a bit of a worry for me.
35:34
Speaker 1: Yeah, yeah, I think. I think diets are really interesting
35:37
Speaker 1: one actually, because again it's one of those where everybody
35:44
Speaker 1: reacts a bit differently. I think, like normal, normal stomachs,
35:48
Speaker 1: normal people, but I think everybody kind of reacts differently.
35:53
Speaker 1: And from again, but not a doctor. It's not medical advice.
35:58
Speaker 1: But what I've seen with people try island error and
36:01
Speaker 1: they kind of go, Okay, well this this has worked today,
36:06
Speaker 1: and this hasn't worked today. And I think again, we
36:10
Speaker 1: see sometimes on these Facebook groups and people going well,
36:13
Speaker 1: don't ever have this or don't ever have that, And
36:15
Speaker 1: you think, well, not necessarily, because that might work for
36:18
Speaker 1: my child, but this, but alternatively, this might not work
36:23
Speaker 1: for my child. So it's yeah, that kind of I
36:27
Speaker 1: guess it's that it's that trial and error. I guess, yeah,
36:31
Speaker 1: it is.
36:31
Speaker 2: I know he could not have wheat to bix. That
36:33
Speaker 2: is a no go, like, he cannot have that. It's
36:38
Speaker 2: just it's too high in fiber for him. So it
36:43
Speaker 2: was funny. Actually, yes, it was a sharp and he
36:45
Speaker 2: saw some I want some weed to pick. Oh, no, protily,
36:48
Speaker 2: you can't have that because he used to have it
36:50
Speaker 2: nursery and we had to tell the nursery. I think
36:52
Speaker 2: they used made a comment one time it's like, all
36:54
Speaker 2: we can tell you he's had week to box then
36:55
Speaker 2: is in the nap is like please don't give him
36:58
Speaker 2: way to bix. Like that's fine. There's a certain foods
37:02
Speaker 2: that might be five for of us. But yeah, he
37:05
Speaker 2: definitely cannot have slip in like any like squash or
37:14
Speaker 2: fruit juice that is an og as well. Finding an
37:18
Speaker 2: alternative that is proving pretty difficult. I keep trying different ones,
37:24
Speaker 2: even just fruit though, like strawberries or raspberries that can
37:29
Speaker 2: go straight through him as well, but he really likes it. Apples,
37:33
Speaker 2: I throw all the peels off, all the skins off.
37:35
Speaker 2: I have to peel it all for him, but he
37:38
Speaker 2: really liked fruit. I don't want to discoverage him from
37:40
Speaker 2: having fruit. Yeah, but really, you know, if you'd be
37:43
Speaker 2: best on some ultra processed bread with like the most
37:47
Speaker 2: ultra processed butter and the most baide diet possible because
37:51
Speaker 2: it's the most processed, but I don't really want him
37:54
Speaker 2: having a diet like that. So it's just weighing that up,
37:57
Speaker 2: like it sucking, goes to the toilet so much. Not
38:00
Speaker 2: very healthy.
38:01
Speaker 1: Yeah, that's God, that's a really difficult dilemma, isn't it,
38:05
Speaker 1: Because you know, for a lot of parents, it's kind of, well,
38:09
Speaker 1: we want, I want a child to eat more vegetables,
38:12
Speaker 1: and if they like fruit, brilliant, fantastic. But then you
38:16
Speaker 1: almost kind of have to pull back as well. And
38:18
Speaker 1: that's that's tough because you're trying to do you know,
38:22
Speaker 1: one hundred is the right thing, but also because of
38:26
Speaker 1: what it has, it's kind of yeah, I see what
38:29
Speaker 1: you read about actually better doing this sort of ultra
38:32
Speaker 1: process this, that and the other. That wouldn't bro.
38:36
Speaker 2: There's no fiber in it. There's no nutrients in it.
38:41
Speaker 2: But I don't want him having that.
38:43
Speaker 1: No. But then, but then for other hirschbrongs people, they
38:47
Speaker 1: people have talked to as well, they need to increase
38:50
Speaker 1: the fiber. So then because I was told that when
38:54
Speaker 1: I was younger that I need to increase my fiber.
38:58
Speaker 1: But then I guess it depends on what hirsprungs you have.
39:02
Speaker 1: And again, and I don't know the ins and the
39:06
Speaker 1: outs of everything, But that's that's tough.
39:11
Speaker 2: Yeah, it's just shows, isn't it. Like Eve he's consulted
39:14
Speaker 2: when he first did the surgery. Oh, I think he'll
39:16
Speaker 2: be constipated, et cetera, where he's the opposite. Like even
39:19
Speaker 2: I remember him saying he really can't predict for Luca
39:23
Speaker 2: because he's like, everything I've told you is going to
39:25
Speaker 2: happen hasn't happened because everybody is so niche you can't
39:30
Speaker 2: predict how the body is going to react to something. Yeah.
39:33
Speaker 1: That that's the really tough thing with Hirshbrungs. And hopefully
39:37
Speaker 1: with a lot of the research that's going on in Canada,
39:40
Speaker 1: America and over here, hopefully, you know, maybe by the
39:44
Speaker 1: time lucas a teenager, will will know a little bit more.
39:51
Speaker 1: You know, maybe he might have found a cure. Who knows,
39:55
Speaker 1: But hopefully we will know a lot more about what
40:01
Speaker 1: sort of path to take and you know, what works
40:04
Speaker 1: here and what works there. But at the moment, it's
40:07
Speaker 1: it's still everything that I think I know. I now
40:12
Speaker 1: know somebody who is completely the opposite.
40:15
Speaker 2: So it's it's.
40:17
Speaker 1: Everybody who messages me and says or comments or whatever
40:21
Speaker 1: and says, oh, well you can't do this or you
40:23
Speaker 1: have to do that. I'll go, well, I've found this
40:26
Speaker 1: person and they do the opposite. Yeah, And it's it's
40:30
Speaker 1: just like, okay, so it's it is a tough one.
40:34
Speaker 1: It's definitely a tough one.
40:36
Speaker 2: Yeah, I know because I know some of my friends
40:41
Speaker 2: when they sat at toddo rtous condition, the first thing
40:43
Speaker 2: you see online is, oh, they might be constipated. So
40:46
Speaker 2: when I say always not it's online, I said, oh, yeah,
40:50
Speaker 2: but that's not that's not for everyone. That's probably like
40:54
Speaker 2: some cases. But so just get ingenough of people's understanding
40:58
Speaker 2: about as well thinks.
41:00
Speaker 1: So I think that's the thing if if one, if
41:01
Speaker 1: anybody takes anything away from this episode, it is just
41:05
Speaker 1: that everybody is different, and it's not to just trust
41:10
Speaker 1: the first thing you see on Google and go, well,
41:13
Speaker 1: that's what hirstprongs is, you know, so everyone's like that.
41:16
Speaker 1: It's just it's just not the case, is it.
41:19
Speaker 2: No? And I think as well, even I don't think
41:22
Speaker 2: if I kept going on that Facebook group seeing these
41:25
Speaker 2: negative messages, I'd even tried toilet training at two and
41:28
Speaker 2: a half because I don't think there's no way you'll
41:31
Speaker 2: be ready. But I did, only did it straight away,
41:34
Speaker 2: and I think that's really I feel like hopefully somebody
41:38
Speaker 2: will take that from this, because don't knock cry something
41:41
Speaker 2: because it's not worked for somebody else. I mean, we
41:45
Speaker 2: were really happy. Obviously it's toilet training, but I think
41:48
Speaker 2: at start off like, oh no, I won't have to
41:50
Speaker 2: try that till there's at least three and a half
41:52
Speaker 2: four years old. But yeah, if I'd listen to other people,
41:55
Speaker 2: I would have tried it.
41:57
Speaker 1: No, very very very true. And again, trusting your instincts
42:01
Speaker 1: on that as well, I think is huge. But no,
42:04
Speaker 1: but thank you so so much for coming on. It's
42:09
Speaker 1: been excellent to hear just how Luke is getting on
42:13
Speaker 1: and that he's doing really, really well, obviously after having
42:16
Speaker 1: an initial issues with Hirshprungs. No, thank you so much,
42:20
Speaker 1: and I wish obviously Lukey, yourself and the whole rest
42:24
Speaker 1: of the family all the very very best for the future.
42:26
Speaker 2: Oh, thank you. Thank you for having me on.
42:34
Speaker 1: Thank you for listening and being part of this growing community.
42:37
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
42:40
Speaker 1: leave a review and share it with someone who might
42:42
Speaker 1: need it. You can connect with us on social media
42:45
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
42:51
Speaker 1: See you next week.