Latest / Tom's Hirschsprung's Podcast / Episode 106 - With Karen Hill

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Episode 106 - With Karen Hill · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello, and welcome to episode one hundred and
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Speaker 1: six of Tom's Hirshprung's Podcast. I'm very glad to be
0:51
Speaker 1: joined by Karen this morning, and we are going to
0:54
Speaker 1: talk about your son. So welcome to the podcast. Karen,
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Speaker 1: Thank you, thanks so much for coming on. And I think,
1:01
Speaker 1: as we were talking a little bit before, I think
1:07
Speaker 1: one age group that doesn't get massively represented on this
1:11
Speaker 1: podcast is that sort of eighteen to twenty five age
1:16
Speaker 1: And your son is nineteen.
1:18
Speaker 2: If I'm right in saying yeah, it's just about to
1:20
Speaker 2: turn twenty in a few weeks, fantastic.
1:22
Speaker 1: So I think this age range is I mean, it's
1:26
Speaker 1: such a difficult age range to talk about, but at
1:31
Speaker 1: the same time, I think it's really really important for
1:33
Speaker 1: people to hear a little bit of maybe what the
1:37
Speaker 1: future may hold or you know what your son has
1:41
Speaker 1: been going through. So I guess it's kind of up
1:44
Speaker 1: to you where you'd like to start. But yes, over to.
1:48
Speaker 2: You, okay. So Kai was diagnosed. We never left hospital,
1:55
Speaker 2: so when I gave birth to him, so he was
1:57
Speaker 2: diagnosed days old. Predominantly, he didn't pass any maconium And
2:06
Speaker 2: it took a couple of times for me to be
2:09
Speaker 2: listened to. I was quite a young mom. I was
2:12
Speaker 2: twenty three, and at first, because his stomach had swollen
2:21
Speaker 2: up so much, it looked like the only way I
2:23
Speaker 2: could describe it, probably was like a red cricket ball.
2:26
Speaker 2: It was so swollen and distended, and he wasn't feeding properly.
2:31
Speaker 2: But they kept saying, you know, let's try to go away,
2:34
Speaker 2: try and feed him again and come back and see
2:38
Speaker 2: how he goes. And it just wasn't. And it wasn't
2:40
Speaker 2: until I had an amazing midwife could come back on
2:44
Speaker 2: shift and she was like, no, no, there's something going on,
2:49
Speaker 2: and they took him away for scout imaging and it
2:55
Speaker 2: just revealed like he was just totally that he had
2:59
Speaker 2: like toxic gasses, and at first they thought it was
3:02
Speaker 2: cystic fibrosis because they asked if that was any family history,
3:07
Speaker 2: So at first we thought we were dealing with that
3:11
Speaker 2: and then there was like, no, it's definitely something else.
3:14
Speaker 2: So we was transferred. At the time we was in Kent,
3:16
Speaker 2: so it was Lewisham Hospital and they were they that
3:22
Speaker 2: is where he had his biopsy is done and then
3:29
Speaker 2: he was diagnosed with Hirschprungs after the biob cees and
3:34
Speaker 2: we were quite lucky because the consultant there was one
3:39
Speaker 2: of the surgeons that could do pull throughs or the
3:44
Speaker 2: operations on small babies. He had to be viable, he
3:48
Speaker 2: had to be like a viable wait for them to
3:50
Speaker 2: do it. And when he hit the mark at sixteen
3:54
Speaker 2: days old, again you don't know how much it is affected,
3:59
Speaker 2: so it was all we was going in blindsided. We
4:03
Speaker 2: didn't know whether it was going to be short segment,
4:06
Speaker 2: long segment total. So that was quite a difficult time
4:12
Speaker 2: because he ended up being in surgery for about twelve
4:15
Speaker 2: hours at sixteen days old, so that was probably the
4:24
Speaker 2: most difficult I would say time. So, yeah, he had
4:29
Speaker 2: his surgery, so he had he's large colon removed and
4:36
Speaker 2: we was told after I think we were in hospital
4:39
Speaker 2: for about a couple of months in total, but when
4:45
Speaker 2: he come home he kept leading, just wouldn't tolerate the
4:51
Speaker 2: milk so and projectile vomiting. So again we was going
4:58
Speaker 2: back and he would have like more scopes and things
5:02
Speaker 2: like that. They thought that maybe something more was affected,
5:06
Speaker 2: but then they started making his milk up at the
5:09
Speaker 2: hospital just to take him off everything. So basically it
5:13
Speaker 2: was just fats and nutrients, so we started with that.
5:22
Speaker 2: Then it seemed to settle a little bit, and then
5:24
Speaker 2: of course weaning it started up again. He was just
5:30
Speaker 2: going through just I can't even explain the amount of
5:37
Speaker 2: like nappy changes and things like that that I had
5:39
Speaker 2: to go through, even to the point of when you
5:43
Speaker 2: have a newborn, like you always have like one, it
5:45
Speaker 2: open you always listening out for them. But it was
5:49
Speaker 2: almost as if he wouldn't wake up. I would literally
5:53
Speaker 2: I would hear him go to the toilet, pick him
5:56
Speaker 2: up out of bed, change his sheets, changes nappy, clean
6:00
Speaker 2: him down, and then put him back in the bed.
6:02
Speaker 2: And sometimes I would do that two three times a night.
6:06
Speaker 2: It was just awful, like he just wouldn't be able
6:09
Speaker 2: to tolerate anything. And that actually went on for up
6:15
Speaker 2: until he was probably about four or five years old.
6:19
Speaker 2: He probably he wasn't fully out of nappies until he
6:23
Speaker 2: was about seven because he just couldn't tolerate anything. And
6:29
Speaker 2: in the end we was transferred to Great Ormond Street
6:32
Speaker 2: Hospital when he was just under two, and they, I
6:39
Speaker 2: must say, obviously we was just speaking how they've been
6:41
Speaker 2: like my safety bank here for you know, nineteen years.
6:47
Speaker 2: They have been my if I was if I was
6:51
Speaker 2: worried about anything, I would be I could be straight
6:55
Speaker 2: on the phone or I would have letters. So if
6:58
Speaker 2: he was ill, I could go to any and they
7:00
Speaker 2: would call his team straight away. So I've always had
7:05
Speaker 2: that kind of comfort blanket. So he had a couple
7:11
Speaker 2: of more I say, operations, but they were more like
7:14
Speaker 2: biobously scopes to see what was going on with his
7:18
Speaker 2: bow because he just wasn't tolerating anything. Where up until
7:24
Speaker 2: about eighteen, he was on a dairy, gluten, egg and
7:28
Speaker 2: wheat free diet. So I mean, now vegan is quite
7:35
Speaker 2: known and there is so many foods available, but eighteen
7:40
Speaker 2: nineteen years ago, there was nothing. So I would have
7:44
Speaker 2: to make his food from scrap absolutely everything, just like
7:49
Speaker 2: little things. I remember him when he was about five
7:53
Speaker 2: or six. He'd never had a McDonald's or and his sister,
7:57
Speaker 2: who sixteen months younger than him, wanted him McDonald's. So
8:01
Speaker 2: what I used to do is I used to make,
8:04
Speaker 2: for example, the chicken nuggets and chips, and I used
8:06
Speaker 2: to go and get the happy Meal box and then
8:09
Speaker 2: put something in it so it wouldn't be and then
8:11
Speaker 2: I would put the food in it so it made
8:13
Speaker 2: him look like he had added a happy meal, and
8:16
Speaker 2: we'd go in the restaurant and eat it, just so
8:19
Speaker 2: you had that experience. I mean it was just little
8:21
Speaker 2: things like that, and I was say, oh my god,
8:23
Speaker 2: you haven't even you know, had these little I know
8:25
Speaker 2: they're not massive things, but they remember things like that,
8:28
Speaker 2: don't they. That's brilliant.
8:30
Speaker 1: I love it.
8:32
Speaker 2: By Advent calendars, I would have to take all the
8:35
Speaker 2: chocolate out. I mean it was really bad for me
8:37
Speaker 2: because I'd have to eat the chocolate monastery and I
8:43
Speaker 2: would just put his chocolate in there and so that
8:46
Speaker 2: he would have an advent calendar because there was no
8:48
Speaker 2: Advent calendars around for vegan or dairy free eighteen nineteen
8:53
Speaker 2: years ago. So you know, things like that I would
8:56
Speaker 2: have to do because he anytime we reintroduce food. I
9:02
Speaker 2: mean we was under dietitians and nutritionists. He would just bleed.
9:07
Speaker 2: His bow was just so sensitive. We just couldn't get
9:12
Speaker 2: him to a point of he could eat something even traces.
9:17
Speaker 2: It would just he would either throw up or it
9:19
Speaker 2: would be like the other end. And it was just
9:21
Speaker 2: really a tough time. So yeah, we was under great industry,
9:31
Speaker 2: as I said, for quite a few years. And that's
9:35
Speaker 2: how it's basically been for his life. Basically we have
9:44
Speaker 2: tried introducing foods and it just is an absolute no. Lo.
9:48
Speaker 2: It just doesn't agree with him, unfortunately. And he has
9:52
Speaker 2: had a couple of bouts of colitis like Hurst Broung colitis.
9:59
Speaker 2: He had an adult form of an ulcer when he
10:03
Speaker 2: was about seven eight. We was it was over Christmas
10:09
Speaker 2: time actually, and it was a couple of days before Christmas,
10:13
Speaker 2: and I was just begging. I was like, it's just
10:15
Speaker 2: that anyway we can get him home for Christmas. And
10:17
Speaker 2: luckily they sent me by with the medication, but then
10:21
Speaker 2: we had to go back during the Christmas week just
10:23
Speaker 2: so that they could monitor him. But yeah, it's been
10:30
Speaker 2: definitely an eye opener. And as I said to you,
10:36
Speaker 2: previously that the topic of who and stalls is quite
10:41
Speaker 2: an open conversation in my house, and I'm quite open
10:44
Speaker 2: to talk about it. So I think because Kai does
10:51
Speaker 2: have autism development needs as well, it's been quite difficult,
10:59
Speaker 2: and actually I know that we are going to go
11:02
Speaker 2: on to genetic testing. But I'm looking at research. There
11:09
Speaker 2: is quite a lot of research with Hirschmuns and autism
11:14
Speaker 2: that are linked together, isn't there? I know, so I'm
11:19
Speaker 2: on quite a lot of support groups, and I would
11:22
Speaker 2: say probably, I don't know. Eighteen ninety percent also have
11:27
Speaker 2: autism as some sort of development disorder with Hirshbrungs. It's
11:32
Speaker 2: quite a high number.
11:35
Speaker 1: Yeah, I mean, I know there's been a lot of
11:38
Speaker 1: research on Hirshprungs and Down syndrome, and I know that
11:43
Speaker 1: there's a link. I can't remember the exact facts. I
11:46
Speaker 1: won't quote them because I can't remember them exactly, but
11:49
Speaker 1: there is there's a lot of research in Hirshprungs and
11:52
Speaker 1: Down syndrome. Possibly not as much certainly from what I've
11:56
Speaker 1: seen in autism and Hirshbrungs. Yeah, I'm not I but
12:02
Speaker 1: that seems a lot of very large percentage.
12:06
Speaker 2: There is quite every personal there's the odd child that
12:12
Speaker 2: just has the operation and they're good to go. I
12:17
Speaker 2: do know a couple like that. I mean, there's you know,
12:20
Speaker 2: a couple on the support group that they've had no problems,
12:22
Speaker 2: They've just had the operation and they've been good to
12:24
Speaker 2: go and they've been absolutely fine. Unfortunately, there are just
12:30
Speaker 2: so many children that either get missed or do have
12:37
Speaker 2: dislike development disorders or other things got medical disorders going
12:41
Speaker 2: on with it. My doctor, my GP, actually missed a
12:47
Speaker 2: case of Hirschmungk's disease. So when Kai was poorly, he
12:51
Speaker 2: was always so on it. He would always be so
12:54
Speaker 2: you know, and if I was ever concerned, bring him
12:56
Speaker 2: in straight away because he was so paranoid about missing
12:59
Speaker 2: and know in case of her sprungs again. So he
13:05
Speaker 2: was really good with his care as well. But I
13:09
Speaker 2: think as he was getting older things did get more
13:18
Speaker 2: challenging because he was at school and I would have
13:22
Speaker 2: to his care plan would obviously go over to his school.
13:26
Speaker 2: Kai was in special schools. He did start off in
13:31
Speaker 2: the mainstream, but he just didn't cope very well, so
13:36
Speaker 2: he was transferred over to special schools. But he yeah,
13:45
Speaker 2: it's just having sort of you're having to trust somebody else.
13:49
Speaker 2: I think that was my because I've always been his
13:52
Speaker 2: main care. It was trusting somebody else that they would
13:57
Speaker 2: sort of be on top of it, because I mean
14:00
Speaker 2: you probably you know yourself that as if you get ill,
14:06
Speaker 2: then it usually goes to your stomach. That's how it
14:10
Speaker 2: would work with Kai if he especially in the winter,
14:14
Speaker 2: we used to really suffer in the winter. If he
14:19
Speaker 2: ever got even a cold, it would just go straight
14:21
Speaker 2: to his stomach. And I was always so although you
14:27
Speaker 2: can't cotton wall, I was always sort of so aware
14:32
Speaker 2: of things, and if there was like a bug going
14:35
Speaker 2: around in scor and things, I would always be made
14:39
Speaker 2: aware by sort of the staff because it would just
14:42
Speaker 2: make him so ill. And I would probably say half
14:44
Speaker 2: of the time he would need to go into hospital
14:48
Speaker 2: because he would just get so poorly.
14:51
Speaker 1: Yeah, I mean that's a that is a tricky one,
14:53
Speaker 1: especially winter time. Everybody's susceptible to more bugs throughout the winter.
15:00
Speaker 1: But I think because we're sort of immune compromised, don't
15:04
Speaker 1: we a little bit? Yeah, a lot the bugs and
15:09
Speaker 1: whatnot are can be a little bit more serious for
15:12
Speaker 1: us than maybe the average person.
15:14
Speaker 2: Yeah, yeah, it's true. It really is so touchwood. As
15:21
Speaker 2: he's got older, it's got a little bit better, I
15:25
Speaker 2: think as he's grown. I mean he's quite. He's I
15:29
Speaker 2: think about five to eleven and he's quite well built,
15:33
Speaker 2: so that's always helped him. He will eat anything that
15:40
Speaker 2: you put in front of him, so he's quite. He's
15:42
Speaker 2: a typical boy like that. I say boy, but he's
15:46
Speaker 2: a young man. But yeah, he eats quite well. Before
15:54
Speaker 2: we left great Ormond Street we reintroduced little bits. He
16:00
Speaker 2: can tolerate traces, but dairy is a complete no no.
16:03
Speaker 2: Stil just cannot tolerate dairy at all. So we've just,
16:09
Speaker 2: you know, accepted the fact that he just can't tolerate
16:12
Speaker 2: dairy and traces of things like wheat and gluten will
16:19
Speaker 2: they'll upset him a little bit, but it's where he
16:21
Speaker 2: can probably tolerate it a little bit. So for example,
16:25
Speaker 2: I don't know, if he went to a birthday or
16:27
Speaker 2: something unwanted, I don't know, a bit of some food
16:30
Speaker 2: there or something, and he knew he would probably have
16:32
Speaker 2: a little bit, but he would probably pay the consequences
16:35
Speaker 2: the next day. But whereas dairy, it would really upset him.
16:38
Speaker 2: So he knows. I think that scarred him for life.
16:42
Speaker 2: Not to copy dairy, but yeah, I think it's hard because,
16:50
Speaker 2: as you say, when you hit puberty, your hormones and
16:55
Speaker 2: things like that. Once that all kicks in, and that's
16:57
Speaker 2: having to explain to them about their condition and having
17:04
Speaker 2: they need to try and be independent with managing it.
17:09
Speaker 2: You probably know with yourself. And it's hard because I
17:15
Speaker 2: mean he was a very quite angry over it when
17:17
Speaker 2: he was younger because he couldn't eat the same foods
17:20
Speaker 2: and things, you know, even things like school Christmas dinners.
17:23
Speaker 2: I used to cook a Christmas dinner and then drive
17:25
Speaker 2: it to the school so he could eat the school
17:27
Speaker 2: Christmas dinner with all of his friends because he obviously
17:30
Speaker 2: could eat it. He used to get really angry over it.
17:35
Speaker 2: But I think now he's just accepted and because things
17:40
Speaker 2: like vegans food is so I don't want to say fashionable,
17:44
Speaker 2: but it's more aware now and quite a lot of
17:46
Speaker 2: people do have that diet. He's actually quite okay with it,
17:51
Speaker 2: but we did go through quite a few years of
17:54
Speaker 2: just being quite angry because he couldn't eat food and
17:57
Speaker 2: certain types of food. But I would say as he's
18:06
Speaker 2: got older, it's I think it's difficult because you can't
18:14
Speaker 2: see everything that's going on, Like I have to trust
18:16
Speaker 2: his wording, and he'll be like, yeah, Mum, it's fine,
18:19
Speaker 2: it's fine, mum. But and then he might be ill
18:23
Speaker 2: a couple of days later, and I'll be like, Okay,
18:25
Speaker 2: obviously it wasn't fine. You probably know yourself. Maybe you've
18:30
Speaker 2: done that as well. I don't know.
18:32
Speaker 1: Yeah, I think it's a tricky one with Hirshrum's because
18:36
Speaker 1: I believe that we have a higher pain tolerance than
18:43
Speaker 1: other people. Yeah, so what hurts others or what's you know,
18:48
Speaker 1: illness to others maybe is normal to us. So maybe
18:53
Speaker 1: I don't know. Maybe he is kind of going, oh,
18:56
Speaker 1: everything's fine, because it's actually like more to him like
19:00
Speaker 1: it was to me. But for anybody else they'd be going,
19:05
Speaker 1: oh no, I'm really in pain. I'm really ill. But
19:09
Speaker 1: just because I think we have because of all the
19:11
Speaker 1: surgeries and the procedures we have, and because the stomach
19:15
Speaker 1: is quite a delicate area just generally, and you've had
19:18
Speaker 1: all of this invasive stuff. I mean, even if I
19:21
Speaker 1: say only just had the pull through, even if you
19:24
Speaker 1: just had one or two surgeries, that that's a really
19:27
Speaker 1: invasive procedure. Yeah, and there's a lot of work that
19:31
Speaker 1: goes on and into pull throughs and this, that and
19:33
Speaker 1: the other. And I think as time goes on, our
19:38
Speaker 1: pain tolerance is pretty high. So maybe we do cover
19:42
Speaker 1: I know, I have you know, you kind of you
19:45
Speaker 1: cover things and you go, oh, it's okay, it'll be
19:47
Speaker 1: all right in a minute, or I'll be all right
19:49
Speaker 1: tomorrow or whatever, and actually and really not very well,
19:52
Speaker 1: but you just get on with it because it's all
19:55
Speaker 1: you've ever known.
19:56
Speaker 2: Absolutely, And I think that's so true because he has
19:59
Speaker 2: got a very high pain lushold and he would he
20:05
Speaker 2: for example, when we used to go in for scopes
20:08
Speaker 2: or biopsies in Great Ormond Street, they would always say
20:11
Speaker 2: he cannot be sedated because he fights the sedation so much.
20:14
Speaker 2: He would have to be put under because he just
20:17
Speaker 2: didn't like being sedated, and it would be the nurse
20:21
Speaker 2: would be come running out as if to say we
20:23
Speaker 2: need more sedation because he just wouldn't take it at all.
20:28
Speaker 2: And things like with blood tests he would from a
20:32
Speaker 2: young age he would just walk in and be like,
20:34
Speaker 2: there's my arm, you know, or be like because my
20:38
Speaker 2: mum is a phlebotomist, and she would always say, because
20:43
Speaker 2: that's a good vein, Ki, that's a good vein. So
20:45
Speaker 2: we would walk in and be like my nanny said,
20:47
Speaker 2: that's a good fuss. It just it'd be like, that's okay.
20:50
Speaker 2: So then that always used to sort of soften the
20:53
Speaker 2: blow a little bit. He yeah, he has got a
20:59
Speaker 2: real high time tolerance, and he will always try and
21:02
Speaker 2: cover things up because he doesn't want to go to
21:03
Speaker 2: hospital or he doesn't want to go to the doctors.
21:06
Speaker 2: He'll be like, it's absolutely fine. But I sort of
21:10
Speaker 2: can tell. He gets quite pale with drawn, he drinks
21:15
Speaker 2: a lot more, so I sort of can tell when
21:20
Speaker 2: the signs are there. And as I said, the last
21:24
Speaker 2: couple of years touched wood. He you know, has got
21:30
Speaker 2: the common cold and seems to have gotten over it
21:34
Speaker 2: quite quickly. But I would say all through like his
21:39
Speaker 2: high school and all school, really he really suffered. And
21:43
Speaker 2: it would be quite often he would have to go
21:45
Speaker 2: in and be put on antibiotics because it would have
21:47
Speaker 2: gone straight to his stomach. He was just so susceptible
21:52
Speaker 2: to colitis. He was on a metrosol for quite a
21:57
Speaker 2: long time. Like we weaned him off it, I think
22:00
Speaker 2: a couple of years ago, just to sort of soften
22:03
Speaker 2: the lining of the stomach because he's just his stomach
22:06
Speaker 2: is just so sensitive. Yeah, but I do think you know,
22:13
Speaker 2: as you say, as you get older, the eighteen to
22:17
Speaker 2: twenty five mark, is developing your independence. How you're going
22:22
Speaker 2: to manage it. Do you need you know, do you
22:24
Speaker 2: need other people to help you manage it? Or can
22:27
Speaker 2: you manage it on your own? And I think communication
22:30
Speaker 2: and having them conversations can be quite you know, quite
22:35
Speaker 2: challenging sometimes very yeah.
22:38
Speaker 1: Very And I think also as well as your independence
22:41
Speaker 1: and whatnot, you're also starting potentially a career at at
22:45
Speaker 1: that age as well, you know, maybe university or just
22:49
Speaker 1: finishing up studies and this, that and the other. So
22:52
Speaker 1: you've got you know, it's a tricky age. I think
22:55
Speaker 1: for everybody, you know, regardless of you know, whether you're
22:59
Speaker 1: absolutely fine or have any conditions at all. But I
23:01
Speaker 1: think for someone with hirshbrums, I think that is that's
23:06
Speaker 1: a potentially quite tricky age.
23:10
Speaker 2: Absolutely. And I think if you've got that, if you've
23:13
Speaker 2: had the the care around you. And I was always
23:19
Speaker 2: very good at communicating with Kaite and expect I've never
23:24
Speaker 2: hid anything from him, you know, even if it felt
23:27
Speaker 2: like it was quite scary, I would explain it to him.
23:31
Speaker 2: For example, his scars were always his superhero scars because
23:35
Speaker 2: he got them fighting sharks when it's little, you know,
23:37
Speaker 2: things like that, until we got older, you know, because
23:40
Speaker 2: it'd be like, Mummy, what's some scars. So I would
23:43
Speaker 2: explain it just you know, as if he was a
23:45
Speaker 2: superhero until he was, you know, at the age where
23:47
Speaker 2: I could explain it to him about his stomach and
23:52
Speaker 2: what was going on. But I just think you have
23:57
Speaker 2: to prepare them for in dependence and obviously, you know,
24:02
Speaker 2: if they're going to university, if they're starting a career,
24:04
Speaker 2: and you know what, how they're going forward in life,
24:10
Speaker 2: how they're going to manage it by themselves. With Kaile,
24:15
Speaker 2: because his autism is quite affects him quite socially. He
24:22
Speaker 2: is actually the last couple of weeks just transitioning into
24:27
Speaker 2: supported accommodation, purely because I have been his main care for,
24:33
Speaker 2: you know, since he obviously since he's been born. But
24:37
Speaker 2: he needs to start developing that independence for not only
24:40
Speaker 2: his development, but obviously you know, his stomach issues and
24:44
Speaker 2: things like that, and so we're going through a massive transition.
24:47
Speaker 2: At the moment of him going into supported accommodation, the
24:52
Speaker 2: next thing would be getting a job, employment and things
24:56
Speaker 2: like that, just so that he can I don't want
24:59
Speaker 2: him to miss out because he's obviously had this unfortunate
25:02
Speaker 2: start in life. I've always been quite a big, big
25:06
Speaker 2: advocate of he has exactly the same you know, whatever
25:10
Speaker 2: he eats, wheat eat, you know, things like that. Just
25:13
Speaker 2: never wanted him to feel different. So I'm always trying
25:19
Speaker 2: to strive for him to have exactly the same experiences.
25:25
Speaker 2: But it's just obviously managing that. The hirshbrungs really because
25:31
Speaker 2: people say, once you have the operation, it's all fine.
25:37
Speaker 2: It drives me crazy when people say that. I think,
25:40
Speaker 2: come and live my life. Right.
25:44
Speaker 1: Yeah, I mean, for the for the very few percent,
25:48
Speaker 1: as you said earlier on for the very I mean,
25:52
Speaker 1: I have interviewed a few people that they have they
25:55
Speaker 1: have a procedure, they have a sorry I pull through
25:58
Speaker 1: very early on, and then apart from a couple of
26:01
Speaker 1: stomach aches, everything's fy, I mean, lucky, then fantastic, that's
26:06
Speaker 1: very very good. However, it's really not the case for
26:12
Speaker 1: a lot of so I think people kind of assuming
26:16
Speaker 1: that that's the case, and that it's quote unquote a
26:20
Speaker 1: childhood condition when it's not. It's a lifelong condition. I
26:25
Speaker 1: think is a dangerous assumption to.
26:28
Speaker 2: Make absolutely, and some people don't get you know, I've
26:31
Speaker 2: heard of a couple of people that haven't had it
26:33
Speaker 2: picked up until adulthood. They suffered their whole childhood and
26:37
Speaker 2: they haven't had it picked up. They've just been put
26:39
Speaker 2: it down to you know, chronic constipation or you know,
26:46
Speaker 2: just lots of other different things. But then actually when
26:48
Speaker 2: they've had the biopsies usually higher up, that they have
26:54
Speaker 2: found something. I honestly, I don't know how people manage.
27:01
Speaker 2: And as you say, you know, great for the people
27:03
Speaker 2: that don't have they've had the operation and they've gone
27:06
Speaker 2: through and lived, you know, a relatively normal life, but
27:11
Speaker 2: it's been very real the last you know, nineteen twenty years.
27:17
Speaker 2: It's you know, usually the first thing I think of
27:20
Speaker 2: that when I get you know, has he had his medication,
27:23
Speaker 2: has he been to the toilet, has he you know,
27:25
Speaker 2: is he aware that you know, maybe he hasn't been
27:28
Speaker 2: a toilet for a couple of days, and he needs
27:30
Speaker 2: to make sure that he's going or quite a big thing.
27:34
Speaker 2: I think when they turn sort of sixteen seventeen is,
27:40
Speaker 2: without being too descriptive, you need to look and make
27:43
Speaker 2: sure there's no blood, there's no you know, things like that,
27:46
Speaker 2: or it's not diarrhea. And that was a bit of
27:50
Speaker 2: a hurdle to get over because he was like, oh,
27:52
Speaker 2: I'm not doing that, mum, and I was like, unfortunately,
27:54
Speaker 2: we have to do that. You know. It's just part
27:57
Speaker 2: of the condition that we do need to do these
27:59
Speaker 2: things because that can tell us a lot. So yeah,
28:05
Speaker 2: I think that when he got older was one of
28:08
Speaker 2: the challenges. Definitely. We did. I did actually say to you,
28:13
Speaker 2: we did have genetic testing when he was I want
28:20
Speaker 2: to say he was about four or five, and it
28:24
Speaker 2: comes back as just totally sporadic. So it's called a
28:27
Speaker 2: class as a sporadic condition, a sporadic what's the word
28:34
Speaker 2: I'm looking for it. It was just a sporadic thing
28:38
Speaker 2: that happened in his So it wasn't neither myself or
28:46
Speaker 2: my husband at the time was a carrier. It was
28:49
Speaker 2: just a sporadic thing that happened. And they basically described
28:55
Speaker 2: it to kaya as an odd pair of socks, and
28:57
Speaker 2: that's how we've described it all through his life. You've
29:00
Speaker 2: just got an old pair of socks, and we all
29:03
Speaker 2: love an odd pair of socks, let's face it.
29:06
Speaker 3: Yeah, that's yeah, I mean that's it staggers me really,
29:11
Speaker 3: the amounts of people like k and like myself who
29:16
Speaker 3: have no family history whatsoever.
29:18
Speaker 1: Yeah, and just you know, you're the one in five thousand,
29:23
Speaker 1: and it's just that's just it like that, there really
29:26
Speaker 1: isn't I guess kind of going back to what you
29:30
Speaker 1: said previously about the sort of anger about the foods
29:34
Speaker 1: he couldn't eat and this, that and the other. I know,
29:36
Speaker 1: one of my issues was sort of that anger of going,
29:39
Speaker 1: well why me, you know why?
29:42
Speaker 2: Why?
29:42
Speaker 1: Why am I the one who got it?
29:44
Speaker 3: You know why?
29:46
Speaker 1: And nobody can answer it. I think that's the real frustration.
29:50
Speaker 1: I mean, even through genetic tasting, still nobody can kind
29:53
Speaker 1: of go, oh it was, it's come from here, and
29:56
Speaker 1: it came from you know, this side and this person
29:59
Speaker 1: and then it passed down them through you know, nobody
30:02
Speaker 1: can explain it. I think that's just it's frustrating.
30:05
Speaker 2: It's so frustrating. And I went to that appointment thinking
30:09
Speaker 2: that they was going to have all my answers, and
30:14
Speaker 2: when she said it's just sporadic, it just happened, and
30:17
Speaker 2: I was like, I just couldn't. It took me a
30:19
Speaker 2: while to accept it because I was expecting her to say, okay, well,
30:24
Speaker 2: you know, even myself or my husband was the carrier,
30:29
Speaker 2: or it's come from X y Z. But she couldn't
30:32
Speaker 2: really give us a lot of information. All that the
30:37
Speaker 2: fact that if Kai ever had children, they obviously would
30:41
Speaker 2: be more susceptible to having it, they would have a
30:43
Speaker 2: higher percentage, and then it would obviously move down. And
30:49
Speaker 2: even with me, because Kai was my first child, I
30:54
Speaker 2: was worried about other children having hershprungs because also that's
30:58
Speaker 2: quite common as well, isn't it. And she couldn't give
31:05
Speaker 2: me an answer. She just gave me percentages that yes,
31:08
Speaker 2: you are going to have a higher chance of having
31:10
Speaker 2: another child with her sprums. I had two girls after Kai,
31:16
Speaker 2: and thankfully they didn't have They didn't have any issues
31:20
Speaker 2: at all. That was one of the first things I
31:23
Speaker 2: said to my WHI was like, please just make sure
31:26
Speaker 2: they I don't know, please, that is the first thing
31:31
Speaker 2: I need to know. But yeah, they just gave us
31:35
Speaker 2: percentages and just said kai, you've got an odd pair
31:37
Speaker 2: of socks, and that's the way we've gone through life
31:40
Speaker 2: and said, Okay, we've got an old pair of socks.
31:43
Speaker 2: We can deal with that. But it is quite frustrating
31:47
Speaker 2: because again, you are the one in five thousand and
31:50
Speaker 2: it is I went through a few years of being
31:55
Speaker 2: why my baby, why my child? You know what? What
31:58
Speaker 2: have I done wrong? Was it something thing I've done
32:00
Speaker 2: in pregnancy? Was it something? And it's just it's nothing
32:04
Speaker 2: that you could It's physically out of your hands, you know,
32:07
Speaker 2: at the end of the day, it's physiologically it's just
32:10
Speaker 2: the makeup, isn't it. And it's just unfortunately a genetic bitch.
32:16
Speaker 2: I suppose that's happened, and you just have to deal
32:20
Speaker 2: with it. And as my mum used to say, although
32:24
Speaker 2: it has been hard and it has been difficult, that
32:28
Speaker 2: there are worse things and it's challenging. It's hard, and
32:34
Speaker 2: there have been days where you know, I've just physically
32:41
Speaker 2: can't do this, but you know, at the end of
32:46
Speaker 2: the day, it could be a lot worse. So you
32:50
Speaker 2: just have to be grateful and thankful and that you
32:54
Speaker 2: know you can manage it. But yeah, it's not to
32:59
Speaker 2: say that you don't you know when he has been
33:03
Speaker 2: ill very poorly. I think I took it very badly
33:10
Speaker 2: and I was so when he first was transferred ober
33:16
Speaker 2: to Lewisham. He was really poorly when he was only
33:21
Speaker 2: a few days old. And I think one of the
33:26
Speaker 2: things that sticks with me is usually if you go
33:29
Speaker 2: into a hospital and you say, oh, they're going to
33:33
Speaker 2: be okay, They're just going to be given some medicine,
33:35
Speaker 2: they'll be okay, and usually the nurse of doctor be like, absolutely,
33:38
Speaker 2: that's fine. And I think on two occasions, I think
33:46
Speaker 2: myself or my husband at the time, said you know
33:49
Speaker 2: he is going to be okay, and you've had the
33:53
Speaker 2: response of you know, your baby's really poorly. You know,
33:56
Speaker 2: we're going to do the best we can. They couldn't
33:58
Speaker 2: give you an answer, and I think that has traumatized me,
34:03
Speaker 2: and it does it would do, and I think that's
34:09
Speaker 2: where I became like a complete I did molly coddle
34:14
Speaker 2: him quite a lot in the first few years, and
34:17
Speaker 2: that's expected, you know, you do because you obviously you're
34:21
Speaker 2: so worried. I mean, he would only be allowed to
34:24
Speaker 2: drink bottled water, and I used to check his temperature
34:28
Speaker 2: several times a day because I was so scared of
34:32
Speaker 2: him becoming unwell. And I think you hear them words
34:36
Speaker 2: and you just think, Okay, this is serious, but it's
34:45
Speaker 2: just been It's been a change, definitely, absolutely. I think
34:52
Speaker 2: going through the years, some things have got easier, but
34:57
Speaker 2: some things are also still quite the same. Know, you
35:00
Speaker 2: still have to, you know, manage the condition. He's still medicated,
35:08
Speaker 2: but I'm hoping that, you know, it's always going to
35:14
Speaker 2: be like that, but with some extra support he will
35:18
Speaker 2: be able to manage it a bit more himself, because
35:21
Speaker 2: it's difficult. You can either go through life as you say,
35:24
Speaker 2: and just manage it and maybe I don't know, have
35:28
Speaker 2: your stomach ache as you say, or it's a constant
35:32
Speaker 2: thing that you have to be aware of.
35:36
Speaker 1: Yeah, yeah, you're right, and it's and it's so difficult
35:40
Speaker 1: to give an answer and give that kind of you know,
35:46
Speaker 1: this is going to be like this when you get
35:48
Speaker 1: to twenty It's going to be like this when you
35:50
Speaker 1: get to twenty five. Because everybody is different and everybody
35:55
Speaker 1: reacts in different ways. And I think for me, it's
36:01
Speaker 1: just kind of one of the reasons they're doing this
36:04
Speaker 1: is just to kind of get more stories out there,
36:06
Speaker 1: so you just have more options as to what life
36:09
Speaker 1: may be like. But we can't say what it will be.
36:13
Speaker 2: Like because there's so many different types, you know, you
36:17
Speaker 2: short segment, long segment, you know, total, you know, it
36:23
Speaker 2: bearies so much that obviously you can't say what it's
36:26
Speaker 2: going to be like. But I think if you can
36:31
Speaker 2: nail what the care, if you can nail the care,
36:36
Speaker 2: I think it does tend to get easier. I mean,
36:41
Speaker 2: it's just natural for me now, you know, It's just
36:45
Speaker 2: one of them things that I always think about that
36:47
Speaker 2: I've always had to think about. I think it's going
36:49
Speaker 2: to be harder for me to actually hand over to
36:54
Speaker 2: another person because I'm what do I do? This is
36:59
Speaker 2: what I've done on my life, you know for the
37:01
Speaker 2: last twenty years. It is care for him and make
37:04
Speaker 2: sure that everything and even you know, things are appointments
37:06
Speaker 2: and things like that. I don't, I honestly don't know
37:09
Speaker 2: what I'm going to do with myself, but it's I
37:13
Speaker 2: suppose that's part of motherhood as well. You have to
37:15
Speaker 2: let them go. That's what I really wanted to I
37:18
Speaker 2: really needed him to start developing independence because he does
37:23
Speaker 2: rely so much on me, not just because of the hirshprungs,
37:27
Speaker 2: but because of what things like the autism and things
37:30
Speaker 2: like that. He does rely so much on me. He
37:33
Speaker 2: does need to start developing his own you know, care
37:37
Speaker 2: skills and things like that, and he's independent. But again,
37:42
Speaker 2: you know, it's it's going to be hard, but you
37:45
Speaker 2: have to let them so as you just have to
37:47
Speaker 2: let them go, don't you.
37:50
Speaker 1: I think so. I mean, I wouldn't know it from
37:54
Speaker 1: a parental point of view, but it just that's what
37:57
Speaker 1: it sounds like to me that it's I think it's
38:00
Speaker 1: tough for any parent to you know, where the child
38:03
Speaker 1: boos out or whatever. But I think especially if you've
38:08
Speaker 1: been so heavily involved in all their care, all of
38:12
Speaker 1: their appointments, checking you know, everything, you know, making sure
38:18
Speaker 1: they're okay with this that the other, and then to
38:21
Speaker 1: sort of have to go right, okay now they need
38:25
Speaker 1: that semi independence, but sort of also knowing that you're.
38:29
Speaker 2: There as well, absolutely.
38:31
Speaker 1: You know, so it's not like totally throw them all
38:35
Speaker 1: out and they're you know, absolutely themselves. They know you're
38:40
Speaker 1: you know, he knows you're there, and you know, video's
38:43
Speaker 1: questions answering I'm sure you know, you'll be absolutely there,
38:49
Speaker 1: but it's yeah, it's tough.
38:51
Speaker 2: It is so tough. He It's like, for example, the
38:54
Speaker 2: last few weeks, we've had so many appointments, but we've
38:58
Speaker 2: gone from going from great Ormond Street to having you know,
39:03
Speaker 2: three months, six months, you know, six weeks check up
39:06
Speaker 2: the type of thing, or I can call and I
39:10
Speaker 2: could speak to a member of the team, the gastro team,
39:13
Speaker 2: to now me having to phone people constantly to try
39:18
Speaker 2: and get something around him so he's got some type
39:21
Speaker 2: of support around him. It is so difficult. The adult
39:26
Speaker 2: care is just yeah, I'm quite let down by it
39:31
Speaker 2: really that I'm having to constantly ring people and he
39:35
Speaker 2: from being discharged from great Ormond Street. We waited a
39:39
Speaker 2: year and a half for that appointment, and he has
39:46
Speaker 2: like a local consultant, but then he also has like
39:51
Speaker 2: a specialist if he needs to go and obviously see them.
39:57
Speaker 2: But again to get that was we've waited year and
40:00
Speaker 2: a half. It's been crazy.
40:03
Speaker 1: Yeah, yeah, and it's unfortunately not an uncommon story from
40:09
Speaker 1: you know, especially that that gap between you know, when
40:13
Speaker 1: you leave great Ormond Street or any children's hospital and
40:17
Speaker 1: then it's into the big world, and and that's kind
40:19
Speaker 1: of it. There's no there's no smaller transition into a
40:23
Speaker 1: sort of a you know, teen hospital whatever and then onto,
40:29
Speaker 1: you know, and into sort of functioning on your own.
40:33
Speaker 1: And I think and again obviously there's funding and this
40:37
Speaker 1: and that and the other, and then yeah, that's obviously
40:39
Speaker 1: a massive issue, but it's it's where, it's what what
40:42
Speaker 1: happens in those those twenties, isn't it those early twenties
40:47
Speaker 1: late teens. And I think that's a that's a really
40:50
Speaker 1: difficult one because you go from almost your every need
40:54
Speaker 1: being met to nothing. There's nothing in between.
40:58
Speaker 2: Absolutely, yeah, that's exactly it. There's nothing in between, and
41:02
Speaker 2: that is where you have to try and pick up
41:04
Speaker 2: and manage and do the best that you can. But
41:08
Speaker 2: it's scary, it really is. It really is scary. But yeah,
41:16
Speaker 2: so that is where we're up to at the moment.
41:21
Speaker 2: So we're embarking on a new journey. Hopefully it will
41:25
Speaker 2: be smooth as it.
41:27
Speaker 1: Can be, absolutely, and it's been a of a journey
41:31
Speaker 1: so far. But just as we as we wrap up
41:35
Speaker 1: the future, I know we talked a little bit about,
41:37
Speaker 1: you know, the the sort of in between care that
41:41
Speaker 1: you know they'll be and that he's moving into supports accommodation.
41:46
Speaker 1: But I guess so you can't see into the future
41:50
Speaker 1: with the crystal ball as such. But what do you
41:52
Speaker 1: hope for Kai's future?
41:55
Speaker 2: He is a big creative writer, and I hope that
42:01
Speaker 2: he will go into something. I mean, he's so like
42:05
Speaker 2: he emails quite often production companies of ITV and BBC
42:10
Speaker 2: because he doesn't have that perception, and I love that
42:12
Speaker 2: he has no filter. He will email them and ask
42:16
Speaker 2: for funding for his films like it's fantastic. Absolutely, don't ask,
42:21
Speaker 2: you don't get exactly. I'm like, son, I'm so proud
42:25
Speaker 2: of you. If you don't ask, you don't get. And
42:28
Speaker 2: he went to Elstree Studios for an interview for an
42:32
Speaker 2: apprenticeship because he was emailing people. So yeah, I do
42:37
Speaker 2: hope that he can go into his field of what
42:40
Speaker 2: he loves. I mean, he's obsessed with things like Titanic
42:43
Speaker 2: and Big Ben. He can talk all day long about
42:46
Speaker 2: things like that, and I hope that he will go
42:51
Speaker 2: into that sort of line. He will, he will be
42:54
Speaker 2: able to manage it. I'm quite sure he will, just
42:58
Speaker 2: probably be he will need to be more aware of
43:04
Speaker 2: things and just to you know, with dietary needs and
43:09
Speaker 2: if he's feeling a little bit off and things like that.
43:11
Speaker 2: He just needs to be more aware because you know,
43:15
Speaker 2: I'm not going to be behind him every step of
43:18
Speaker 2: the way, you know, when he's got a job and
43:20
Speaker 2: things like that. So that's the most important thing I
43:22
Speaker 2: think at the moment is for him to find employment
43:27
Speaker 2: and be settled in his new you know, when he's moving.
43:33
Speaker 2: So yeah, my hope for the future for him is
43:36
Speaker 2: to really get into his line of creative writing, because
43:43
Speaker 2: that's all he does is sit at his laptop and
43:45
Speaker 2: he will write. That's his thing. You know, if he's upset,
43:49
Speaker 2: he's happy, or he just needs a little bit of
43:51
Speaker 2: a lone time, he will just write. So yeah, I hope.
43:55
Speaker 2: So I hope that he will go into that type
43:58
Speaker 2: of thing. I'm sure he will. I mean who I mean,
44:01
Speaker 2: he could be email mailing Steven Spielberg next.
44:04
Speaker 1: I don't know. Probably, Well, let's hope. So I'd just
44:10
Speaker 1: just say thank you so much for coming on and
44:13
Speaker 1: sharing what's been an amazing story, and I wish well
44:18
Speaker 1: you and and Kai all the very very best for
44:21
Speaker 1: the future.
44:22
Speaker 2: No, thank you, it's been really really interesting to speak
44:26
Speaker 2: to you, and it's been nice to sort of have,
44:28
Speaker 2: you know, the conversation with you because obviously yourself you're
44:31
Speaker 2: older as well, you know briefly what we spoke about before. Yeah,
44:36
Speaker 2: it's been really lovely to chat. Thank you so much,
44:40
Speaker 2: my pleasure.
44:43
Speaker 1: Thank you for listening and being part of this growing community.
44:46
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
44:49
Speaker 1: leave a review, and share it with someone who might
44:52
Speaker 1: need it. You can connect with us on social media
44:55
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's
44:59
Speaker 1: pot Cost. See you next week.