Latest / Tom's Hirschsprung's Podcast / Episode 44 - With Jamie Birkett

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Episode 44 - With Jamie Birkett · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where our provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports.
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Speaker 2: Hello and welcome to episode forty four of Tom's Hirshbrun's Podcast.
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Speaker 2: With Me Today is an actor who has starred in
0:48
Speaker 2: Oliver as Missus Sowerberry, who was also on the UK
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Speaker 2: Junior Eurovision jury in twenty twenty three. My guest today
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Speaker 2: is Jamie Burkett. Jamie, welcome to the podcast. He thanks
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Speaker 2: so much for joining me coming on. I know we
1:04
Speaker 2: were talking very briefly and when we'll talk about this
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Speaker 2: a little bit later, but you are the four actor
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Speaker 2: that have had on.
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Speaker 3: Sony we would I know we were talking a little.
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Speaker 2: Bit about acting and Hirshprungs and whether there's some kind
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Speaker 2: of lenk to that as well. But thank you so much,
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Speaker 2: Thank you so much for coming on.
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Speaker 3: Thank you, thanks for having me.
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Speaker 2: I'd like to start if I may just sort of
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Speaker 2: from the beginning. Yeah, because anybody who's been following you
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Speaker 2: for a while knows that you have a strong affiliation
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Speaker 2: with hirsch Sprung's disease, that kind of runs in your family.
1:42
Speaker 2: You don't have it personally, but you have children who
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Speaker 2: have Birshbrungs, and part of bus has purge Sprungs as well.
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Speaker 2: I'd like to start sort of with the more recent
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Speaker 2: experience of your children being born with Hirshprungs. Would you
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Speaker 2: like to start sort of from the beginning with that.
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Speaker 3: Yeah, So I have one little boy called Dylan. He's
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Speaker 3: nearly four now, so when he was born, obviously Fred,
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Speaker 3: that's my husband still in his dad he has Hirsbrungs.
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Speaker 3: But I was sort of led to believe that it wasn't.
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Speaker 3: You know, it didn't. It didn't directly follow on. So
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Speaker 3: it was it's a genetic disease, but it's not necessarily hereditary.
2:26
Speaker 3: Whether that is true, I don't know. I've done a
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Speaker 3: lot of research into it, and you know, I think
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Speaker 3: some people disagree with that, and from all the Facebook
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Speaker 3: groups I'm on, it seems like there's a lot of
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Speaker 3: her hesitary But then it does also pop up out
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Speaker 3: of the blue. So I was I guess naive and thought, oh,
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Speaker 3: it's unlikely because actually Fred's two brothers don't have it,
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Speaker 3: but his dad has it. So his dad obviously had
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Speaker 3: two sons without it before he had friends if Fred
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Speaker 3: was the younger, so I thought, you know, it's very
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Speaker 3: unlikely Dylan will have it. And luckily my brother in law,
3:04
Speaker 3: so Fred's brother is a pediatric consultant at hospital, so
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Speaker 3: he went into it obviously seeing Fred's be in hospital
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Speaker 3: so much, which is so lovely. So I got a
3:19
Speaker 3: lot of advice pre birth from him and my sister
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Speaker 3: in law who's a GP. And you know, they said
3:26
Speaker 3: that the first thing to look for was just to
3:28
Speaker 3: make sure that he passed the maconium so like pood immediately.
3:32
Speaker 3: So I was so hot on that. And when he
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Speaker 3: didn't go to the toilet, you know, within a few hours,
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Speaker 3: but he did. He did breastfeeder rigis like when he
3:44
Speaker 3: first was born, he fed, which I thought was a
3:47
Speaker 3: good sign. Anyway, cut to he basically through the night
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Speaker 3: started throwing up a really intense green vomit. And the
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Speaker 3: thing is, as a first time mother, you don't really know.
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Speaker 3: That's the scary thing because you don't know what's normal.
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Speaker 3: I mean, what is normal, but you don't know what
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Speaker 3: is normal from a baby. You just think, oh, well,
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Speaker 3: that's what babies do. But it got crazy, like I
4:11
Speaker 3: think I'd taken and I'm an overpacker, so I'd taken
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Speaker 3: like twenty baby grows and I'd gone through them all
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Speaker 3: in the first day. They were all bothered in green,
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Speaker 3: like bright green sick. It was like something out of Ghostbusters.
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Speaker 3: And I kept asking, like, he hasn't gone, he hasn't
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Speaker 3: passed the maconium, and he's vomiting this green stuff. And
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Speaker 3: I kept being told by the doctor that was seeing me,
4:37
Speaker 3: which was it a young man, and that'll come back
4:41
Speaker 3: in a sec. And he kept saying, no, you're a
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Speaker 3: first time mom and it was a c section, and
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Speaker 3: it's really common. You're just worried. And at first I thought, Okay,
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Speaker 3: give him the benefit of the doubt, and I went
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Speaker 3: with it. But then after sort of a day and
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Speaker 3: a half and the baby was Dylan was just crying
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Speaker 3: all the time, and I was constantly and I could
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Speaker 3: hear the babies in the beds next to me eat,
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Speaker 3: like eating, and like, and he then he wouldn't eat.
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Speaker 3: He hadn't he hadn't taken any milk from me since
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Speaker 3: that very first time when he was born, and I
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Speaker 3: just I just knew, like they say that you know
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Speaker 3: and you just do, like this is an instinct there.
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Speaker 3: And I kept crying to the midwives and saying, I, actually,
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Speaker 3: you know, I did have a pretty horrendous time. It's
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Speaker 3: only looking back and when I tell people the story
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Speaker 3: that I think, actually, that wasn't right. I kept crying
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Speaker 3: to all my midwives and I get it there over work,
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Speaker 3: but I don't think I got the best care I
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Speaker 3: could of. And then eventually, at about six in the morning, delirious,
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Speaker 3: I had an older and older lady of one of
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Speaker 3: the midwives and I just cried to her like she
5:53
Speaker 3: was my mom or my nana, and I said, please
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Speaker 3: please get me another doctor, get me another doctor to
5:59
Speaker 3: look at my baby and rightly or only and I,
6:03
Speaker 3: you know, maybe shouldn't admit this is what I said,
6:05
Speaker 3: but I was like, please keep me a woman, Please
6:07
Speaker 3: get me a woman. And so a woman doctor came,
6:12
Speaker 3: an older woman doctor, and she took one look at
6:15
Speaker 3: him and was like, no, that's not right, and I said, okay.
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Speaker 3: So she took him into the into what I can
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Speaker 3: only deem the back office. It wasn't like a it
6:26
Speaker 3: was it wasn't like.
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Speaker 2: A you know, not like a ward.
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Speaker 3: Already Ben all the people there and they were sat dead,
6:36
Speaker 3: and she she put it like a tube down his
6:39
Speaker 3: throat and I remember her saying, as long as it
6:41
Speaker 3: doesn't come back black, everything's okay. But literally the second
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Speaker 3: she said that, all this black came up like from
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Speaker 3: his throat and I had a put like a ninety
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Speaker 3: on with mice on it. I don't know why that
6:56
Speaker 3: I remember that, but and I said what does this mean?
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Speaker 3: And she said, okay, that means we have to take
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Speaker 3: him to nick qu and again as the first time, mum,
7:03
Speaker 3: you hear that and think the absolute worst. And she said,
7:06
Speaker 3: do you want to go and get changed? The meters
7:08
Speaker 3: down there? That's like, no, it doesn't walk in the
7:13
Speaker 3: hospital if you live in no hospital. Dressed as a mouth,
7:17
Speaker 3: God help me. And I went to nic Q, and
7:20
Speaker 3: obviously it was COVID, so Fred wasn't with me. I
7:22
Speaker 3: was completely on my on the entire time, which again
7:26
Speaker 3: was really hard because Fred and I are like a
7:30
Speaker 3: proper team, so be without him was really difficult. And
7:35
Speaker 3: then they said Fred can now come because he's in
7:37
Speaker 3: he's in LIQUEUE obviously the neonatal intensive care unit, and
7:43
Speaker 3: so he then came, which you know, I was a
7:46
Speaker 3: bit like, oh now we can calm now that the like,
7:49
Speaker 3: you know, and it's a really scary place to be.
7:52
Speaker 3: There's babies and incubators and there's people, and because of COVID,
7:56
Speaker 3: everyone was not just masked. It was like in you know,
7:59
Speaker 3: like how smart suits it was. It was very scary.
8:03
Speaker 3: And what I will say, though, is the care I
8:07
Speaker 3: received in that Nicky Award was far better than I
8:09
Speaker 3: had received on the Post nat Award. Everyone in there
8:12
Speaker 3: was incredible, and it would be remissied me not to
8:15
Speaker 3: mention that. There was one particular I don't know if
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Speaker 3: she was a nurse or a doctor, I can't remember.
8:21
Speaker 3: I think she was called Helen, and she was amazing.
8:24
Speaker 3: She got down on her knees because I was sat
8:26
Speaker 3: down as she was like, we will give your son
8:28
Speaker 3: the best care because I was hysterical, and they scanned
8:32
Speaker 3: him and said first they said it was fine and
8:34
Speaker 3: there was no suspicion. I'd constantly said about the hirshbrongs. Again,
8:39
Speaker 3: I just don't think though, like in mainstream hospitals, it's
8:42
Speaker 3: well known enough because you say hirshbrongs, and honestly, I'd
8:47
Speaker 3: say like ninety percent of people don't know what you're
8:49
Speaker 3: talking about. And if I've seen, you know, one spelling
8:53
Speaker 3: of it, I've seen forty five and it's fine. But
8:58
Speaker 3: you know, with babies, I feel like we need to
9:00
Speaker 3: be doing better actually, And so they were like, no,
9:04
Speaker 3: it's fine, there's no obstructions, everything's fine. So I was
9:08
Speaker 3: that okay, good. So then we were worried as to
9:10
Speaker 3: what it could what else could it be? And then
9:13
Speaker 3: the consultant came around maybe an hour later and said, actually,
9:16
Speaker 3: there is a suspicion on his bowel and we're going
9:19
Speaker 3: to blue light you to Great Almond Street. So everything
9:22
Speaker 3: just happened really quick. And again hearing that is terrifying
9:26
Speaker 3: because you do think rightly or wrongly, or I did,
9:30
Speaker 3: that's it that my baby's going to die or is
9:33
Speaker 3: certainly knocking on the door of that. So I was hysterical,
9:37
Speaker 3: and because of COVID, I wasn't allowed in the ambulance
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Speaker 3: with him, so they took him in a special ambulance
9:44
Speaker 3: with these two women who obviously with the ambulance staff,
9:49
Speaker 3: who again were really lovely, and I got in a
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Speaker 3: taxi behind having just had a C section, all the
9:55
Speaker 3: way to London. So that was a traumatic dry and
10:01
Speaker 3: then we got to break on the street late at night.
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Speaker 3: It was about eleven o'clock at night, so it was
10:06
Speaker 3: like really dark. And one of the things that I
10:09
Speaker 3: always struck me, although we sort of never saw him again,
10:11
Speaker 3: was the doctor that first assessed Dylan was called Dylan Oh.
10:17
Speaker 3: And we were like, okay, that's a good sign. And
10:20
Speaker 3: it was like a whole different you know, I don't
10:22
Speaker 3: want to speak bad about Luna dunstable, but I willed,
10:28
Speaker 3: But Gosh, is like a whole different world. Like it
10:31
Speaker 3: was like going from like a one star to like
10:34
Speaker 3: a five star, rolling closer, you know what I mean.
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Speaker 3: It's just that just everyone there is just kind and calm,
10:40
Speaker 3: and you know, people were saying, can I get you
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Speaker 3: some water? That everyone cared about me just as much
10:45
Speaker 3: as Dylan, which I thought was which is kind of
10:50
Speaker 3: a given. I think that people in those children's hospitals
10:53
Speaker 3: are going through the worst times of their life, really
10:58
Speaker 3: really so, and we got there, I felt safe. I
11:02
Speaker 3: felt really safe, and they were amazing. They took him
11:06
Speaker 3: in and we were in for a very long time.
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Speaker 3: We were in for nearly a month that first time,
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Speaker 3: because they were doing they have to do biopsies to
11:18
Speaker 3: officially say it's Hirshbrong's, which which took a long time
11:21
Speaker 3: because he was so poorly and obviously he had to
11:23
Speaker 3: be well enough to have the biopsies done of his bowel.
11:27
Speaker 3: He'd got infection, so he was on you know, a
11:30
Speaker 3: drip and a central line and so many antibiotics. And
11:35
Speaker 3: then they said that they were going to teach us
11:38
Speaker 3: to do washouts, which is basically you put a tube
11:41
Speaker 3: up the bomb and then it brings out the pole
11:43
Speaker 3: from from the rectum, and that's what we were going
11:48
Speaker 3: to do. So we were learning that. But then after
11:51
Speaker 3: a week of them monitoring us doing that, we realized
11:54
Speaker 3: that we were like, we couldn't do enough, if that
11:57
Speaker 3: makes sense. So we were doing like eight to a day,
12:00
Speaker 3: but actually it was like, or maybe you need to
12:02
Speaker 3: do ten, and they said that we had to get
12:05
Speaker 3: it so to do the official biopsy, I think he
12:08
Speaker 3: had to have not had a wash out for like
12:11
Speaker 3: twelve hours, it was something like that, and which was
12:15
Speaker 3: just impossible because he was just swelling up so big.
12:19
Speaker 3: And then after I think, yeah, two or three weeks
12:24
Speaker 3: of that, they are surgeon, who is amazing. We're seeing
12:29
Speaker 3: tomorrow actually for a review, which is which is professor
12:32
Speaker 3: to copy. I'll tell you a fun little story about
12:35
Speaker 3: him in a minute. He came and he said to me,
12:40
Speaker 3: he's amazing. I like, I love that man. He said, look,
12:43
Speaker 3: it's going to be a stona now and it's you
12:49
Speaker 3: just I'm sort of half terrified and half okay, that's fine,
12:55
Speaker 3: because I just wanted something to happen, you know. And
12:59
Speaker 3: he given a stoma and a cost to a bag
13:03
Speaker 3: of stoma bag attached, and we had to get his
13:07
Speaker 3: eating up because his weight was so bad. So then
13:09
Speaker 3: I was in for another week trying to get his
13:11
Speaker 3: weight up, which wasn't really happening because I think then
13:15
Speaker 3: he hadn't fed for so long. Then he would only
13:17
Speaker 3: take from like the bottle. And it was gosh, like
13:20
Speaker 3: I think about it now and sort of relive in it.
13:23
Speaker 3: There was and I'm the things I'm just recalling now
13:28
Speaker 3: are probably ten percent of actually what went down. It was.
13:32
Speaker 3: It was a lot. So that's that was the sort
13:35
Speaker 3: of first journey. And then when then he was healthy
13:38
Speaker 3: and after yeah, we came home. So he was born
13:40
Speaker 3: seventeenth January and we came home end of February for
13:46
Speaker 3: the first time. So I'd left have a baby with
13:49
Speaker 3: you know, like one outfit in my bag, and came
13:53
Speaker 3: home nearly six weeks later.
13:55
Speaker 2: Wow.
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Speaker 3: So it was a bit crazy. But you know, I
13:59
Speaker 3: heard I have a huge amazing team around me, like
14:03
Speaker 3: my mom and Fred and Fred's family and all my friends.
14:08
Speaker 3: And we were in COVID, which was awful. But a
14:12
Speaker 3: friend used to calm sort of most days and walk
14:15
Speaker 3: around the park with me, just with the coffee. And
14:19
Speaker 3: not just one. I had a couple, but one in particular, Leo.
14:22
Speaker 3: He lived really close by, so we used to and honestly,
14:26
Speaker 3: the mental health aspect of that, you know, and you think,
14:28
Speaker 3: I look back now and think, God, those walks around
14:31
Speaker 3: the park for half an hour forty five minutes probably
14:34
Speaker 3: saved me in that time. They kept me saying. So
14:39
Speaker 3: that was the first That was the first bit. But
14:42
Speaker 3: realized I've been talking a lot.
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Speaker 2: No, no, you go as long as you need. I
14:47
Speaker 2: just wanted to ask on that mental health aspect. I
14:50
Speaker 2: know you did a post about about how support, how
14:54
Speaker 2: much support you received from Gosh and everything and just
14:59
Speaker 2: how important that was, and it's something that suddenly when
15:04
Speaker 2: I was born with Hirshbrums. That would be thirty odd
15:07
Speaker 2: years ago, that was something would be completely overlooked then
15:11
Speaker 2: that's so so important. Now I'm gonna talking just a
15:16
Speaker 2: little bit more about that.
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Speaker 3: Yeah, there are like listen, I am a fully paid
15:21
Speaker 3: up member of the gosh I Club. I just I
15:27
Speaker 3: think it's an incredible place. And I'm actually funny enough
15:31
Speaker 3: that the zoom I'm doing straight after this it's for
15:35
Speaker 3: a charity that works with Gosh and I sing for kids.
15:38
Speaker 3: So I am literally about to sing for two wards
15:42
Speaker 3: in Gosh and they do around the iPad and I
15:45
Speaker 3: sing to the kids that can't leave their bed. And
15:48
Speaker 3: that is because when I was at Gosh, I kept
15:51
Speaker 3: saying to people because I'd just finished I just finished
15:53
Speaker 3: Labien's Yeah, oh, I'd been not long out of liners,
15:57
Speaker 3: and you know, the nurses found this out and that
16:00
Speaker 3: interesting and at the time I just wanted to do
16:02
Speaker 3: anything I could, like to help anybody, because I felt
16:06
Speaker 3: like people were helping me. So I kept saying, like, look,
16:08
Speaker 3: if there's any kids that love musical theater, like please,
16:11
Speaker 3: I'll come and last thing for them, and not for
16:14
Speaker 3: like safety and safeguarding. They can't just let me wander
16:18
Speaker 3: around the woods, which poor enow. So when I one
16:22
Speaker 3: of the first things I looked into was a charity
16:24
Speaker 3: that did that and so and now I work for them.
16:26
Speaker 3: So it's amazing. I honestly it makes me so incredibly happy,
16:32
Speaker 3: and I think it makes me slightly off topic, like
16:36
Speaker 3: I feel really privileged because I know that it's not
16:39
Speaker 3: just for the kids, it's for the parents, and they
16:42
Speaker 3: know because obviously we don't really talk about it, but
16:45
Speaker 3: they don't know, but I know, and it just I
16:47
Speaker 3: don't know. It just makes me feel like if I
16:49
Speaker 3: can give that family like a tiny bit of respite,
16:54
Speaker 3: even if it's one percent, then that's that makes me happy.
16:58
Speaker 2: That's fantastic.
16:59
Speaker 3: Yeah, really, it's so amazing, Like they have the like
17:03
Speaker 3: everyone from the play the player team are incredible, like
17:07
Speaker 3: genuinely incredible. They calm like, we had this big fiber
17:10
Speaker 3: optic thing at the bottom of the bed that they
17:12
Speaker 3: brought when Dylan because Dylan has really weak veins, so
17:17
Speaker 3: he kept and I'm sure people listening to this will
17:20
Speaker 3: have had this, but anytime they tried to put a
17:23
Speaker 3: canular in it failed. He also was a newborn baby,
17:27
Speaker 3: so we were getting canulars that were lasting hours rather
17:31
Speaker 3: than days or weeks, and so there was a point
17:34
Speaker 3: where he just was going from canula to canula to canula,
17:39
Speaker 3: and the doctors and nurses couldn't get it in, so
17:41
Speaker 3: we were having to have the specialist team calm with
17:43
Speaker 3: their light. At one point even the specialist team couldn't
17:47
Speaker 3: get it in, so they had to bring up anstist
17:50
Speaker 3: to do it, which that part, genuinely I think was
17:54
Speaker 3: the worst bit, like watching those canulas have to beat
17:57
Speaker 3: constantly and then constantly be like the cannul has failed.
18:01
Speaker 3: That was the work, because it just felt like failure
18:04
Speaker 3: after failure, and the play team would come and they'd
18:08
Speaker 3: try and distract him, and they put lights on and
18:10
Speaker 3: they'd play with you know, little finger puppets, and again
18:15
Speaker 3: it's for Dylan, of course it is, but I also
18:18
Speaker 3: felt that it was for me because you feel so
18:21
Speaker 3: helpless watching your child's scream and cry. You don't know
18:26
Speaker 3: what to do so and that child is so little,
18:30
Speaker 3: they don't have any vocabulary. So those people with their
18:34
Speaker 3: little hand puppets and their and their you know laughter
18:37
Speaker 3: and just just actual god tip people, they're just for
18:41
Speaker 3: me the best. And then I had this amazing experience
18:45
Speaker 3: where one of the CNS is so clinical nurse specialists,
18:49
Speaker 3: so we have three attached to Dylan's case and they're
18:53
Speaker 3: all amazing. I on it, like, I don't know if
18:56
Speaker 3: it's Stockholm syndrome, but I felt like if it was allowed,
19:00
Speaker 3: I'd be friends with everyone. Like It's like I genuinely
19:04
Speaker 3: felt like I would be friends with all these women.
19:07
Speaker 3: But maybe that is times I was saying, I'm like,
19:14
Speaker 3: we'd be friends, we'd be friends. And one of them
19:19
Speaker 3: came into my room one day and said, like so
19:23
Speaker 3: so kind and wonderfully, and she said, someone has identified
19:26
Speaker 3: that you might benefit from speaking to one of our counselors.
19:32
Speaker 3: Now I don't know who that was. It will have
19:35
Speaker 3: been a nurse, I'm sure, but I just thought it
19:37
Speaker 3: was such an incredible thing that a nurse had gone
19:39
Speaker 3: to this this CNS and said, look, I think she's struggling.
19:44
Speaker 3: And I was on my own, I think she's really
19:47
Speaker 3: struggling and maybe would would benefit from that. And the
19:51
Speaker 3: way they handled it was so perfect because it didn't
19:54
Speaker 3: feel like anyone was saying there's something wrong with you
19:57
Speaker 3: where you need help. It was let us help. And
20:01
Speaker 3: I said okay, and I so I spoke someone a
20:05
Speaker 3: couple of times whilst I was in hospital, which is
20:09
Speaker 3: really helpful. And then when I left hospital, I had
20:14
Speaker 3: was it weekly I think it was weekly or certainly
20:16
Speaker 3: bi weekly for about a year zoom sort of therapy
20:23
Speaker 3: sessions with a with a Gosh therapist. And again I
20:27
Speaker 3: had a thing of like, if we weren't there a visitable,
20:29
Speaker 3: we'd be fresh. He's definitely, I'm sure with trop.
20:35
Speaker 2: And she was.
20:36
Speaker 3: She was unbelievable. She was just amazing. And I went
20:41
Speaker 3: basically straight back into work where when Dylan was three
20:45
Speaker 3: months old, and so I was on tour with the
20:50
Speaker 3: show and having these sessions and I had Dylan with me.
20:54
Speaker 3: So I was touring with Dylan with my who was
20:57
Speaker 3: my childcare. I was doing a show every night right
21:01
Speaker 3: with the child with a stoma bag and listen, we
21:05
Speaker 3: made we you know, we made it work. And I
21:07
Speaker 3: actually look back on that whole year as like, and
21:10
Speaker 3: I'm sure I will when I'm when I'm older, I
21:13
Speaker 3: look back and think, I can't believe we made that work.
21:15
Speaker 3: And it was such a success and it was so brilliant,
21:18
Speaker 3: and I'm so proud of us all yeah, and I
21:21
Speaker 3: think a lot of that and the reason I could
21:25
Speaker 3: go back to work and the reason that I could
21:29
Speaker 3: function and be happy and everything was because of the
21:34
Speaker 3: help I got, you know, And I think that's it's
21:38
Speaker 3: such a huge, huge thing that makes all the difference.
21:44
Speaker 2: Absolutely. I think thank you so much again for sharing
21:47
Speaker 2: that and sharing it so publicly as well on your
21:51
Speaker 2: on your page, because I think it would be easy
21:53
Speaker 2: to just go, well, I don't want to talk about
21:55
Speaker 2: I don't want to say this, so I don't want
21:56
Speaker 2: to say that, but thank you so much the share,
22:00
Speaker 2: because I think there will be especially people people listening
22:03
Speaker 2: to this will maybe have gone through something very very similar,
22:07
Speaker 2: and we'll be thinking, oh, actually, I mean undoubtedly, you know,
22:11
Speaker 2: especially when you have a child with an illness that
22:15
Speaker 2: nobody's heard of, nobody knows about, and you're constantly searching
22:18
Speaker 2: for answers and searching for this that the other. It's
22:22
Speaker 2: going to take. It's going to take a toll. It's definitely.
22:25
Speaker 3: And I think because of what the disease is, I think,
22:29
Speaker 3: you know, we've moved forward as a world, but like
22:33
Speaker 3: it is, it is a disease as a vowel, and
22:36
Speaker 3: it means that there is a lot of poo. I mean,
22:39
Speaker 3: I feel like I'm an expert on the bowel, do
22:42
Speaker 3: you know what I mean. It's like, see if anyone
22:44
Speaker 3: talks to me about poo or anything, I'm straight, I'm like,
22:46
Speaker 3: well ahead. And it's weird now is I feel like
22:51
Speaker 3: I'm the person people talk to about about their bowels?
22:55
Speaker 2: Yeah, yes, you're. Your vowel explained and.
22:58
Speaker 3: The vowel excels. No. But even if, like you know,
23:00
Speaker 3: one of my colleagues hasn't been the toilet or isn't
23:02
Speaker 3: feeling great, I feel like they come to me and
23:04
Speaker 3: I'm like, I love that I've now got this sort
23:06
Speaker 3: of like poh princess, like do you know.
23:10
Speaker 2: Yeah, you have a de bacton role, you know, hope.
23:12
Speaker 3: Yeah, But I take the title with pride because once
23:17
Speaker 3: you've got a kid with Hersbroms or I assume her
23:21
Speaker 3: to Hersbroms, all of that goes out the window. Like
23:23
Speaker 3: I just don't care about anything anymore, Like I just
23:27
Speaker 3: I have no squeam it, Like I'm just like none
23:31
Speaker 3: of it phases me, which which I love. But I
23:34
Speaker 3: do think like when it's when it's to do with
23:38
Speaker 3: like the bowels and Poe and things. People get a
23:40
Speaker 3: bit more embarrassed about talking about it, and I think
23:44
Speaker 3: we need to just sort of get over that because
23:46
Speaker 3: we all do it and it's and that for me
23:51
Speaker 3: was and sort of is still a little bit, if
23:53
Speaker 3: I'm being honest, Like, my concern, my concern when it
23:57
Speaker 3: all happened was that it was it's weird. Where the
24:00
Speaker 3: brain goes was that I don't want him to be bullied.
24:03
Speaker 3: I don't hids to bully it. That was that was
24:06
Speaker 3: where my brain went. Well having accidents at school, yeah,
24:10
Speaker 3: but now best believe I'm like ready for a fight. Also,
24:17
Speaker 3: like Dylan has done so well with what he training
24:20
Speaker 3: and he has accidents, and but I am very much
24:23
Speaker 3: like or I'm trying definitely to be more like who cares?
24:28
Speaker 3: But because who actually cares? Like realistically like and anyone
24:32
Speaker 3: who does care, then they don't matter work, they're not
24:37
Speaker 3: worth the time. And that actually is this sort of
24:40
Speaker 3: the crux of it, isn't it. It's like I remember,
24:42
Speaker 3: my my husband Fred told me this incredible story that
24:46
Speaker 3: has that I've never forgotten that when he was at school.
24:49
Speaker 3: So I don't know if you're the same, and he
24:50
Speaker 3: won't mind me sharing this, but because because obviously he
24:54
Speaker 3: has hush bombs in the he had total clonic, which
24:58
Speaker 3: is what Dylan has. So when he goes to the toilet,
25:01
Speaker 3: it's obviously quite explosive and it's quite loud. So when
25:07
Speaker 3: he went to the toilet as a young young person,
25:10
Speaker 3: so let's say like eight nine ten, his best friend
25:15
Speaker 3: used to come to the toilet with him and used
25:17
Speaker 3: to used to put his hands under the hand dryer
25:20
Speaker 3: and used to keep the hand dryer going so no
25:22
Speaker 3: one would ever hear it. Oh that's so nice, nicest
25:27
Speaker 3: thing you've ever heard.
25:28
Speaker 2: Oh that's lovely, And.
25:32
Speaker 3: I like that has never like that has never left
25:36
Speaker 3: me because whenever I had a lot of warballs about like,
25:39
Speaker 3: well kids are cruel kids, Fred would be like, you
25:42
Speaker 3: know what, some kids are amazing, and I like, yeah,
25:48
Speaker 3: you're right.
25:48
Speaker 2: I think sometimes we can go towards the negative quite often,
25:53
Speaker 2: and we can think, oh, what is this and what
25:54
Speaker 2: if that? But actually the opposite could very well be
25:57
Speaker 2: true and people could do extra things for you, you
26:01
Speaker 2: you know, as opposed to doing negative.
26:04
Speaker 3: Yeah, exactly, And I think that's that's definitely where I
26:08
Speaker 3: like have to think that because that's better for my
26:11
Speaker 3: mental health to think that than to think like bad
26:14
Speaker 3: of people. Yeah, yeah, So I think mental talk is
26:19
Speaker 3: such a huge thing. It's a huge, huge thing, absolutely, absolutely.
26:25
Speaker 2: And swell. I mean when it comes to great Ormond Street,
26:30
Speaker 2: I know you've touched on a little bit as well,
26:32
Speaker 2: just how important and how great the nurses were to
26:37
Speaker 2: you at great Ormond Street. Having been there for sixteen
26:41
Speaker 2: years myself, I've seen sort of the inns and the
26:44
Speaker 2: outs and just how incredible they are. Yeah, but I
26:49
Speaker 2: saw that you've written that they were making tea for
26:52
Speaker 2: you and they were doing this, so they were doing that,
26:54
Speaker 2: and just how sort of amazing were they that.
26:58
Speaker 3: Just they're the best people I've ever met, like honestly,
27:02
Speaker 3: and that I say that with no hyperboleate, Like I
27:07
Speaker 3: just genuinely, like I remember every single person that saw Dylan.
27:12
Speaker 3: And you know, tomorrow when we go in to see
27:15
Speaker 3: Professor to copy, we always tend to go up to
27:17
Speaker 3: the wards that our award was Chameleon and Bumblebee. I'll
27:21
Speaker 3: say about that in a second, but Chamele award was
27:24
Speaker 3: the main one we were on, and so we were
27:26
Speaker 3: on for that first six week. Then we came back
27:29
Speaker 3: to have the operation when he was one, so I'd
27:32
Speaker 3: taken time of work and blah blah blah. And then
27:36
Speaker 3: Dylan got really sick. He got really poorly. He had
27:39
Speaker 3: what we now know is in trocolitis, and it was
27:43
Speaker 3: decided that he couldn't have the operation because he wasn't well, like,
27:47
Speaker 3: he wasn't strong enough to sustain it. So then it
27:50
Speaker 3: was put back a few months. I think it wasn't
27:53
Speaker 3: that much. It was maybe two or three months. So
27:55
Speaker 3: then the day finally came. You know, there's all the anticipation,
27:58
Speaker 3: and we got there and he was taken in and
28:01
Speaker 3: it was amazing. And Fred and I remember we walked.
28:05
Speaker 3: We just walked into London because Great Ostrey is in
28:08
Speaker 3: Russell Square and I just said, look, I just need
28:11
Speaker 3: to keep busy. So we walked into London and we
28:14
Speaker 3: were just wandering and I was in Mark suspenses and
28:16
Speaker 3: I got a call and we'd only been gone from
28:19
Speaker 3: the hospital, like well, however long it takes to walk
28:22
Speaker 3: to Oxard an hour and maybe forty fiven And we
28:25
Speaker 3: got a call and I saw it was gosh and
28:27
Speaker 3: I answered and it was uh, I think one of
28:32
Speaker 3: the nurses and she was like, hurry, Jamie, like is
28:35
Speaker 3: it possible for you to come back? And I was like,
28:39
Speaker 3: is everything okay? And she was like, everything's absolutely fine,
28:42
Speaker 3: just we're not able to proceed like we thought and
28:45
Speaker 3: like and I again was hysterical, but she calmed me
28:48
Speaker 3: so that I knew there was nothing wrong. And again
28:51
Speaker 3: her manner perfect because you hear that and you think
28:55
Speaker 3: something tragic has happened. Well I was again I felt
28:58
Speaker 3: very held. We went back and it was discovered that
29:01
Speaker 3: they'd done biop season that it wasn't short section or
29:04
Speaker 3: long section, it was totalal on it. And he was
29:07
Speaker 3: one at the time, and they said, and missus Coppy said,
29:13
Speaker 3: you know, for the amount that we're going to have
29:16
Speaker 3: to take out of this child now, it is best
29:18
Speaker 3: we wait till he's a bit bigger. So that's what
29:22
Speaker 3: they did. Actually I'm saying that was this six months.
29:25
Speaker 3: Then then he came back at one. Yes, I think
29:28
Speaker 3: that was it. Sorry, I think I had to do
29:29
Speaker 3: the operation at six months. And so this was by
29:34
Speaker 3: now we've already had it, you know, because he'd been
29:36
Speaker 3: ill the last time. So this was now the second
29:39
Speaker 3: you know, iteration of it. So then we had to
29:42
Speaker 3: then wait another and we had to pack up. And
29:45
Speaker 3: it's silly because it's like, you know your child is
29:49
Speaker 3: safe and happy, but you've been your whole being has
29:53
Speaker 3: been leading up to this, and they're just so amazing
29:56
Speaker 3: at making sure that you're supported and it I can't
30:01
Speaker 3: tell you. It's such a team as well, you know,
30:03
Speaker 3: it's such one person. They all look after you. And
30:06
Speaker 3: then we came back to have it to have the
30:11
Speaker 3: pull through. He had a de Hammel pulled through procedure,
30:15
Speaker 3: so we came back when he was just just over
30:17
Speaker 3: one to have it, and then we got a call.
30:21
Speaker 3: So we were in the accommodation, you know, the on
30:23
Speaker 3: site accommodation, and we bought a call that morning to
30:27
Speaker 3: say that too many people had COVID because that was
30:30
Speaker 3: when I think it was omicron had come and everyone
30:33
Speaker 3: was off at and there wasn't enough nurses in Chameleon
30:39
Speaker 3: for him to go to comelean wards, which those were
30:43
Speaker 3: all the nurses I knew. It was the place I knew,
30:45
Speaker 3: so I was like, oh God on it, and they said,
30:47
Speaker 3: don't worry, it's still going to be fine, like the
30:49
Speaker 3: surgical team all well, and they're all here. However, we're
30:54
Speaker 3: going to have to put you on a different ward
30:57
Speaker 3: pre op and post op and sorry, I had a
31:02
Speaker 3: little battery thing there pre and postop and we're going
31:05
Speaker 3: to put you on bumblebewards and I was really doesn't
31:08
Speaker 3: want to go, but we got there and they were amazing.
31:14
Speaker 3: They were so great. They were so great, Like I
31:17
Speaker 3: remember so many of the nurses we had. There was
31:20
Speaker 3: so too many to name, and they were all just
31:24
Speaker 3: so wonderful. And Dylan had his birthday there, his first birthday,
31:28
Speaker 3: that's right. And one of the nurses, I think it
31:31
Speaker 3: was Fiona. When I was asleep, she came in. She
31:38
Speaker 3: came in, well it was more than one probably, and
31:41
Speaker 3: they decorated the room.
31:43
Speaker 2: Oh no way, it.
31:44
Speaker 3: Was like balloons. There was a birthday banner, but the
31:46
Speaker 3: happy Birthday banner as well. She'd made it so it
31:49
Speaker 3: wasn't just one that had been brought the shop and
31:51
Speaker 3: stuck up because I asked the next day, I said
31:53
Speaker 3: who did this? And they were like, oh, she sat up,
31:55
Speaker 3: she sat up all night making it for you, like
31:58
Speaker 3: cutting it out. And I was like, what is going on?
32:01
Speaker 3: A huge is happy birthday? And then they came and
32:04
Speaker 3: there was they gave him a present, which I'm sure
32:07
Speaker 3: is that is, you know, gosh protocol for a child
32:09
Speaker 3: that is in but it's nice, very nice. Oh yes,
32:12
Speaker 3: But for me the present, everything was absolutely wonderful. But
32:15
Speaker 3: it was the fact that one of the nurses sat
32:17
Speaker 3: up and made that sign. I was like, and you know,
32:20
Speaker 3: had Dylan and it cut out. And a girl who
32:24
Speaker 3: I know who makes Kate, who I only knew from
32:29
Speaker 3: like zoom play readings that me and a bunch of
32:33
Speaker 3: actors did over COVID we never met in real life,
32:37
Speaker 3: she messaged me and said, can I bring you a cake?
32:40
Speaker 3: And she doesn't just make little cakes, she makes like proper,
32:44
Speaker 3: really expensive, really amazing cake. She did one recently for
32:48
Speaker 3: the Queen, like that you brought me this this massive
32:52
Speaker 3: Kate with it is unbelievable, like and it just honestly,
32:57
Speaker 3: I think, sometimes though the world, time of your life,
33:02
Speaker 3: can there are such glimmers of brightness and like you
33:08
Speaker 3: see you do sadly that you know, some people do
33:11
Speaker 3: show their true colors, and you do, you do get that,
33:15
Speaker 3: but you also see the absolute best in people, and
33:19
Speaker 3: whether that's nurses, doctors, friends that maybe you didn't realize
33:24
Speaker 3: were friends. Acquainted like it. So I do think that
33:28
Speaker 3: throughout that whole year it was the worst year of
33:32
Speaker 3: my life, but equally the best year of my life.
33:35
Speaker 2: Yes, yes, and I know what you mean that there
33:38
Speaker 2: will be a lot of people that are listening to
33:39
Speaker 2: this guy. I know exactly what you're talking about.
33:42
Speaker 3: Yeah, yeah, it's it's but but you know it's I
33:48
Speaker 3: don't want to go through it again. I'm all right,
33:51
Speaker 3: but but yeah it was. The nurses are the life
33:56
Speaker 3: blows of Gosh. They really are. They're the life blood
33:59
Speaker 3: and I and to be a nurse right now, I
34:03
Speaker 3: think with the political climate and everything, I think is
34:06
Speaker 3: really hard. So they've got to take a lot of
34:11
Speaker 3: a lot of stick all day every day, and for
34:14
Speaker 3: them to be so kind and warm, it's just I
34:17
Speaker 3: think amazing. So I'm so I'm pro pro nurse, pro.
34:24
Speaker 2: God absolutely absolutely. I mean, you're you're you're preaching to
34:28
Speaker 2: the quiet beer a little bit. Having been there but
34:34
Speaker 2: half my life, I yes, I'm very much, very much
34:38
Speaker 2: pro Gosh in every single way imaginable.
34:42
Speaker 3: Yeah.
34:42
Speaker 2: So, yes, and I as we were talking as well,
34:45
Speaker 2: you are the first person I've spoken to who's been
34:48
Speaker 2: through Gosh, which surprised me a lot. What do you
34:51
Speaker 2: name in terms of I've never met anybody who's been
34:55
Speaker 2: through Gosh.
34:56
Speaker 3: Well, I mean it's usually older Hay and things like that,
34:59
Speaker 3: which is great.
35:00
Speaker 2: Yes, older hey are brilliant. They're absolutely fantastic, one of
35:03
Speaker 2: the one of the best of what they do. But yeah,
35:06
Speaker 2: in terms of Gosh, you are the first person I've
35:09
Speaker 2: spoken to, which.
35:10
Speaker 3: Is you should definitely speak to my husband as well,
35:13
Speaker 3: because he went he went through Gosh. And how old
35:16
Speaker 3: are you do you? Mammy asking thirty two and he's
35:19
Speaker 3: thirty nine and he had I don't know if you
35:22
Speaker 3: had the same doctor he had, mister Kylie, Jonathan Kyler. Yes, human, Yes.
35:29
Speaker 2: He's the greatest man ever.
35:31
Speaker 3: Well, but do you know this? So when we when
35:34
Speaker 3: we met Professor to copy, they they spoke to Fred
35:38
Speaker 3: and they said, oh, you were here, and Fred was
35:40
Speaker 3: that I was here, you know, my whole childhood and
35:43
Speaker 3: and they said, oh, who was your surgeon and he
35:45
Speaker 3: said mister Kylie. And everyone in our surgical team was like, ah,
35:50
Speaker 3: like he was the Messiah. And then they said because
35:53
Speaker 3: we had the the sort of second and third in
35:57
Speaker 3: command on the you know, the war drounds and they said,
36:00
Speaker 3: mister dea Copy is like his protege, like mister Kylie
36:04
Speaker 3: trained mister Copy. That's amazing, like friends and so like.
36:09
Speaker 3: Often when he would comment and talk to us, he'd
36:12
Speaker 3: be like, I was just speaking to him yesterday and
36:14
Speaker 3: that like, obviously I don't know miss Kylie, but I
36:17
Speaker 3: know it meant so much to Fred's And Fred felt
36:20
Speaker 3: like we had that sort it was like a guardian
36:23
Speaker 3: angel was there and we had a funny little moment
36:28
Speaker 3: where obviously medical advancements have have improved since you know,
36:31
Speaker 3: the eighties. And Fred lifted his his jumper and said,
36:35
Speaker 3: will Dylan's scars looked like this? Mister de Coppy sort
36:39
Speaker 3: of did like a sort of glib little laugh and
36:41
Speaker 3: was like, no, they weren't. Okay, so probably looks like Fred's.
36:50
Speaker 2: Then my stole, it looks like Frid would have.
36:52
Speaker 3: He's got like a big scar across his stomach, like
36:55
Speaker 3: the middle of his stomach. Yeah, yeah, do you He
36:58
Speaker 3: has like a weird one on his knee as well,
37:00
Speaker 3: She calls his das scar. Yeah, something obviously went into
37:04
Speaker 3: his knee. We don't know. No, you don't have that one.
37:08
Speaker 2: I've got the train track that goes across.
37:11
Speaker 3: That's exactly what he's got. Yeah, I think.
37:13
Speaker 2: The thing that looks like a train track, yes, so yeah,
37:16
Speaker 2: but that's that's really good to see though. The medical
37:20
Speaker 2: advancements have taken art.
37:23
Speaker 3: Yeah, so Dylan's looks like a C section scar. It's
37:27
Speaker 3: like a lower and it's it looks exactly like my
37:29
Speaker 3: C section scar. And then obviously he has the scar
37:33
Speaker 3: where the stormer was, and then he's got like four
37:36
Speaker 3: little scars where they did the biopsies. So he has
37:41
Speaker 3: and so he has like maybe like sort of an
37:44
Speaker 3: inch big where the stormer was, and then maybe three
37:48
Speaker 3: or four inches big where obviously everything came out of. Actually,
37:54
Speaker 3: I don't think. I think if you weren't looking for it,
37:55
Speaker 3: you wouldn't see it.
37:57
Speaker 2: No, you know, I think that's the it's the thing.
38:00
Speaker 2: Especially I know mine's short segments, so it's a little
38:03
Speaker 2: bit different. Oh but if people were to see me
38:07
Speaker 2: just sort of walking around or whatever, they wouldn't they
38:10
Speaker 2: wouldn't notice. They wouldn't, they wouldn't know. Oh, he's had
38:12
Speaker 2: ten operations, he's got Hirsch promises and whatever. You know,
38:16
Speaker 2: I am, to all intents and purposes, quote unquote normal yeah.
38:21
Speaker 3: But this is the thing, isn't it is that when
38:23
Speaker 3: people find out either Fred or Dylan have hirsh proms
38:27
Speaker 3: and they're like, God, they're so normal. I'm like, yeah,
38:30
Speaker 3: but what is normal? Like there isn't a normal, Like
38:33
Speaker 3: nobody's normal, you know. So it's it's all. It's all relative,
38:39
Speaker 3: isn't it. Everything's relative?
38:41
Speaker 2: Absolutely, And just as we sort of wind down towards
38:45
Speaker 2: the end, I'm just starting to get sort of in
38:48
Speaker 2: terms of Dylan, what would you like to see sort
38:52
Speaker 2: of in the future or Dylan would you like him
38:54
Speaker 2: to become an actor like you? And then a fear
38:56
Speaker 2: of this podcast in twenty years time and talk about.
39:00
Speaker 3: I mean, I don't know. I always said that absolutely
39:02
Speaker 3: not because I know how to root all the industry
39:04
Speaker 3: is and it's a tough old industry. But I will
39:08
Speaker 3: say he does. I think he does show signs of
39:12
Speaker 3: it already. I don't know. Maybe that's okay, but like
39:15
Speaker 3: he I mean, he's not even four yet and he's
39:19
Speaker 3: he came to see me in pece Pang Goes Wrong
39:22
Speaker 3: more than once and sat through the whole thing, which
39:25
Speaker 3: is like a two hour long play. He saw it
39:27
Speaker 3: like three or four times, and then he came to
39:29
Speaker 3: see Oliver when we were in Chichester we're not open
39:32
Speaker 3: in London yet, and sat through the whole thing again
39:36
Speaker 3: and was singing the songs he acts out mister Bumble,
39:39
Speaker 3: that's his favorite character.
39:41
Speaker 2: So I'm like, oh, no, he's got it, He's got
39:43
Speaker 2: the acting monster.
39:47
Speaker 3: Maybe I just want him to be healthy and happy,
39:49
Speaker 3: Like honestly, I would love him to do yeah, like
39:52
Speaker 3: really physical things because like absolutely why not. I'd love
39:56
Speaker 3: him to be dancing and sport all that. Like, I
39:59
Speaker 3: just want him to Yeah, no one to ever know
40:03
Speaker 3: that there was or is anything inverted commas wrong with him,
40:07
Speaker 3: you know, that's my goal.
40:08
Speaker 2: Fantastic, That's brilliant. And then just for you personally, what
40:14
Speaker 2: is next for you and your acting career.
40:17
Speaker 3: So I'm just about to open in the West End
40:20
Speaker 3: with Oliver. So we did an out of town season
40:23
Speaker 3: at Chichester Festival Theater in the summer and then we've
40:26
Speaker 3: had a few weeks off and we go back into
40:29
Speaker 3: rehearsals in a couple of weeks and we open up
40:32
Speaker 3: The giel Goods in December and it's it's an incredible production.
40:37
Speaker 3: I mean, I love all of it. It's one of
40:39
Speaker 3: my favorite shows, so I'm really proud to part of it.
40:43
Speaker 3: And I get to play the mean character in Act one,
40:47
Speaker 3: but then I also blame Missus Bedron and she's the
40:49
Speaker 3: nice character and actor. So I get and I get
40:52
Speaker 3: a nice journey.
40:53
Speaker 2: Oh so you get a bit of a bit of
40:55
Speaker 2: Colum a bit column exactly exactly.
40:58
Speaker 3: Yeah, right, it's great fun.
41:02
Speaker 2: And then just lastly, again, thank you so much for
41:05
Speaker 2: all of your insight and sharing your story that I
41:08
Speaker 2: think will resonate with an awful lot of people that
41:11
Speaker 2: certainly I've spoken to that haven't been on the podcast,
41:14
Speaker 2: that sort of messaged me privately and tell me certainly
41:17
Speaker 2: things that have gone in your life that have also
41:20
Speaker 2: gone on in theirs as well.
41:21
Speaker 3: Yeah.
41:22
Speaker 2: In terms of where people can find you follow your
41:26
Speaker 2: story and Dylan's story, where can they find you?
41:30
Speaker 3: So I'm on Instagram. I have two pages. I do
41:33
Speaker 3: have the Mamma Birkett page, which I have to say
41:35
Speaker 3: I haven't used in a long time because I sort
41:37
Speaker 3: of but I should really start it back up again.
41:41
Speaker 3: So you can follow me on there, or you can
41:42
Speaker 3: follow my personal page which is j K. M. Burkett,
41:49
Speaker 3: which is b I r k Easill take, which is
41:52
Speaker 3: basically everything. So there's Dylan, there's my acting, there's all
41:55
Speaker 3: my stupid rants about you know, all sorts of things.
41:58
Speaker 3: That's the one I post on them. But I do
42:00
Speaker 3: have both. But yeah, anyone, anyone who wants to contact
42:04
Speaker 3: me or speak to me, I'm so like open and
42:08
Speaker 3: up for it. And I love to hear from other
42:11
Speaker 3: people with hers Strong's parents, with her Strong's I think
42:14
Speaker 3: it's it's great, you know, supporting numbers. I think that's
42:19
Speaker 3: how we That's just I think being a parent, but
42:23
Speaker 3: you know what I mean, but definitely a parent of
42:27
Speaker 3: a child that maybe has, you know, additional things that
42:30
Speaker 3: it's it's good. Dinner's just about to you know, you'll
42:32
Speaker 3: be starting school in September, so it's great to hear
42:34
Speaker 3: from people that have gone through the school process. So yeah,
42:37
Speaker 3: if anyone wants to chat to me, I'm so up
42:40
Speaker 3: for it.
42:41
Speaker 2: Also, thank you so so much, and I wish you
42:44
Speaker 2: the best of luck with Oliver and the best of
42:48
Speaker 2: luck with Tylan as well. Thank you so much for
42:50
Speaker 2: coming on.
42:51
Speaker 3: Thanks so much, Thanks Tom.
42:58
Speaker 1: Thank you for listening to the podcast. Find us on Instagram.
43:01
Speaker 1: Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes on
43:06
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