Latest / Tom's Hirschsprung's Podcast / Episode 111 - With Kayleigh Acquah

Transcript

Episode 111 - With Kayleigh Acquah · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
0:12
Speaker 1: just want to understand more, this podcast is for you.
0:15
Speaker 1: Each episode, we will explore real stories and honest conversations
0:19
Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello, and welcome to episode one hundred and
0:48
Speaker 1: eleven of Tom's Hirshbrung's Podcast. I'm very glad to be
0:53
Speaker 1: joined this afternoon by Kaylee. Kaylee, welcome to the podcast.
0:57
Speaker 2: Thank you for having me, No.
0:59
Speaker 1: Thanks so much for coming on. We have some really
1:02
Speaker 1: interesting topics to discuss, all about your son Mika and
1:07
Speaker 1: his his journey thus far with hirsh Bronx. But I
1:12
Speaker 1: guess we'll kind of start where we where we usually do,
1:17
Speaker 1: kind of from the beginning, if if you want to
1:19
Speaker 1: take us from there.
1:21
Speaker 2: Yeah, so pregnancy went perfectly fine. You know, pregnancy tyrant,
1:31
Speaker 2: so you know the usual pregnancy symptoms that you get.
1:37
Speaker 2: Micah was a little bit slow growing in the womb
1:41
Speaker 2: and then he kind of caught up, and then towards
1:46
Speaker 2: the end there was a few reduced movements, so I
1:49
Speaker 2: went into hospital to be induced to obviously for them
1:52
Speaker 2: to bring labor on, and I was in the hospital
1:57
Speaker 2: for a few days. Labor went fine, everything was fine
2:00
Speaker 2: with him, and then when he was born, he had
2:04
Speaker 2: his face feed and slept I want to say, for
2:09
Speaker 2: seven hours straight, which is quite unusual for a newborn baby.
2:12
Speaker 2: Jill spawn. Yeah, so when I obviously slept alongside him,
2:19
Speaker 2: I'd just given birth. It was during co well like
2:22
Speaker 2: COVID time, so it was only me allowed to be
2:27
Speaker 2: with him, and obviously nurses would come in the room
2:30
Speaker 2: and whatnot, all midwives, but yeah, there was no other
2:34
Speaker 2: parents there over that night. It was just me, so
2:37
Speaker 2: obviously I'd just given birth, and I slept with him.
2:40
Speaker 2: He was asleep, I was asleep. And then they woke
2:42
Speaker 2: up the next morning and I was like, he's not
2:44
Speaker 2: woke up crying for feed. This is this is this
2:48
Speaker 2: is my fourth child, this is quite unusual. I've not
2:51
Speaker 2: experienced this before. So I quitted it. I was like,
2:57
Speaker 2: you know, he's not woke up to be fed, and
3:00
Speaker 2: he doesn't appear to be hungry, and so I was trying.
3:03
Speaker 2: I was trying to feed him just didn't didn't want
3:05
Speaker 2: to be fired at all, and he kept being sick.
3:09
Speaker 2: He kept bringing up mucus again. He was number four,
3:15
Speaker 2: so I kept raising it and was saying that this
3:18
Speaker 2: doesn't this doesn't appear to be right. I've never experienced
3:21
Speaker 2: this with my children before, and obviously hairsprings is quite
3:27
Speaker 2: a rare condition, so I don't think a lot of
3:31
Speaker 2: people would automatically go to, oh, something's not quite right
3:34
Speaker 2: here with this little one. So it was a lot
3:37
Speaker 2: of Oh, it will be mucus Almos told me from
3:38
Speaker 2: the amniotic fluid inside your womb, you know, we might
3:41
Speaker 2: just be really tired. Just just keep trying, just keep trying.
3:46
Speaker 2: But he hadn't gone to the toilet either, and we
3:51
Speaker 2: went home on a feeding plan. Even though I'd racy,
3:53
Speaker 2: I was a bit concerned. We went home on a
3:55
Speaker 2: feeding plan. He hadn't gone to the toilet still, and
4:00
Speaker 2: the vomitton just got worse and worse, to the point
4:04
Speaker 2: where we couldn't even lay in flat. He every time
4:08
Speaker 2: we'd lay in flat, he would like start to be
4:11
Speaker 2: sick mucus, but he'd be choking on the on the sick,
4:14
Speaker 2: and myself and Dad would be coming quite concerned at
4:18
Speaker 2: that point. We took it in shifts that night because
4:22
Speaker 2: we couldn't. It was in the middle of the night,
4:24
Speaker 2: so we took it in ships. We tried to call
4:26
Speaker 2: for help, but again there was an expectation that it
4:31
Speaker 2: was just mucus and his tummy and the midwife would
4:34
Speaker 2: be able to see him the next morning. Next morning,
4:38
Speaker 2: midwife came out and she was not best pleased. He
4:42
Speaker 2: was really poorly at this point, and he ended up
4:47
Speaker 2: back a hospital, still having gone to the toilet, was
4:52
Speaker 2: still being sick. Yeah, and then from that point it
4:59
Speaker 2: kind of gets quick and blary.
5:02
Speaker 1: Aren't scary, I can imagine. So it's the thing I
5:09
Speaker 1: tend to just find when talking to people, talking to mothers,
5:13
Speaker 1: especially that everything happens so fast, but it's so many
5:17
Speaker 1: things that happen in such a short space of time
5:21
Speaker 1: that they tend to just sort of blur, and then
5:24
Speaker 1: when you revisit them five years I think, in this case,
5:28
Speaker 1: five years down the line, five six years down the line,
5:31
Speaker 1: I actually think, well, actually, loads of things have happened
5:34
Speaker 1: and it maybe doesn't quite register at the time, but
5:37
Speaker 1: it's everything that you're bringing up there sounds like absolute
5:42
Speaker 1: classic hirshbrucks, like the bile, the vomiting, the lack of maconium.
5:51
Speaker 1: Everything there is kind of it's completely classic Hirshbrungs. But
5:58
Speaker 1: like you said, it's so rare that again, like a
6:02
Speaker 1: lot of people have talked to you're told, oh, they're
6:05
Speaker 1: just a slow feeder. Oh oh, it's just you know,
6:09
Speaker 1: maybe they were born a bit quick, so it might
6:12
Speaker 1: just be mucus, it might just be this, and I
6:15
Speaker 1: guess I know they have to rule everything out first,
6:18
Speaker 1: But at what point was sort of hirsh Brungs mentioned.
6:26
Speaker 2: I want to say that late that evening. So we
6:31
Speaker 2: were at our local hospital by where we live and
6:36
Speaker 2: were outside of we live outside just outside of Liverpool,
6:42
Speaker 2: and he was taken back onto the maternity ward. Again.
6:46
Speaker 2: When I went back onto that ward, nobody kind of
6:48
Speaker 2: talk it seriously. I kept saying, he's not feeding, he's
6:54
Speaker 2: not feeding, like he's still not gone to the toilet.
6:57
Speaker 2: I'm getting really concerned. And I was asked to give him.
7:02
Speaker 2: I was trying to feed him myself and I was
7:05
Speaker 2: told to give him formula. Again, haven't had more than
7:11
Speaker 2: one child. I didn't want to do that, and I
7:15
Speaker 2: was confident enough to say, no, I don't that's not
7:19
Speaker 2: how he's going to be fed. But then I was
7:22
Speaker 2: persuaded to try because at this point it was neil.
7:25
Speaker 2: It was coming up to I think he must have
7:27
Speaker 2: been about eighteen nineteen hours old, and he just wasn't
7:33
Speaker 2: able to take a substantial feed at all. So I
7:36
Speaker 2: did give in and I got a couple of meals
7:38
Speaker 2: inside him, and that feed literally meant that They then
7:44
Speaker 2: started taking things really serious because as soon as I
7:47
Speaker 2: hit him, as Tommy just went dumb and he looked
7:50
Speaker 2: like he was pregnant. As Tommy just really really swelled
7:59
Speaker 2: and he had this rash, an umbilical rash, so it
8:03
Speaker 2: was like this really prominent purple rash up the it
8:08
Speaker 2: was in like a line up as Tommy and I
8:12
Speaker 2: kept saying that that doesn't appear. I don't. I don't
8:14
Speaker 2: like the look of that. That's that's quite concerning to
8:18
Speaker 2: me as well. At this point, they got a senior
8:24
Speaker 2: near natal doctor in to come and check on him,
8:28
Speaker 2: and very quickly Micah was X rays and G tube.
8:38
Speaker 2: He ended loop back in neon natal. He was on
8:40
Speaker 2: two to one care and again because it was COVID
8:44
Speaker 2: and we've been allowed out of the hospital and come
8:47
Speaker 2: back in. He had to be segregated from all the
8:49
Speaker 2: neonatal babies because obviously COVID and you don't want to
8:54
Speaker 2: pass in as neon neonatal babies so well to anybody,
8:58
Speaker 2: was especially a premature baby, So he was segregated from
9:02
Speaker 2: a ward from the neonate unit. He was pulled on
9:05
Speaker 2: two to long cas in a room in his own
9:08
Speaker 2: little isolation room. And at that point they started to
9:13
Speaker 2: leage with older Hay and they discussed Micah with the
9:20
Speaker 2: sage and at older Hay and they came to me
9:24
Speaker 2: and Dad and said, we think it could be a
9:28
Speaker 2: number of things. And that's when hashbrums came up. And
9:32
Speaker 2: I was like, what, like everybody, but what's that like?
9:38
Speaker 2: So they said cystic fibross as well. We were told
9:42
Speaker 2: it could have cistic fibrosus. But MICA's mixed race, so
9:45
Speaker 2: the likelihood of Micah having cistic fibros was even slimmered
9:49
Speaker 2: and you know, other children, because it's it's more prevalent
9:54
Speaker 2: in white children, just like sickle cell would be more
9:57
Speaker 2: likely to be prevalent in Micro's genes because he's mixed raced,
10:03
Speaker 2: he's less likely to have cystic fibrosus and you get
10:05
Speaker 2: sticky bowl with sticky assistic fibrosors which can block the bowl.
10:11
Speaker 2: So they were more convinced it would be a hairsprung
10:17
Speaker 2: just because of his genetic composion, I suppose, And they
10:26
Speaker 2: this has got to be into the night now, like
10:28
Speaker 2: it's quite late. The surgeons have clocked after going home,
10:33
Speaker 2: so he was he was on like I think it
10:36
Speaker 2: was half hour obs constantly being observed. If he had
10:41
Speaker 2: us took a turn for the west. They were hading
10:43
Speaker 2: blue ready to be blue lighted straight over to Older Hay.
10:47
Speaker 2: He was really really poorly. They were treating them for sepsis. Again.
10:52
Speaker 2: This purple rash on the tummy was a side effect
10:55
Speaker 2: of a symptom of sepsis. And he was okay throughout
11:02
Speaker 2: the night. He was on antibiotics nil by mouth. At
11:07
Speaker 2: this point we could not feed him ENNGI tubed cannialers
11:12
Speaker 2: and whis everywhere. It was quite scary and the plan
11:17
Speaker 2: was to move him to Older Hey the next morning,
11:18
Speaker 2: which went ahead. We went over to Older Hay. We
11:25
Speaker 2: met with Miss Olmand, absolutely fantastic surgeon. I owe everything
11:30
Speaker 2: I absolutely adore here she is at it. I just
11:34
Speaker 2: I love the bones of Bye. She's amazing. We met
11:38
Speaker 2: with Miss Almond and she was wanting to run some tests,
11:45
Speaker 2: but by the time we got admitted and stuff, the
11:48
Speaker 2: surgeries were starting to even though we went over quite early.
11:51
Speaker 2: But you know, with the admittance and observations and things
11:54
Speaker 2: today he's just moving and moving and moving. So that
12:01
Speaker 2: the what they wanted to do is when they went inside,
12:04
Speaker 2: they operated somewhere because they wanted the labs to be open,
12:06
Speaker 2: to be able to get immediate sell results because he
12:11
Speaker 2: was presenting as a child who had long segments hair spruns.
12:18
Speaker 2: So the plan was to watch on water the night
12:20
Speaker 2: and keep an eye and keep the antibiotics going. I
12:21
Speaker 2: think at this point he was on three different types
12:23
Speaker 2: of antibotics ivy hourly, half hour hourly ARPS, and we
12:29
Speaker 2: had doctors coming in and out of the room all night.
12:32
Speaker 2: Absolutely no sleep and mind at this point. I'm not
12:34
Speaker 2: even forty eight hours post birth, so it was horrendous.
12:41
Speaker 2: I wanted to feed my child, I wanted the rest
12:43
Speaker 2: feed my child, and I couldn't, so I was having
12:46
Speaker 2: to take myself away to expressed and I just felt
12:53
Speaker 2: like a mum who's helpless and the only thing I
12:56
Speaker 2: could do for him was express milk. So that's what
12:58
Speaker 2: I did, was just expressing, express and expressing because I
13:02
Speaker 2: knew that would be beneficial for him when he could
13:04
Speaker 2: finally have food. And I just remember crying a lot. Yeah,
13:13
Speaker 2: it was, it was. It was really scary that he's
13:16
Speaker 2: done a contrast test that evening, and it was at
13:20
Speaker 2: that point we were we were told, yeah, this is
13:22
Speaker 2: without without even having sagery. I think it was they
13:28
Speaker 2: took him in the nighttime and they've done the contrast
13:31
Speaker 2: test ups up as bottom with the contrast to see
13:35
Speaker 2: how far it would fly, and it just wasn't moving
13:38
Speaker 2: as bow was completely blocked. And it was at that
13:43
Speaker 2: point they said, look, we are like, we can't say
13:47
Speaker 2: one hundred percent, but we are pretty certain this is
13:50
Speaker 2: a child with hair Strong's disease. So then again watching
13:56
Speaker 2: water the night hourly, half hour hourly, and the Solomon
14:01
Speaker 2: came back the next morning this rash and I told
14:03
Speaker 2: me he was getting worse, and she said, no, I'm
14:06
Speaker 2: scheduled to surgery and took them, took them to surgery.
14:10
Speaker 2: That to me was probably the hardest, one of the
14:14
Speaker 2: hardest parts, and getting off that talking about it, it
14:20
Speaker 2: was the hardest. I I couldn't take him into theater.
14:24
Speaker 2: I just broke down outside the theater. I had to
14:26
Speaker 2: get Dad to do it, and a porter had to
14:29
Speaker 2: I'm forever grateful for this porter. You could see how
14:33
Speaker 2: distressed I was, and he stayed outside the room with me.
14:37
Speaker 2: I literally my whole body literally hit the floor. I
14:40
Speaker 2: just because I just signed forms that said how dangerous
14:45
Speaker 2: it was, and I'd only just met him. I only
14:48
Speaker 2: add them two days, not even there, and he was
14:54
Speaker 2: in theater for a really long time. I think it
14:57
Speaker 2: was about six seven hours. His bow was blocked. He
15:03
Speaker 2: came back with the stona and iliostomy. His blazzer wasn't
15:10
Speaker 2: emptying prior, so he wasn't going to the toilet because
15:14
Speaker 2: the pressure of his bow was stopping his bladder from
15:17
Speaker 2: empty and as well. But actually when they looked into it,
15:20
Speaker 2: it was just a pressure from his blood as well
15:22
Speaker 2: being so blocked. So his blood has been perfectly fine since.
15:28
Speaker 2: And yeah, then life as a stone and one started.
15:33
Speaker 1: Yeah, I think I ken. I mean, I've never been
15:38
Speaker 1: there myself, but I have spoken to many people when
15:44
Speaker 1: when your child goes into surgery, you know, something that
15:48
Speaker 1: forty eight hours before, or probably less than forty eight
15:51
Speaker 1: hours before, was not even a consideration of any proportion.
15:59
Speaker 1: And then suddenly you're having to do all of these
16:01
Speaker 1: things and this sort of complete whirlwind of emotion and
16:11
Speaker 1: just so many things that are going on. I to
16:15
Speaker 1: be it sounds perfectly normal that that would hit you
16:20
Speaker 1: in some way physically, you know, like you said, you know,
16:25
Speaker 1: body just kind of felt Narba just fell to the floor.
16:29
Speaker 1: I mean that that sounds to me like that's that's
16:31
Speaker 1: a normal reaction to what's happened, because it's it is trauma,
16:37
Speaker 1: isn't it. It's it's it's you know, you have gone
16:41
Speaker 1: through a traumatic experience and that is going to have
16:45
Speaker 1: a physical effect on your body.
16:48
Speaker 2: Yeah, but your body's already already tired because you've just
16:53
Speaker 2: given birth. You've carried a baby for nine months, You've
16:57
Speaker 2: given birth, which is really tired a woman to go through.
17:01
Speaker 2: Then you are hit with this and mind the first
17:05
Speaker 2: night that Mica came home, we didn't sleep because he
17:08
Speaker 2: was being sick, so we were sleep deprived, woody stricken,
17:14
Speaker 2: like it was just so it was such a hard time. Yeah,
17:23
Speaker 2: but it was confusing as well because we didn't know
17:25
Speaker 2: what Hirshbruns was and we kept getting told don't google,
17:30
Speaker 2: don't go on Google.
17:32
Speaker 1: They go though, Like I mean, did you?
17:36
Speaker 2: Oh yeah, I google exactly everything, even though you're told
17:41
Speaker 2: not to, Like, what's the first thing to do?
17:45
Speaker 1: You find out that your child potentially has this condition
17:49
Speaker 1: that nobody's ever heard of, so of course you want
17:52
Speaker 1: to know more.
17:54
Speaker 2: I think I probably learned more about Hirshbrungs's disease and
17:57
Speaker 2: the first a few days being told not to google
18:01
Speaker 2: because I was on Google a lot. Of course, you
18:04
Speaker 2: were like, you do I know?
18:06
Speaker 1: I know why they say it. I know that because
18:08
Speaker 1: I don't want you to scare yourself and read all
18:11
Speaker 1: the things that could possibly happen. It's like when you said,
18:14
Speaker 1: with signing the four, you know all that they have
18:17
Speaker 1: to legally, you know, list all the things that may
18:21
Speaker 1: potentially happen, and like when you google, you get you know,
18:26
Speaker 1: because with Hirsprungs there's so many different types and there's
18:30
Speaker 1: so many different like you mentioned there, they're testing for
18:33
Speaker 1: cystic fibrosis and all sorts. And I know why they
18:36
Speaker 1: tell you not to Google. But I'm sure everyone does
18:39
Speaker 1: it from.
18:40
Speaker 2: Everyone Googles, I'd be surprised if people don't be very surprised. Yeah, absolutely,
18:47
Speaker 2: I mean, as you said, it's it's not a good
18:50
Speaker 2: thing to do it, though we all do it, but
18:51
Speaker 2: it's not good because you will get worst case scenario.
18:56
Speaker 2: But yeah, I was order the impression that he was
18:59
Speaker 2: good to come back with a long segment diagnosis as well,
19:03
Speaker 2: So it was a worst case scenario. That's what we
19:08
Speaker 2: thought we were we were looking at because he was
19:10
Speaker 2: so symptomatic, but actually a short segment so you know,
19:17
Speaker 2: and that doesn't come without such challengers, don't get me wrong,
19:24
Speaker 2: but because obviously he was so symptomatic, it was the
19:27
Speaker 2: case of all my days, like this is horendous, this
19:31
Speaker 2: is what is it? You know, there's there's not a
19:35
Speaker 2: lot of people, I mean even today, we can go
19:37
Speaker 2: to an appointment with I don't know, just a medical
19:41
Speaker 2: a medical practitioner, doesn't any departments and also they've got
19:44
Speaker 2: any underlying medical conditions and he's like, he's got hairsprungs disease?
19:48
Speaker 2: What's that? And I'm now having to explain, well, hair
19:52
Speaker 2: springs is because you have you have to clear yourself
19:56
Speaker 2: up on it because there's so many people who just
19:58
Speaker 2: don't know what it is.
20:00
Speaker 1: Yeah, I get it. I mean I say, I get it.
20:02
Speaker 1: I've done that for thirty years when people going what
20:06
Speaker 1: on earth is that? But it's and and part of
20:10
Speaker 1: me is like, well, you know, as a doctor, you
20:12
Speaker 1: can't know everything about everything. I get that, but I
20:15
Speaker 1: guess that's probably still it's still the frustrating point where
20:18
Speaker 1: you go, okay, right, I have to explain it again
20:20
Speaker 1: and again and again and again and again, especially as
20:24
Speaker 1: it can be quite a complex.
20:26
Speaker 2: Explanation, yes, and how it presents deffinitely in each child
20:32
Speaker 2: as well. And you know, I've had doctors say, oh
20:38
Speaker 2: he's ADS, he's ADDS operation now, so you know you'll
20:42
Speaker 2: be fine. It's not the case. So you know, it's yeah,
20:49
Speaker 2: you kind of have to become a little bit thick
20:52
Speaker 2: skins and advocate for your your child. And obviously I
20:57
Speaker 2: shall know as you get older you start to advocate
21:00
Speaker 2: for yourself.
21:03
Speaker 3: But yeah, it's it was just it was an unknown
21:06
Speaker 3: world that didn't even though the condition existed, just didn't
21:12
Speaker 3: didn't have a clue.
21:15
Speaker 1: There's one thing that you did mention that I haven't
21:17
Speaker 1: heard before, which is the purple rash. I've never I've
21:21
Speaker 1: never come across that with anyone before. And he said
21:24
Speaker 1: that was linked to sepsis.
21:28
Speaker 2: So they thought that he potentially had sepsis, because children
21:33
Speaker 2: with sepsis can present with like a model y rash
21:37
Speaker 2: on the skin. So obviously we've got a really poorly
21:42
Speaker 2: child here. Coverall basis antibiotics, a broad spectrum, bought broad
21:47
Speaker 2: spectrum antibiotics, and yeah, so I think he. I think
21:54
Speaker 2: he when he was tested after say, as infection markers
21:59
Speaker 2: were great, So I don't I don't particularly know if
22:03
Speaker 2: he definitely had it or not, but he was treated
22:07
Speaker 2: as as though he did. I think he. I think
22:10
Speaker 2: he was definitely if he didn't have it, he was
22:14
Speaker 2: definitely on his way. He was definitely something going on
22:17
Speaker 2: because as infection markers were checked days after he'd been
22:22
Speaker 2: in the hospital to see whether it was and but
22:26
Speaker 2: at this point he's already been on antibiotics since he
22:29
Speaker 2: was admitted the first hospital. They because you go on
22:35
Speaker 2: a sepsis pathway and one of the first protocols is
22:39
Speaker 2: a broad spectrum antibiotic. It's not a case of let
22:44
Speaker 2: test and wait for a result, and then we'll treat.
22:47
Speaker 2: It's a case of wish our markers here, let's treat
22:52
Speaker 2: because we all know how dangerous sepsis can be.
22:57
Speaker 1: Yeah, No, definitely definitely have I've been there, had it.
23:01
Speaker 1: I know exactly, I know exactly. That's yeah, it can be.
23:06
Speaker 1: It can be very very yeah, very dangerous. Indeed, it's
23:11
Speaker 1: just something I've never heard before with the purple rash.
23:14
Speaker 1: So it's yeah, that's something. That's why I like doing this.
23:17
Speaker 1: I come across things that I hear different things every
23:20
Speaker 1: single time. It's like you said, you know, everybody's journey
23:23
Speaker 1: and everybody's story with Hirshbrungs is slightly different. And going
23:29
Speaker 1: back to to what you said about going to like
23:33
Speaker 1: GPS and whatnot and saying, oh, it's got Hirshprungs and
23:36
Speaker 1: then they say, oh, well you know he's he's a
23:38
Speaker 1: bit older now, he's surely got over that. It's that's
23:41
Speaker 1: just not that's just not the case.
23:43
Speaker 2: Is it. No, it's not. And I think it does
23:47
Speaker 2: an injustice for those who aren't over it, like put
23:52
Speaker 2: it in your marks. It's a lifelong condition. It's you're
23:57
Speaker 2: never just over it. And there's children out there that
24:01
Speaker 2: are by far waste than Micah. So you can't just
24:06
Speaker 2: blanket it as if you've had an operation and then
24:08
Speaker 2: it's it's done and dusted, because that's not the case.
24:13
Speaker 2: We fortunately are in a position now where MICA's stoma
24:17
Speaker 2: was reversed at eleven months old. It had to be reversed.
24:21
Speaker 2: We wanted to allow us bowel a little bit more
24:23
Speaker 2: time to rest after multiple procedures. I mean they all
24:31
Speaker 2: known by name and face and all the hay it
24:33
Speaker 2: was a little superstar. But so they wanted to allow
24:39
Speaker 2: him sometime to let his bowl rest and recuperate because
24:42
Speaker 2: as you'll you'll now having a lot of interventions and
24:46
Speaker 2: things like that, the bow swells. So we wanted to
24:50
Speaker 2: allow that time. But Micaeh was failing to thrive. So
24:54
Speaker 2: because he had an eyli asto me and he's got
24:55
Speaker 2: a fast transit, well he had a fast transit. Food
25:00
Speaker 2: just wasn't touch on the sides and he weren't ground.
25:02
Speaker 2: He was really small, wasn't gaining weight very well. The
25:07
Speaker 2: salts roll over the place. He was on all different
25:10
Speaker 2: medications and we got to a point where it was like,
25:13
Speaker 2: do you know what I think the best thing for
25:16
Speaker 2: him is to reverse the stomach and let's see how
25:18
Speaker 2: he does. So he had us pulled through procedure at
25:23
Speaker 2: eight weeks old. He then had he had Yeah, he
25:29
Speaker 2: had his pulled through procedure at eight weeks old. He
25:31
Speaker 2: then had like quite a few procedures to stretch the
25:37
Speaker 2: bowel and the dilations. I couldn't do it like I
25:43
Speaker 2: just I tried, and I tried, and it was quite traumatic.
25:47
Speaker 2: And mic has pulled through. Heeled on a bit of
25:50
Speaker 2: an angle, so when you were trying to do a
25:52
Speaker 2: dilation on his bowl, he would scream the house down.
25:56
Speaker 2: It was so painful for him to go through. And
25:59
Speaker 2: I not do that to my child. It was it
26:03
Speaker 2: was so trough. That was probably one of them traumatizing
26:07
Speaker 2: things for me as well as the aftercare. Give me
26:09
Speaker 2: a stone in any day of the week. I talked
26:12
Speaker 2: to it like a doctor, water like, but trying to
26:15
Speaker 2: dilate his bow and give him wash out, he would
26:18
Speaker 2: he'd scream. He hated it, and it was just it
26:22
Speaker 2: was awful for him. And you feel really guilty because
26:25
Speaker 2: you're you're giving that to your child. It's just horrible.
26:32
Speaker 1: Yeah, I know what you mean, because okay, technically kind
26:38
Speaker 1: of physically yes, but the reasons why you're doing it
26:41
Speaker 1: is obviously to help them. But how do you explain
26:44
Speaker 1: that to a child. You can't, can you, No.
26:47
Speaker 2: You can't explain it. And they're looking at it as
26:49
Speaker 2: I say, why are you doing this to me? And
26:52
Speaker 2: and I think, you know, if it was just if
26:54
Speaker 2: it was just a cry because he didn't like it,
26:56
Speaker 2: and it was a little bit you know, oh, go
26:59
Speaker 2: away from me, you don't like fair enough. But as
27:03
Speaker 2: I said, as Bow kind of healed on a bit
27:05
Speaker 2: of an angle. So every time we tried to go in,
27:08
Speaker 2: you had to like fiddle with the dilation tool to
27:11
Speaker 2: get at the right angle. Otherwise you can't get it.
27:13
Speaker 2: You couldn't get it in. And it was just really uncomfortable,
27:17
Speaker 2: like really like it was painful for him, and then
27:20
Speaker 2: it was painful for parents having to do that to him.
27:24
Speaker 2: And we went back quite a few times and was saying,
27:27
Speaker 2: you know, we can't do this. It's it's it's traumatizing
27:31
Speaker 2: for him, to the point where we used to take
27:33
Speaker 2: in to wald to Hey and he'd look at the
27:34
Speaker 2: doctors and me cry because he'd associated them with this
27:38
Speaker 2: is not a nice experience for me. It just did
27:41
Speaker 2: not like it. So he had to go under anesthetic
27:45
Speaker 2: quite a few times to be dilated. And then yeah,
27:51
Speaker 2: he had a I think he turned one in the April.
27:54
Speaker 2: When it was around the January February time he had
27:58
Speaker 2: his reverse and he was I want to say he
28:07
Speaker 2: was grace after he wasn't you know, he'd never been
28:12
Speaker 2: a toilet before. It's a whole host of different side
28:15
Speaker 2: effects of having Hairschpung's as poor bottom was an absolute
28:18
Speaker 2: agony and he's getting used to using his bottom and
28:22
Speaker 2: it was a difficult time again.
28:25
Speaker 1: Yeah, I can imagine that sort of posse training stage
28:29
Speaker 1: for for Hirshbrong's children is very is a very difficult
28:33
Speaker 1: It's a very difficult stage, I think for anybody anyway,
28:35
Speaker 1: but I think especially for Hirshbrog's children.
28:38
Speaker 2: I guess, yeah, well we're there now.
28:40
Speaker 1: Ah right, yes, okay, so you're you're not help the
28:44
Speaker 1: woods that are in the clear at all yet.
28:48
Speaker 2: Yeah. Well he's he's pull up free all day and
28:53
Speaker 2: he only wears them for bed because obviously when Micah
28:57
Speaker 2: goes to sleeper's body relaxes and sometimes go to the
29:00
Speaker 2: toilet and asleep and he's got no control because he's relaxed.
29:04
Speaker 2: So he's he's pull ups over night and he wears
29:07
Speaker 2: tenor pads and underpants of a day or a dad
29:11
Speaker 2: buys lines for him. But he's great and it's just
29:17
Speaker 2: his life, like he's never known any different. This is
29:20
Speaker 2: just what it is. There's days where he'll say, there's
29:24
Speaker 2: days where he'll say, mommy needs to go to the toilet,
29:27
Speaker 2: and there's days where he will take himself off to
29:30
Speaker 2: the toilet and needs and then he shout you when
29:32
Speaker 2: he needs you to help him. And then there's days
29:36
Speaker 2: most days he will have at least a couple of
29:38
Speaker 2: accents and it's he will come to and he's like
29:41
Speaker 2: pat an accidents and I don't make a fuss about it.
29:44
Speaker 2: It's not our why he's done that. You know you
29:47
Speaker 2: need to use the toilet. It's okay, no problem, let's
29:50
Speaker 2: clean you up because he can't. He can't help it sometimes,
29:56
Speaker 2: like it's not like he's got control like the children.
30:02
Speaker 2: So it's just as a matter of fact, okay, come on, son,
30:04
Speaker 2: let's go get you cleaned up. And that's what it is.
30:07
Speaker 2: I don't even reward when he makes it to the
30:09
Speaker 2: toilet because I don't want to make a differentiation between
30:12
Speaker 2: the two.
30:13
Speaker 1: Yeah, yeah, it makes absolute sense. I mean it is
30:20
Speaker 1: we as people with hirshprungs, we are, you know, whether
30:24
Speaker 1: we like it or not, we are going to be
30:26
Speaker 1: a bit different than other people. And yeah, no, that
30:29
Speaker 1: makes absolute sense to me, absolute sense. But it was
30:34
Speaker 1: there was something I did want to bring up with you.
30:38
Speaker 1: I know, chat a little bit about this before, about
30:42
Speaker 1: the Matsaline pajamas and the and your TV appearance.
30:50
Speaker 2: Oh my lovely TV appearance so embarrassing. I mean, it's
30:54
Speaker 2: a great cause and I was really privileged to be
30:57
Speaker 2: asked to do it. But didn't we Yeah, ITV News,
31:03
Speaker 2: I think it was.
31:05
Speaker 1: So.
31:06
Speaker 2: In twenty twenty one, Micah was nominated by Neo Natal
31:11
Speaker 2: cuse Mica has spent two weeks on Neo to be
31:15
Speaker 2: the face of the Matalan near natal appeal. So he
31:19
Speaker 2: was asked to be one of the children that were
31:22
Speaker 2: advertised in that. So but it wasn't just Micah, it
31:25
Speaker 2: was a family events, so myself, Micah and Micah's three
31:30
Speaker 2: siblings were all done the pajamas, which was lovely. It
31:36
Speaker 2: was a privilege to be asked to do that, and
31:39
Speaker 2: then when they'd done the ten year anniversary, I think
31:42
Speaker 2: I was in twenty twenty three, they asked us to
31:45
Speaker 2: come back and do it again. And obviously there's a
31:48
Speaker 2: comparison from Micah. There's this six month old baby. I
31:52
Speaker 2: don't even think he was six months. I think he
31:53
Speaker 2: was like around that marker in the first one, and
31:57
Speaker 2: then in the second one he was I think he's
32:00
Speaker 2: twenty twenty two, maybe just in three. But yeah, we've
32:09
Speaker 2: done it again. He was asked to do it again
32:11
Speaker 2: and it was beautiful to see the difference in how
32:14
Speaker 2: he'd grown in the pajamas. So we've all done it again.
32:17
Speaker 2: And I had to do an interview through our TV news,
32:20
Speaker 2: which was embarrassing. And yeah, he's been an ambassador for
32:28
Speaker 2: Olda Hay, a charity ambassador as little faces on the
32:31
Speaker 2: Johnson's Johnson's website as well, because so many pence of
32:35
Speaker 2: every Johnson's go to Olda Hay, So he's done that
32:37
Speaker 2: as well. Yeah, it's lovely the privilege to be asked.
32:43
Speaker 1: Yeah, yeah, I can, I can imagine. It's I know
32:48
Speaker 1: media and TV is not everybody's cup of tea, but
32:51
Speaker 1: I guess when when it's for such a cause that
32:55
Speaker 1: you're you're doing it for. I guess you kind of think, well,
32:59
Speaker 1: I'll brave it and do it type of thing. Was
33:03
Speaker 1: that that the sort of gist.
33:06
Speaker 2: Yeah, you can't just I feel uncomfortable in situations like this.
33:11
Speaker 2: I mean even this has never opened for me. But
33:14
Speaker 2: it's a case of you suck I suck it up
33:16
Speaker 2: and put myself out there alongside the children because not
33:21
Speaker 2: only you raising awareness for a wonderful hospital that treat
33:25
Speaker 2: children from all over you know, it's raising money for
33:30
Speaker 2: the charity. I had the opportunity to raise awareness for
33:34
Speaker 2: hairsprungs disease as well because a story was wrote about
33:37
Speaker 2: my care and it was it was an opportunity to
33:41
Speaker 2: be able to say, look this, this is a condition
33:44
Speaker 2: that you know made my child really poorly. Not a
33:50
Speaker 2: lot of people know about it. We were featured on
33:53
Speaker 2: the Liverpool Echo as well. The story went in there
33:56
Speaker 2: and that again spoke about hair shprungs disease and what
33:59
Speaker 2: hair springs was. So it's it's a bit of a
34:06
Speaker 2: oh for me, but I suck it up because I
34:10
Speaker 2: think I think it's so important to raise awareness. Four
34:13
Speaker 2: hairsprunks and to get it known, because I feel like,
34:19
Speaker 2: as as I said, I've said that I don't know
34:21
Speaker 2: how many times on this podcast. I have had four children.
34:24
Speaker 2: Michael was my fourth child. I had no idea what
34:27
Speaker 2: hairsprunks disease was. I think, and if I had had
34:30
Speaker 2: an ounce of any form of that information that it
34:34
Speaker 2: could have been something, I would have had them in
34:36
Speaker 2: that A and E or neonatal department wherever as soon
34:42
Speaker 2: as I had suspected there was something wrong, But I
34:44
Speaker 2: kept listening to it's mucus, on has tummy, it's mucus
34:48
Speaker 2: and has Tommy and yeah, And I think sometimes it's
34:54
Speaker 2: awareness is key, isn't it. If you don't, if you
34:56
Speaker 2: don't shouts about it, people don't.
34:58
Speaker 1: Know absolutely, And I think, and again I've had versions
35:04
Speaker 1: of that same story from people quite a few times.
35:09
Speaker 1: Because you do trust the nurses and doctors, and again
35:14
Speaker 1: I'm not this isn't having a go or whatever, because
35:16
Speaker 1: I know they do a very very good job and
35:19
Speaker 1: save also a lot of lives. But sometimes, especially with Hirshbrungs,
35:24
Speaker 1: it is brushed off a little bit. And I think,
35:28
Speaker 1: like you say, the more awareness we can raise and
35:32
Speaker 1: the more people can think, oh, actually the child is
35:37
Speaker 1: presenting X, Y and Z, then maybe we'll just have
35:42
Speaker 1: a look to see if it's hirshprungs. Because also that's
35:45
Speaker 1: the other thing you like, you said you had four children,
35:49
Speaker 1: no children, no history of hirshprungs or whatever in the family.
35:54
Speaker 1: So the idea and I get told this by people
35:57
Speaker 1: as well, and they say, oh, well, it's genetic. Well not,
36:01
Speaker 1: I mean, yes, it passed through the genius, but not
36:04
Speaker 1: necessarily in terms of family.
36:06
Speaker 2: Literally, it's a mutation, isn't it. So it is genetics mutate,
36:10
Speaker 2: so it doesn't necessarily mean laugh one. You know, it
36:15
Speaker 2: does mean that if you've got one, you can have
36:17
Speaker 2: more with it. But if it's mutating, then it doesn't
36:21
Speaker 2: necessarily mean that the older child, the child before is
36:23
Speaker 2: going to have the gene because it's mutated. That's my understanding. Anyway,
36:28
Speaker 2: I'm not a medical professional, sow I could be wrong.
36:33
Speaker 2: There was some querying around testing Micah's older brother because
36:38
Speaker 2: he did present with a few symptoms when he was born,
36:41
Speaker 2: but actually he's been perfectly fine. He just didn't go
36:45
Speaker 2: to the toilet when he should have when he was born,
36:47
Speaker 2: but he did eventually go. So there were some questions
36:52
Speaker 2: around whether to test him. But he's great, he's perfectly fine.
36:58
Speaker 2: But yeah, so that he like he's number four. And
37:02
Speaker 2: it was never. It was just never on my radar.
37:06
Speaker 2: I just didn't even know what it was.
37:09
Speaker 1: No, no, but that. But that's the case with so
37:12
Speaker 1: many people. I mean, people think that it just passes
37:15
Speaker 1: through the family and or if you've got hirshprungs, then
37:18
Speaker 1: you must have had it somewhere along the line. But
37:19
Speaker 1: I speak to so many people, and again it doesn't
37:22
Speaker 1: necessarily matter what type of hirshprungs either. There's a lot
37:26
Speaker 1: of people who have children with short segment or long
37:29
Speaker 1: segment or total it, whatever it might be, but have
37:32
Speaker 1: absolutely no history whatsoever. So there's no Sometimes there isn't
37:40
Speaker 1: so much a rhyme or reason. It would be lovely
37:42
Speaker 1: if we could find out, you know, however, many years
37:45
Speaker 1: down the line, that this is why this happened. And
37:49
Speaker 1: I guess that's the struggle. Sometimes when you want to
37:53
Speaker 1: make logistical sense of stuff, as we always do as humans,
37:57
Speaker 1: we want to say, right, this happened, because this happened,
37:59
Speaker 1: becau has this happened? But sometimes we just can't and
38:03
Speaker 1: I think, I know, I find that quite difficult. I
38:05
Speaker 1: don't know what it's like for you as well. Is
38:08
Speaker 1: that do you think about that or is it just
38:10
Speaker 1: kind of like, well that happened.
38:11
Speaker 2: And so when Michael was a little bit younger, yes,
38:16
Speaker 2: I was, I kind of like wanted them to have
38:19
Speaker 2: genetic tests and to find out, you know, I could
38:22
Speaker 2: have genetic tests and to see because I think you
38:25
Speaker 2: can test the family. But actually I'm not planning on
38:28
Speaker 2: having any more children, so it wouldn't really make any difference.
38:33
Speaker 2: I think, I think there is scope for Mica to
38:35
Speaker 2: have a genetic test just to see if there's links
38:38
Speaker 2: to could be links to anything else, because we so
38:47
Speaker 2: so I think there were scope for Mica to have
38:51
Speaker 2: genetic tests, and it's been discussed a few times. It's
38:55
Speaker 2: not happened us of yet. I don't know whether we will.
39:00
Speaker 2: I think it's sometimes it's just a sensible option and
39:02
Speaker 2: it helps research as well. Michael was enrolled in a
39:06
Speaker 2: research tod he when he was a baby and that's
39:08
Speaker 2: ongoing with older Hay. And I know I'm biased because
39:15
Speaker 2: I absolutely thought all the Hay, but they are putting
39:19
Speaker 2: so much effort into research and hair springs Hirshprung's disease. Again,
39:25
Speaker 2: we were both at the conference, So I think any
39:30
Speaker 2: anything that you can do to help with that research,
39:33
Speaker 2: I'm all for it. To get a better understanding as
39:38
Speaker 2: to how, how and why, and you know, how we
39:42
Speaker 2: can make things better moving forward and different techniques and
39:46
Speaker 2: ways to help the children. Yeah.
39:48
Speaker 1: Absolutely, Yeah, No, I I thought the conference was great
39:52
Speaker 1: for that as well, because there's so many things that
39:54
Speaker 1: I learned from it that I'd never come across before.
39:57
Speaker 1: And just have like a day where we just chack
40:00
Speaker 1: about and chat about different things was was was excellent. Yeah,
40:04
Speaker 1: but yeah, No, I think genetic testing is something that
40:07
Speaker 1: I do talk to a lot of people about and
40:09
Speaker 1: I think, yeah, I think that's incredibly important. But as
40:14
Speaker 1: we move sort of to later life, we've talked a
40:19
Speaker 1: little about how Micah is now and how he's getting on,
40:23
Speaker 1: and I guess, sort of, after all the surgeries and
40:26
Speaker 1: the procedures and whatnot, what are your hopes for the future.
40:33
Speaker 2: For Micah. I I just hope he lives a full
40:40
Speaker 2: life and doesn't let hairshprungs stand on his way, which
40:45
Speaker 2: he doesn't. I mean, as I said, it's all he's avernoon,
40:49
Speaker 2: he goes to a normal school. He's doesn't really requite
40:54
Speaker 2: a much, but school are really on board. They're really
40:57
Speaker 2: good to it. You're not making a Forciy as an accident,
41:00
Speaker 2: and I hope that continues as he ages. I think
41:05
Speaker 2: as he gets older it may become a little bit difficult.
41:07
Speaker 2: But he's making progress. He's not regressing, and that's always
41:13
Speaker 2: a good sign, and to pray that continues for him.
41:17
Speaker 2: He's a right character, so he's going to be He's
41:20
Speaker 2: he's a very clever little boy as well. He keeps
41:23
Speaker 2: me on my toes. That's what I'm saying.
41:27
Speaker 3: Brilliant.
41:28
Speaker 1: That's fantastic, And thank you so much for coming on
41:32
Speaker 1: and obviously all the work you do at Older Hay
41:34
Speaker 1: as well in helping people stay safe and well and whatnot.
41:39
Speaker 1: But thank you so so much for coming on and
41:42
Speaker 1: tell him like a story. It's been an absolute pleasure
41:44
Speaker 1: to have you on.
41:45
Speaker 2: Thank you for having me, Thank you for listening.
41:51
Speaker 1: And being part of this growing community. If you have
41:54
Speaker 1: enjoyed the episode, don't forget to subscribe, leave a review
41:58
Speaker 1: and share it with someone who might need it. You
42:00
Speaker 1: can connect with us on social media via Instagram, Facebook,
42:04
Speaker 1: and TikTok under the name Tom's Hirsprung's podcast, See you
42:08
Speaker 1: next week.