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Episode 143 - With Bee · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirschsprungs disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
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 142 of Tom's
0:50
Speaker 1: Hirschsprung podcast. I'm delighted this evening to be joined by Bea. Bea,
0:54
Speaker 1: welcome to the podcast.
0:56
Speaker 2: Hi, thank you. Thank you for welcoming me.
0:58
Speaker 1: No, not at all. Thanks for coming on. Um, We're
1:01
Speaker 1: here to chat about your son and his journey, I guess,
1:06
Speaker 1: so far with Hirschsprungs. If you don't mind, would you
1:10
Speaker 1: like to take us back to, I guess, the beginning
1:13
Speaker 1: or wherever you'd like to start?
1:16
Speaker 2: Yeah. So my son was a complicated pregnancy from the start.
1:26
Speaker 2: I had a hemorrhage about 13 weeks with him. And
1:29
Speaker 2: we thought we'd lost him, and then he was fine.
1:31
Speaker 2: And then I had preeclampsia at the end. So I
1:34
Speaker 2: was in the hospital for quite a while with him.
1:38
Speaker 2: And so I never thought it would be easygoing, but
1:40
Speaker 2: I didn't really expect everything that ended up occurring. So
1:44
Speaker 2: I had him via C-section around a year ago, so
1:50
Speaker 2: in 2025, in the summer. And he came out, and
1:53
Speaker 2: he was the happiest little boy ever. And yeah, from there,
1:59
Speaker 2: I kind of started to notice that something was slightly off.
2:02
Speaker 2: He did pass his meconium. But I remember that my
2:07
Speaker 2: dad had come to visit me in the hospital and
2:09
Speaker 2: he was the one that had changed my son's nappy.
2:13
Speaker 2: And he said that he'd not seen anything like it.
2:16
Speaker 2: But I didn't put too much thought because you always hear, well,
2:20
Speaker 2: if they pass it in the first 48 hours... It's fine.
2:23
Speaker 2: He was a bit late. Like it was kind of
2:25
Speaker 2: like my really around the 48 hour mark because I
2:28
Speaker 2: remember thinking, oh, maybe I should ask someone about this.
2:30
Speaker 2: And then he he did. And yeah, I had a
2:33
Speaker 2: look at it and I just remember thinking, yeah, it
2:35
Speaker 2: does look a little bit different to my my first child. But,
2:39
Speaker 2: you know, it's not that different. There's not much to
2:42
Speaker 2: worry about. And then on about I want to say
2:45
Speaker 2: day three, he started throwing up very, very bright yellow,
2:50
Speaker 2: like I would say neon yellow. And I remember thinking
2:55
Speaker 2: that it was odd. And I called over a nurse
2:58
Speaker 2: to look at it and she said, oh, well, that's,
2:59
Speaker 2: you know, you're breastfeeding. It's probably just colostrum. And I
3:02
Speaker 2: remember thinking, it's not that colour. And it was staining.
3:07
Speaker 2: Like I had to get them to change the bed
3:09
Speaker 2: multiple times a day for him. And I kept saying,
3:12
Speaker 2: you know, I say I kept saying, I probably said
3:14
Speaker 2: about three times because I didn't like to be annoying.
3:16
Speaker 2: Like there's something going on here. You know, he's just
3:20
Speaker 2: being sick. and this color I've never seen before. Anyway,
3:25
Speaker 2: I kind of got a bit sidetracked because I was
3:27
Speaker 2: trying to get my blood pressure down. And so I
3:29
Speaker 2: was kind of like, I just want to get out
3:31
Speaker 2: of the hospital at this point. It's been three weeks
3:34
Speaker 2: since I've been in here. So we left. And I
3:36
Speaker 2: remember the night that we left, I had like enjoyed
3:40
Speaker 2: maybe two hours at home with my family. And he
3:44
Speaker 2: started acting really strange. Like he was throwing up like
3:48
Speaker 2: he usually was, but it was just so forceful that
3:51
Speaker 2: I thought like this, there's no way this is just claustrum.
3:54
Speaker 2: There's no way this is just reflux. So I went
3:56
Speaker 2: to the hospital and I spent a night in A
3:59
Speaker 2: & E because they did, they did look and they
4:01
Speaker 2: did think that there was something going on. But they thought,
4:05
Speaker 2: they said reflux again, but they said, we'll keep him
4:07
Speaker 2: overnight in one of those, you know, the A &
4:09
Speaker 2: E cubicles and you know, see how it is. And
4:13
Speaker 2: I remember in the morning they kind of said, yeah,
4:15
Speaker 2: it's just reflux. Because of course, as children do, during
4:18
Speaker 2: his time in the hospital that night, he didn't throw
4:21
Speaker 2: up at all. So they didn't get to see it.
4:23
Speaker 2: And he seemed completely fine. So I kind of felt
4:26
Speaker 2: very stupid. Like I'd brought him in and I'd wasted
4:29
Speaker 2: all this time I could have had at home with
4:31
Speaker 2: my family, my newborn. And yeah, just reflux. I called
4:35
Speaker 2: someone to come and pick me up. I remember feeling,
4:37
Speaker 2: I was apologizing like, oh, I'm so sorry because I
4:39
Speaker 2: made you drop me off and then pick him up.
4:41
Speaker 2: I felt so guilty. And then that day I needed
4:45
Speaker 2: to go to the midwife to have, I think he
4:49
Speaker 2: was seven days old. So it was the week checkup
4:52
Speaker 2: and he started throwing up there. And she took one
4:54
Speaker 2: look at it and said, I've been a midwife for
4:57
Speaker 2: quite a long time and I've never seen anything like
4:59
Speaker 2: that colour. And I'm a bit worried about it. And
5:03
Speaker 2: she called in one of her colleagues to see if
5:04
Speaker 2: they'd seen something. They said similarly that they'd been a
5:06
Speaker 2: midwife for a really long time and they're not trying
5:08
Speaker 2: to worry me, but they've never seen anything like that.
5:11
Speaker 2: And this whole time he had been pooing, but it
5:17
Speaker 2: was more like a smear on the back of the nappy.
5:19
Speaker 2: Like it looked as though you hadn't changed his nappy
5:23
Speaker 2: properly the last time and a tiny bit was left over.
5:25
Speaker 2: It didn't look like a proper poo. So I went
5:29
Speaker 2: to the hospital and on the way he threw up
5:33
Speaker 2: again and he breathed it back in. It was in
5:36
Speaker 2: his lungs and he was gasping and choking for air.
5:39
Speaker 2: And I just remember thinking, like, what is going on?
5:43
Speaker 2: You know, he was born and they did all the
5:46
Speaker 2: tests on him and he was fine. You know, what
5:47
Speaker 2: on earth could be going on? I had to pull
5:49
Speaker 2: him out of the car seat, which I was really nervous.
5:52
Speaker 2: I kept thinking, I'm going to get pulled over and
5:54
Speaker 2: I'm going to get arrested for child endangerment because I've
5:56
Speaker 2: got him out of his car seat. But my mum
5:58
Speaker 2: was in the front and she was driving me as
6:00
Speaker 2: quick as possible while obeying speed laws. And she was saying, look,
6:03
Speaker 2: no one's going to look at him and think that
6:06
Speaker 2: you're doing it for for bad reasons you're clearly trying
6:09
Speaker 2: to save his life so I was holding him up
6:10
Speaker 2: and he just it's like he couldn't clear it um
6:14
Speaker 2: and he was just he's struggling to breathe we finally
6:16
Speaker 2: got to the hospital and it felt like the longest
6:18
Speaker 2: ride even though I know from the time he started
6:20
Speaker 2: choking to when he got there it must have been
6:23
Speaker 2: about 15 10-15 minutes he was still breathing but it
6:25
Speaker 2: was very very fast and he was really struggling um
6:29
Speaker 2: and I went and I went to the ward that
6:32
Speaker 2: they told me to go to and it wasn't an
6:34
Speaker 2: A & E or anything um And someone heard his breathing.
6:38
Speaker 2: And she just sort of, I remember that she was
6:41
Speaker 2: really sensible. She came and snatched him off me. And
6:44
Speaker 2: she said, I'm going to press a button and there's
6:46
Speaker 2: going to be a lot of people in here. And
6:48
Speaker 2: I followed her into this room. And it was like,
6:51
Speaker 2: it was a small room about the size of like
6:52
Speaker 2: a bathroom at a cafe, you know, like an average.
6:56
Speaker 2: And suddenly there were like 20 people in there. And
6:59
Speaker 2: it was just me. My mum had come with me,
7:01
Speaker 2: but she'd been forced to leave the room because there
7:03
Speaker 2: wasn't enough room. And if I take you back to
7:09
Speaker 2: almost exactly a year to that date before, I'd had
7:13
Speaker 2: another child who was born sleeping at about 31 weeks.
7:18
Speaker 2: And it was about almost exactly a year on from
7:22
Speaker 2: their birthday that this was happening. And I turned to
7:25
Speaker 2: the doctor and I said, I've already lost a child. Like,
7:29
Speaker 2: please tell me I'm not going to lose this one.
7:32
Speaker 2: And he was the doctor was strapping my son down
7:35
Speaker 2: to the bed. and putting the suction mask over his face,
7:38
Speaker 2: and he said, you know, we're going to do everything
7:40
Speaker 2: we can, but I can't promise you. And I just
7:44
Speaker 2: remember they were suctioning him out, and they stabilized him
7:47
Speaker 2: as quick as possible, and got him down to the NICU.
7:50
Speaker 2: And it was just, looking at him, even though he
7:54
Speaker 2: was probably the biggest baby in there, because he was
7:56
Speaker 2: born at full term, I remember thinking he was so
8:01
Speaker 2: vulnerable and small. And Yeah, it's just really scary. He
8:07
Speaker 2: has an older sibling that was just suddenly left not
8:11
Speaker 2: knowing what was going on. You know, he'd had his
8:14
Speaker 2: brother home one day and then the next day his
8:16
Speaker 2: brother and his mum were gone and everyone was panicking. Luckily,
8:20
Speaker 2: my partner and the father of my children was able
8:24
Speaker 2: to kind of keep a stable environment for my oldest
8:28
Speaker 2: son so he didn't really know what was going on.
8:31
Speaker 2: He did come to visit my son my other son,
8:34
Speaker 2: a couple of times. But he was only in the
8:36
Speaker 2: NICU for two days before they started talking about sending
8:39
Speaker 2: him home because he hadn't been given anything to eat. So,
8:44
Speaker 2: of course, his symptoms had stopped. And they were like, well,
8:48
Speaker 2: they tried everything. They put little spikes in his head
8:51
Speaker 2: to see if he was having seizures. They did a
8:53
Speaker 2: lumbar puncture. They couldn't find anything wrong until they did
8:58
Speaker 2: a scan of his.
9:01
Speaker 2: Abdomen and they said that the loops I think they
9:04
Speaker 2: said the loops look dilated um and I googled that
9:08
Speaker 2: and at that point this big term came up Hirschsprung's
9:11
Speaker 2: disease and I'd seen it when I was googling I'm
9:15
Speaker 2: one of those like people that's a bit of a
9:17
Speaker 2: I'll have a contract when it comes to myself so
9:19
Speaker 2: when I saw this neon yellow vomit a few days
9:21
Speaker 2: before that I had been googling what could cause this
9:25
Speaker 2: and people were saying you know it could be Hirschsprung's
9:28
Speaker 2: disease it's unlikely it's very rare But someone sent a
9:32
Speaker 2: picture on a forum somewhere and it looked exactly the
9:35
Speaker 2: same as my son's. And I just remember thinking, I
9:39
Speaker 2: know this isn't in my head. They're talking about starting
9:42
Speaker 2: to reintroduce feeding. I just don't know. And when they
9:45
Speaker 2: saw this bowel, they ended up sending it over to
9:47
Speaker 2: the specialist at a much bigger hospital in Oxford. And
9:53
Speaker 2: I was just holding my breath while they were deciding
9:55
Speaker 2: whether they were going to transfer him there or not.
9:58
Speaker 2: And they finally said, yes, we're going to transfer.
10:00
Speaker 1: Him.
10:00
Speaker 2: And I was like, thank goodness. Even if there's nothing wrong,
10:03
Speaker 2: I just want to know that we've gone down every
10:05
Speaker 2: single avenue. And I did have this idea of hashbrowns
10:08
Speaker 2: disease in my head. And they did mention, have you
10:10
Speaker 2: got any history in my family? And I said, no,
10:12
Speaker 2: not that I'm aware of. We've got bowel issues in
10:15
Speaker 2: our family, but none of them related to it. Um,
10:18
Speaker 2: they'd asked me about my daughter that I'd spoken about
10:21
Speaker 2: and what she died of. And it was nothing that
10:23
Speaker 2: could possibly be related to this. Um, and so we
10:28
Speaker 2: went to Oxford and we were put in a ward, um,
10:32
Speaker 2: the ward that's specific for bowels. And pretty quickly they
10:36
Speaker 2: told us their plan was to do the biopsy. Um,
10:40
Speaker 2: I think the rectal suction biopsy. Um, so we did
10:45
Speaker 2: that after about. a week and a half, they introduced
10:49
Speaker 2: us to the idea of washouts, which was to become
10:53
Speaker 2: our new normal over the next, the coming months, which was,
10:59
Speaker 2: it was a weird thing. I learned how to do it.
11:00
Speaker 2: And I remember at the start thinking there's no way
11:03
Speaker 2: I'll ever be able to perform this procedure. And then
11:05
Speaker 2: I could. And that was quite reassuring to know that
11:10
Speaker 2: I could help him in that way. He had the
11:12
Speaker 2: biopsy and they said that they didn't know, but they
11:16
Speaker 2: were pretty certain. that this was what it was just
11:19
Speaker 2: due to the way he was presenting and his like
11:22
Speaker 2: how hard his belly was and I remember that I
11:26
Speaker 2: didn't mention this but his belly was so hard it
11:30
Speaker 2: looked like you could see the outline of his intestines
11:33
Speaker 2: and so we took him home and we were just
11:38
Speaker 2: on the watch for enterocolitis because they told us about
11:42
Speaker 2: that while we waited for our results and we're doing
11:44
Speaker 2: the washouts which was awful because well it's awful anyway
11:50
Speaker 2: but we had because we have an older one he's
11:52
Speaker 2: just he was just like so like confused what was
11:55
Speaker 2: going on so we did our best to explain and
11:57
Speaker 2: we um we eventually had to resort to getting because
12:00
Speaker 2: I've got an iPad um I had to put something
12:03
Speaker 2: on that they could both look at so that they
12:05
Speaker 2: weren't both trying to interfere like the even though the
12:09
Speaker 2: younger one was maybe eight weeks old he was just
12:13
Speaker 2: he would get really upset and agitated by it Understandably so.
12:17
Speaker 2: I'm sure many people would. So we went through that.
12:22
Speaker 2: We waited for our results, which also was a bit
12:25
Speaker 2: of a trouble to get them because I had to
12:27
Speaker 2: ring a few times and they were saying that they
12:29
Speaker 2: didn't know because his results were inconclusive. They could see
12:33
Speaker 2: that there were the ganglion cells, but that they weren't
12:36
Speaker 2: normal and that they were sparse. Um, and so they said,
12:40
Speaker 2: we're going to treat it as, as Hirschsprungs and we'll
12:43
Speaker 2: find out during surgery if it actually is or not,
12:46
Speaker 2: because sometimes the samples can get messed up and something
12:49
Speaker 2: like that. So we were on the waiting list, waiting
12:53
Speaker 2: for surgery, attending all these appointments because he'd been to
12:56
Speaker 2: the NICU. He got transferred to a bunch of different services.
13:00
Speaker 2: It felt like every week we were somewhere and then
13:02
Speaker 2: somehow we were supposed to fit in twice daily, sometimes
13:05
Speaker 2: three days if it was really bad.
13:07
Speaker 1: Um.
13:08
Speaker 2: Washouts. And he did actually poo a few times. And
13:13
Speaker 2: I remember thinking, it wasn't normal, but I remember thinking, oh, well,
13:18
Speaker 2: he can't have it. I just was so confused as
13:21
Speaker 2: to what was going on. And I was sure that
13:23
Speaker 2: he was going to go under for the surgery and
13:25
Speaker 2: they were going to come and tell me, like, it's
13:28
Speaker 2: not anything. And to be honest, it sounds really bad,
13:31
Speaker 2: but I was kind of hopeful it was this because
13:35
Speaker 2: at the time I thought, It will give me something.
13:38
Speaker 2: It will give a focus and a name. The idea
13:41
Speaker 2: of being left out in like what on earth is
13:43
Speaker 2: going on with my child. And I've seen on these
13:46
Speaker 2: groups that I'm in so many stories of people like looking,
13:49
Speaker 2: searching for answers that they can't find any because either
13:54
Speaker 2: they're not getting the right help or the results aren't exact.
13:58
Speaker 2: And so I think I consider our family quite lucky
14:01
Speaker 2: that it was able to be treated as Hirschsprungs, even
14:03
Speaker 2: though it wasn't confirmed. And yeah, the night of the
14:08
Speaker 2: morning of the surgery, because I live quite a way
14:11
Speaker 2: away from the hospital we were having it at. I
14:13
Speaker 2: woke up really early and I gave him his last
14:15
Speaker 2: feed because I was like, I don't know when I'm
14:16
Speaker 2: going to next. be able to feed him. And we
14:20
Speaker 2: got to the hospital and I just, he was like,
14:24
Speaker 2: because he was the youngest, he was the calmest on
14:26
Speaker 2: the ward. I remember they told me, you know, we
14:29
Speaker 2: get the younger ones in first because they can't cope
14:31
Speaker 2: with the starvation. But there were like toddlers running around
14:35
Speaker 2: that I thought they were doing far worse with it.
14:41
Speaker 2: And so they got him in and they said, you know,
14:46
Speaker 2: we can't tell you anything that's going on during. And
14:49
Speaker 2: I did, I said to them, you know, I have
14:52
Speaker 2: lost a child before and I'm just concerned about what
14:55
Speaker 2: could happen. And they said, we understand and we'll do
14:57
Speaker 2: our best we can to, you know, get everything perfect.
15:00
Speaker 2: And I took him into the anaesthetic room. And I
15:04
Speaker 2: was really nervous about that part of like letting him
15:07
Speaker 2: go to sleep. But actually he was Like his eyes
15:12
Speaker 2: were still half open when I left. They said, oh,
15:15
Speaker 2: he's gone, like he's gone to sleep. But he didn't
15:18
Speaker 2: look like I thought he would look. I was a
15:20
Speaker 2: lot more scared for that than it actually was. He
15:25
Speaker 2: went through the surgery. It took longer than I expected.
15:28
Speaker 2: I think it ended up about seven or eight hours,
15:31
Speaker 2: which I know they do take forever, but they'd estimated
15:34
Speaker 2: six hours. So I remember about the seven hour mark,
15:36
Speaker 2: I was like, oh God, it's all gone terribly wrong.
15:39
Speaker 2: And then finally they told me, you know, you can
15:41
Speaker 2: come through. It all went great. He was just taking
15:44
Speaker 2: a little bit longer to wake up from the anesthetics.
15:47
Speaker 2: And yeah, I got to go in and I saw
15:49
Speaker 2: him and his little face. He was having a cuddle
15:51
Speaker 2: with one of the nurses. And I should mention that
15:54
Speaker 2: the team that we had, we were in Oxford. They
15:57
Speaker 2: were just absolutely amazing. They were so kind to me
16:00
Speaker 2: and to him. And they really made us feel like
16:03
Speaker 2: they were doing everything they could. His specific surgeon was
16:07
Speaker 2: was absolutely amazing and I consider him like I consider
16:11
Speaker 2: that he saved my child's life um so yeah really
16:15
Speaker 2: appreciative of that and he was he was just there
16:17
Speaker 2: and his recovery was actually pretty amazing um so they
16:21
Speaker 2: told me to pack for seven days we'd got you
16:23
Speaker 2: know the Ronald McDonald house we'd got a room there
16:27
Speaker 2: and he had the surgery I believe Friday and on
16:31
Speaker 2: Monday morning they said you can go home um which
16:35
Speaker 2: was really unexpected. And they said, you know, he's doing
16:38
Speaker 2: really well. And yeah, it was like he was... At first,
16:45
Speaker 2: it seemed like it had worked perfectly and like everything
16:48
Speaker 2: was going. But then, yeah, slowly his bowel movements slowed
16:52
Speaker 2: down again. And so we didn't... I think we've only
16:56
Speaker 2: ever done maybe two or three washouts since surgery, which
16:59
Speaker 2: is a definite result. But he has had to have Botox. Um,
17:05
Speaker 2: and he's having quite a lot of laxatives, but yeah,
17:08
Speaker 2: so that, that's pretty much where we are today. The
17:09
Speaker 2: Botox hasn't particularly worked. Unfortunately, the, um, his bowel movements
17:16
Speaker 2: are still like hard and like little tiny pebbles. And
17:20
Speaker 2: so he struggles with that. Um, but he's in like
17:24
Speaker 2: a lot of other ways. He's like a river child,
17:27
Speaker 2: but he's, he's a lot more hungry. Like he loves
17:30
Speaker 2: his food. Um, and like I was saying earlier, he's
17:33
Speaker 2: a lot thirstier. And he's also a little developmentally behind,
17:38
Speaker 2: which I attribute to having spent time in hospital because
17:43
Speaker 2: after his Botox, he had to spend a little bit
17:45
Speaker 2: longer because he was struggling to recover from the anesthetics
17:49
Speaker 2: they gave him. He was struggling a little bit with
17:51
Speaker 2: his breathing. And he did have an episode of enterocolitis.
17:56
Speaker 2: So he's a little bit developmentally behind, not running around
18:00
Speaker 2: yet like a lot of his friends are. just sort
18:02
Speaker 2: of crawling around and he's very small for his age
18:05
Speaker 2: as well. So that's what we're keeping an eye on
18:08
Speaker 2: at the moment. But yeah, that's pretty much our story.
18:12
Speaker 1: Wow. And it's an incredibly interesting story. I've got plenty
18:17
Speaker 1: of questions that I'd love to get your thoughts on.
18:20
Speaker 1: But first, I think it would be remiss of me
18:25
Speaker 1: if I didn't offer condolences for your daughter, obviously. Thank you.
18:30
Speaker 2: Thank you. That means a lot.
18:32
Speaker 1: I think also your son seems to show sort of
18:37
Speaker 1: classic Hirschsprung's symptoms.
18:40
Speaker 2: Yes.
18:41
Speaker 1: When you talk about, I know you were talking about
18:44
Speaker 1: the sort of differently coloured sick, the sort of electric green,
18:49
Speaker 1: greeny yellow type sick, the really hard stomach. They all, again,
18:58
Speaker 1: it kind of reminds me a lot of some other
19:00
Speaker 1: stories that have been, Well, pretty much all other stories
19:04
Speaker 1: have been on here that show classic Hirschsprung symptoms.
19:07
Speaker 2: Yeah.
19:09
Speaker 1: But obviously not, if the hospital you're at or the
19:15
Speaker 1: people within the hospital don't quite know what Hirschsprung is,
19:20
Speaker 1: I guess that can be really difficult. And I think
19:24
Speaker 1: you said something there where you were, And I guess
19:28
Speaker 1: it might sound odd to people, but I totally understand
19:31
Speaker 1: where you're coming from. When you said you were glad
19:36
Speaker 1: in a way that he was diagnosed with Hirschsprung's because
19:38
Speaker 1: now this gives you a name. And did that sort of,
19:42
Speaker 1: I guess, have validation in a way?
19:47
Speaker 2: Definitely. And especially when it's come to... the rest like
19:51
Speaker 2: the future so we're able to use this name to
19:55
Speaker 2: be able to help get resources such as he has
19:59
Speaker 2: open access to his local hospital now because he's because
20:02
Speaker 2: he has the condition he also gets assistance at the
20:07
Speaker 2: nursery he's at currently because they're able to make provisions
20:11
Speaker 2: due to knowing the extent of the condition. I think
20:15
Speaker 2: that if there was no name to it, we'd kind
20:18
Speaker 2: of be out of nowhere, going to the doctors every
20:21
Speaker 2: other day, you know, asking for help. Whereas it definitely
20:25
Speaker 2: validates that I was right to have been worried and
20:29
Speaker 2: that I wasn't just overreacting to like normal newborn behaviour
20:33
Speaker 2: as people thought of it.
20:36
Speaker 1: Yeah, definitely. That makes complete sense. And I have had
20:41
Speaker 1: a lot of mothers that I've spoken to who, you know,
20:47
Speaker 1: haven't been taken seriously and have been called anxious. And
20:53
Speaker 1: their concerns are, or have been proven to be, especially
20:56
Speaker 1: in your case as well, completely valid. And I still,
21:01
Speaker 1: and will always, for as long as I do this podcast,
21:04
Speaker 1: I will always consider push for mother's instinct because I
21:09
Speaker 1: just I mean as I've said several times on here
21:12
Speaker 1: saved my life with my mum so it's it's something
21:17
Speaker 1: that I think and and it's and it can be
21:21
Speaker 1: a difficult one and I don't know necessarily how how
21:24
Speaker 1: you would explain it either but there's people have explained
21:28
Speaker 1: it to me in such a way that you know
21:31
Speaker 1: something isn't right but you don't quite no I guess
21:36
Speaker 1: for you you probably had a little bit more of
21:38
Speaker 1: an idea because you googled and it come up with
21:40
Speaker 1: this word so when they said the word Hirschsprungs you
21:43
Speaker 1: were a bit more I guess prepared for it in
21:46
Speaker 1: a way yes.
21:48
Speaker 2: I think the thing is I'm I'm one of those
21:51
Speaker 2: people that's I'm over researcher as soon as as soon
21:55
Speaker 2: as I saw the symptoms it lined up exactly um
21:59
Speaker 2: and so when they told me about it they they
22:01
Speaker 2: did say to me like oh you seem to already
22:03
Speaker 2: know a lot about this and I said Well, I
22:06
Speaker 2: have spent, I think he was about seven days old
22:08
Speaker 2: when we started hearing, maybe about two weeks old when
22:11
Speaker 2: we started hearing about it. I said I spent about
22:13
Speaker 2: the last five days looking at what this could be
22:17
Speaker 2: and what this means for the rest of his life. So, yeah,
22:22
Speaker 2: I think it's just one of those things that I'd
22:26
Speaker 2: heard about and when I'd heard about it, it was
22:30
Speaker 2: able to match up perfectly.
22:33
Speaker 1: And that must have, I guess, as we said before,
22:36
Speaker 1: with giving a name to something, that must have helped.
22:39
Speaker 1: Obviously then you think, okay, actually this strange spelling condition,
22:45
Speaker 1: I've actually got a name for it and I was
22:49
Speaker 1: right and I did know, which is... And I think
22:55
Speaker 1: being an over-researcher is a good thing. I think knowledge
22:58
Speaker 1: is power in that sense.
23:00
Speaker 2: Yes.
23:00
Speaker 1: And I think... The fact that, yes, obviously Hirschsprungs must
23:05
Speaker 1: still have come as a shock to you because it's
23:11
Speaker 1: not something that we're going to know a great deal
23:15
Speaker 1: of people that have unless you have sort of a
23:20
Speaker 1: family history of it, which quite a few people do.
23:22
Speaker 1: But in your case and in my case and in
23:25
Speaker 1: many others, we are the one in 5,000 where we
23:30
Speaker 1: don't have any family history and we just have it.
23:33
Speaker 1: you know, but it's good that you've done the research
23:37
Speaker 1: and you, it hasn't, and you were a little bit
23:41
Speaker 1: more prepared for it, which is really, really good. But
23:44
Speaker 1: it's interesting as well, kind of go back a little bit,
23:49
Speaker 1: that your son did pass the meconium because that's, I
23:53
Speaker 1: was talking about sort of classic Hirschsprung symptoms. That is
23:57
Speaker 1: one that they obviously look for. But it's not, always
24:03
Speaker 1: the case so it's not always the case that the
24:06
Speaker 1: child won't pass meconium and then or will pass meconium
24:11
Speaker 1: and then that rules out her sprungs which isn't necessarily
24:14
Speaker 1: true either um was that something that was sort of
24:20
Speaker 1: explained as well or was that something that you had
24:22
Speaker 1: to sort of push for.
24:25
Speaker 2: Um i think a bit of both like with the
24:28
Speaker 2: first few times i spoke to people Like the first
24:31
Speaker 2: hospital I was at, it was a little bit like,
24:33
Speaker 2: did he pass meconium? Yeah. I said yes. And then
24:36
Speaker 2: it was sort of like, okay, well probably not that then. Um,
24:39
Speaker 2: but then when I spoke to the surgeons that were more,
24:44
Speaker 2: I guess, experienced with Hirschsprungs, they did say like, oh, well,
24:48
Speaker 2: it is not common that they will pass meconium and
24:53
Speaker 2: go on to Hirschsprungs, but it's not, not heard of.
24:57
Speaker 2: And it's not even that uncommon. You know, I hear
25:00
Speaker 2: stories of people being diagnosed at four and, you know,
25:04
Speaker 2: they could have super short or they could just have short.
25:06
Speaker 2: And I've even heard that people have, they have no
25:08
Speaker 2: function and so it just slides through and, you know,
25:11
Speaker 2: they've still got it. So, yeah, I think we definitely
25:16
Speaker 2: got that communicated to us when we were at the
25:18
Speaker 2: more specialised hospital that that doesn't always mean no Hirschbronx
25:23
Speaker 2: if they've passed it.
25:25
Speaker 1: Definitely, definitely. And speaking of sort of segments and, and
25:29
Speaker 1: and whatnot um you said your son has short segment
25:34
Speaker 1: i believe it's just kind of i think the most
25:36
Speaker 1: the most common one um not that there really is
25:39
Speaker 1: a common way of a really rare disease but i
25:42
Speaker 1: think it's around 80 percent something like that um of
25:47
Speaker 1: people with her sprungs have short segment um but i
25:50
Speaker 1: guess it is it explained now in sort of centimeter
25:54
Speaker 1: terms rather than short long etc.
25:58
Speaker 2: So After the surgery, the surgeons did come and see
26:03
Speaker 2: us and I asked, you know, is it short, long?
26:05
Speaker 2: I knew it wasn't a total chronic. I did kind
26:08
Speaker 2: of know it wasn't long, just the way that the
26:10
Speaker 2: symptoms were and the fact that it was inconclusive, the test.
26:14
Speaker 2: At least in my head, I assumed it will be
26:16
Speaker 2: conclusive if it's anything else. I don't know if that's
26:22
Speaker 2: probably not true, but in my head, that's what I thought.
26:25
Speaker 2: And I remember that the surgeon sort of, well, it
26:27
Speaker 2: wasn't the surgeon, it was someone else sort of said like, oh,
26:29
Speaker 2: that doesn't really matter. But then they kind of held
26:31
Speaker 2: up a, right between their fingers, the estimate. And it
26:35
Speaker 2: looked like maybe, I really don't know, maybe 10, 15,
26:39
Speaker 2: 20 centimeters, something like that, somewhere between that. And they said, yeah,
26:43
Speaker 2: probably short. And I found that, I find it quite
26:48
Speaker 2: important to know because My child is so young and
26:51
Speaker 2: when he grows up and talks about it, I want
26:53
Speaker 2: him to know exactly what's going on and how he
26:57
Speaker 2: can explain it to other people. Because I know that
27:00
Speaker 2: I won't always be there with him in his doctor's appointments.
27:02
Speaker 2: I'm sure there'll come a time where he'll be like,
27:04
Speaker 2: I don't want you to come with me. And he'll
27:07
Speaker 2: have to explain it for himself. And giving him all
27:09
Speaker 2: the information is what gives him, yeah, like you said,
27:12
Speaker 2: knowledge is power. And that could help him out in
27:15
Speaker 2: the future if he ever has any sort of Hirschsprung-related emergencies.
27:20
Speaker 1: For sure. For sure. And it is one of the
27:23
Speaker 1: tricky things with Hirschsprungs. It's not like a lot of
27:27
Speaker 1: conditions in the fact that we are born with it. And,
27:31
Speaker 1: you know, for better or for worse, there will be
27:36
Speaker 1: a lot of things that we just don't remember because
27:38
Speaker 1: we are so young. You know, there will be surgeries
27:42
Speaker 1: that we don't remember, which, I mean, can be attributed
27:44
Speaker 1: as a good thing, you know, or certainly consciously don't
27:48
Speaker 1: remember it, not necessarily subconsciously. Um, but so there is
27:54
Speaker 1: positives towards that, but then knowing everything that's happened to
27:58
Speaker 1: you and it's really, really good that you, that you
28:00
Speaker 1: want him to sort of understand his condition, because I
28:03
Speaker 1: think that's, that's really, really helpful will be really, really helpful. Um,
28:10
Speaker 1: but it is, it is a, um, it is a
28:13
Speaker 1: tricky condition because everything, well, everything, a lot happens so,
28:18
Speaker 1: so young. that we just don't remember it. And then
28:23
Speaker 1: trying to have to sort of process a little bit
28:25
Speaker 1: later on in life that, oh, all of this happened
28:27
Speaker 1: to me and this, that, the other. I guess, certainly
28:31
Speaker 1: for me, but for a lot of others, it is
28:34
Speaker 1: quite a tricky one. Because obviously, you know, we weren't
28:38
Speaker 1: really aware of what's going on at the time. But
28:42
Speaker 1: it is. And I think just on that sort of
28:44
Speaker 1: explaining as well, I think... When you said you explained
28:50
Speaker 1: to your older child about your son's Hirschsprungs, because I
28:57
Speaker 1: think that's a really difficult thing for parents to do
29:00
Speaker 1: as well. How do you explain to siblings in a
29:08
Speaker 1: way they'll understand about a condition that is A, so
29:11
Speaker 1: rare that you probably won't meet a lot of other
29:14
Speaker 1: people with it, and B, it's really difficult to spell
29:18
Speaker 1: and say um at such a young age how i'm
29:22
Speaker 1: really interested to know because again i don't think there's
29:25
Speaker 1: a right or wrong way to do this at all
29:27
Speaker 1: but how did you sort of broach that and explain
29:32
Speaker 1: that with your old child?
29:38
Speaker 2: Well, it kind of came about naturally because he saw
29:41
Speaker 2: the process of the washouts and he was wondering why
29:45
Speaker 2: they happened. He was at a very curious stage and
29:49
Speaker 2: he still is. You know, why is my brother having
29:53
Speaker 2: to have this done? And when we kind of explained,
29:56
Speaker 2: he would then say, oh, well, my tummy hurts. Can
29:59
Speaker 2: I have a washout? And so then I explained, no,
30:03
Speaker 2: it's only for specific conditions. And he's a very, like,
30:09
Speaker 2: a child that likes to ask a lot of questions.
30:10
Speaker 2: So we did manage to get quite in detail of
30:12
Speaker 2: a bit if your brother's bowel does not work and
30:17
Speaker 2: it had to be removed and that's why he's in
30:19
Speaker 2: the hospital. And so, yeah, he'll say the name. He'll
30:22
Speaker 2: say Hirschsprungs and he talks about it. So, yeah, it
30:28
Speaker 2: just sort of came up naturally, I suppose. And I
30:31
Speaker 2: was lucky that he got it and that we didn't
30:35
Speaker 2: have to stay too long in the hospital after the
30:39
Speaker 2: first incidence of it, that it wasn't like I was
30:43
Speaker 2: away for ages and ages and ages. It was just
30:45
Speaker 2: that few weeks in the start. So it was hard
30:51
Speaker 2: to explain. And he did have a lot of questions
30:54
Speaker 2: and he did have a lot of, like, not knowing
30:56
Speaker 2: where I'd gone and he was quite clingy when I
30:59
Speaker 2: got back, but understandably so. And I think it's kind
31:02
Speaker 2: of taking it as it comes with how much they
31:06
Speaker 2: kind of want to know and how much they are
31:09
Speaker 2: willing to just let it be and not worry about
31:13
Speaker 2: it too much. It depends on the child's personality and
31:16
Speaker 2: he's quite a curious child. So yeah, we did go
31:19
Speaker 2: quite in detail because he asked a lot of questions.
31:23
Speaker 1: Yeah, I think that's a really interesting point you make
31:25
Speaker 1: actually there, where it's down to the individual themselves, the
31:30
Speaker 1: individual child. Some want to know the ins and the outs, literally,
31:39
Speaker 1: of everything, and that's absolutely fine. And I've had, there's
31:45
Speaker 1: one particular episode I'm thinking of where I had somebody
31:47
Speaker 1: who saw all of the scars on his stomach his
31:51
Speaker 1: mum said, well, you have Hirschsprung, and he goes, oh, okay, cool,
31:54
Speaker 1: and goes outside to play. You know, it's, it can be,
31:58
Speaker 1: it can be both ends of the spectrum, and both
32:01
Speaker 1: ends are absolutely fine. You know, I don't, like I said,
32:06
Speaker 1: I don't think there's a right way and a wrong
32:08
Speaker 1: way to approach that, but it is really interesting to,
32:14
Speaker 1: to find out that, you know, lots of people do
32:16
Speaker 1: want to, people do want to sort of know, you know,
32:20
Speaker 1: what happens, and, And it's funny that you say when
32:25
Speaker 1: his stomach hurts, he asks to have a washout as well,
32:29
Speaker 1: which I think is just a really funny understanding.
32:32
Speaker 2: Yeah.
32:33
Speaker 1: But to a young child, I guess that totally makes sense. Well,
32:38
Speaker 1: that's medicine, you know. I want medicine.
32:41
Speaker 2: Yes.
32:42
Speaker 1: And I'll feel better. Again, totally makes sense in that sense. Yeah.
32:49
Speaker 1: But yeah, no, I think that's really, really interesting. Really,
32:53
Speaker 1: really interesting. There was another point you made as well
32:59
Speaker 1: when you went, and I'm jumping all over the place here,
33:02
Speaker 1: but when you went into hospital, you said that for
33:07
Speaker 1: reasons I think that are totally understandable, your blood pressure
33:11
Speaker 1: really shot up as well. Was that right? Yeah.
33:15
Speaker 2: Well, that was because of my preeclampsia.
33:18
Speaker 1: Yes.
33:19
Speaker 2: Um yes it did so I kind of that kind
33:25
Speaker 2: of tied in because I even though there was the
33:28
Speaker 2: vomiting that they kind of were like okay well we've
33:33
Speaker 2: okayed your child we're making sure that you're okay and
33:37
Speaker 2: he was almost discharged before I was after after giving
33:40
Speaker 2: birth and so it made kind of fighting for it
33:43
Speaker 2: feel silly like I felt like I was was fighting
33:48
Speaker 2: to stay in the hospital that I wanted to leave
33:49
Speaker 2: so badly. But it was more of like just wanting
33:53
Speaker 2: to be taken seriously in terms of his condition. And
33:58
Speaker 2: I was lucky enough to not have a relapse of
34:04
Speaker 2: high blood pressure with everything that was going on. Once
34:07
Speaker 2: it came down, it stayed down because... yeah we'd been
34:12
Speaker 2: concerned that because he was ill it would like have
34:14
Speaker 2: an effect on that but yeah I was lucky.
34:17
Speaker 1: In that sense definitely definitely and I know you said
34:21
Speaker 1: about the preeclampsia and how that would affect the blood
34:24
Speaker 1: pressure but I can imagine also just as a mother
34:27
Speaker 1: you know you'd naturally have high blood pressure because your
34:32
Speaker 1: son is obviously not very well and you're unsure about
34:36
Speaker 1: what's going on so I think I'm guessing that I
34:40
Speaker 1: don't know if they took that into account or not.
34:42
Speaker 2: I was lucky that they did because I already had
34:46
Speaker 2: spoken to them quite a lot about the relation between
34:50
Speaker 2: stress and high blood pressure, particularly in my case, because
34:53
Speaker 2: some people it doesn't affect them. They can have stress,
34:55
Speaker 2: but they kind of saw once he started getting into that,
35:01
Speaker 2: once they noticed he actually was ill, they kind of
35:03
Speaker 2: took that on board and were like, okay, well, going
35:06
Speaker 2: to have to be a bit lenient more lenient because
35:07
Speaker 2: it seems that you're in a stressful situation anyway um
35:11
Speaker 2: yeah and I'm yeah like I said I'm lucky enough
35:14
Speaker 2: that it hasn't come up again so yeah that's that's
35:19
Speaker 2: my last thing.
35:21
Speaker 1: That's really really good to hear um in terms of
35:25
Speaker 1: so it's good that we see the the blood pressure
35:28
Speaker 1: has stayed down um because again I can't imagine having
35:33
Speaker 1: not been there myself, well, I've been there as a
35:34
Speaker 1: patient but not as a parent, the amount of things,
35:38
Speaker 1: you know, because everything sort of happens very, very quickly,
35:42
Speaker 1: like you said, with 20 people coming into the room
35:46
Speaker 1: so fast, that that's naturally going to create anxiety and
35:52
Speaker 1: it's going to create sort of a really stressful situation. So, yeah,
35:59
Speaker 1: I'm not surprised there was high blood pressure as well.
36:02
Speaker 2: Yeah.
36:04
Speaker 1: So in terms of kind of now and looking towards
36:10
Speaker 1: the future, where do you see both sort of from
36:16
Speaker 1: a medical side and non-medical side, what do you sort
36:20
Speaker 1: of hope for him in the future?
36:25
Speaker 2: It's hard to say. I just hope that it comes
36:29
Speaker 2: to a point where there's like a balance between the
36:35
Speaker 2: medical stuff that we need to do and the rest
36:38
Speaker 2: of his life so he he is still struggling with
36:42
Speaker 2: his bowels um quite a lot and he does seem
36:46
Speaker 2: to be in pain some days and other days he's
36:48
Speaker 2: not in pain but he's at an age where teething
36:51
Speaker 2: and and he wants to get moving so it's hard
36:54
Speaker 2: to tell what's going on um so I just hope
36:56
Speaker 2: that he gets to a point where The rest of
36:59
Speaker 2: his life is the most important thing rather than managing
37:02
Speaker 2: his condition. Like I said, he's a little bit developmentally behind.
37:06
Speaker 2: So he's not walking around yet, which he has only
37:09
Speaker 2: just gone one. So it's not like he's late, really
37:12
Speaker 2: late or anything. But I have been told, I don't
37:15
Speaker 2: know how truthful this will end up being for him,
37:18
Speaker 2: that once he's running around, that should help a lot.
37:21
Speaker 2: Because gravity, from what I've heard, gravity can help move
37:25
Speaker 2: things along. So I hope that for him. I'd quite
37:30
Speaker 2: like to see if there's anything we can do about
37:33
Speaker 2: the constipation because he is on the dose of laxatives
37:38
Speaker 2: that's appropriate for his age and his condition. So maybe
37:41
Speaker 2: another round of Botox. But I just want him to
37:44
Speaker 2: be happy within himself. And he is a really happy
37:49
Speaker 2: little boy. He's always getting into mischief. I've already been
37:52
Speaker 2: joking that he's going to be that second child that
37:55
Speaker 2: jumps into danger. Whereas my older child's a little bit
37:58
Speaker 2: more cautious. And yeah, he's constantly crawling into things and
38:04
Speaker 2: doing everything. Like, yeah, doing everything. We had an incident
38:10
Speaker 2: two weeks ago where he went completely floppy and limp.
38:14
Speaker 2: And I thought he's got enterocolitis. I started panicking. I
38:18
Speaker 2: took him to the hospital because he had been throwing
38:20
Speaker 2: up and his tummy had been a bit funny. And
38:23
Speaker 2: I got him out of the car seat He rolled
38:26
Speaker 2: over and crawled off. They did all the tests and
38:29
Speaker 2: he turned out to be completely fine. It was just
38:32
Speaker 2: an episode of low blood sugar for some reason. So
38:39
Speaker 2: I think he's going to be one of those children
38:40
Speaker 2: that's just going to cause a lot of worry for me.
38:43
Speaker 2: And in the best ways. He's having fun and he's
38:47
Speaker 2: living his life and he's still a baby. Got to
38:50
Speaker 2: come find out his personality and see what what he's
38:54
Speaker 2: going to be like. And that's just my hope is
38:56
Speaker 2: he blossoms into like a, a little boy that worries
39:00
Speaker 2: less about his condition and just goes and lives his life. Fantastic.
39:05
Speaker 1: Well, long may that continue. Um, long may that continue.
39:09
Speaker 1: And I think that's an interesting point you make about
39:11
Speaker 1: gravity actually with, with, um, running around and, and whatnot.
39:17
Speaker 1: Cause I think that's, that's something that's again from plenty
39:20
Speaker 1: of doctors I've spoken to that, that that's something that's
39:24
Speaker 1: being active and what lies is i mean we know
39:27
Speaker 1: that being active is important of course but um yeah
39:31
Speaker 1: especially in hersprong's hersprong's children hersprong's people but um thank
39:36
Speaker 1: you so much for coming on um this evening it's
39:39
Speaker 1: been it's been really really great to chat to you
39:42
Speaker 1: and um and i wish you your son and the
39:45
Speaker 1: rest of your family all the very very best for
39:47
Speaker 1: the future.
39:49
Speaker 2: Thank you very much. Thank you.
39:55
Speaker 1: Thank you for listening and being part of this growing community.
39:58
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
40:01
Speaker 1: leave a review and share it with someone who might
40:04
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40:07
Speaker 1: via Instagram, Facebook and TikTok under the name Tom's Hairsprings Podcast.
40:12
Speaker 1: See you next week. Thank you.