Latest / Tom's Hirschsprung's Podcast / Episode 46 - With Leanne Constable

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Episode 46 - With Leanne Constable · Tom's Hirschsprung's Podcast

• 0:05
  Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
• 0:08
  Speaker 1: a look into the remarkable experiences of the most inspiring
• 0:11
  Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
• 0:40
  Speaker 1: episode forty six of Tom's Hirshbrun's Podcast. I have a
• 0:44
  Speaker 1: very special guest with me all the way from Wales today.
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  Speaker 1: Welcome Leanne Gospel, Welcome to the podcast. Thank you, thanks
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  Speaker 1: so much for for coming on. As we mentioned you
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  Speaker 1: come all the way from Wales to come on the
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  Speaker 1: podcast and people might know you more from your Instagram
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  Speaker 1: account as well. Parker's journey and we are here to
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  Speaker 1: discuss Parker's journey with both Down syndrome and Hirschbrum's disease.
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  Speaker 1: And if it's all right with you, we'll start really
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  Speaker 1: from the very beginning. I know you've got several BBC
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  Speaker 1: articles out there and people have read bits and pieces
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  Speaker 1: about your story. But if you take us back to
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  Speaker 1: when Parker was born, you have three older children and
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  Speaker 1: then Parker Parker was born. Parker was born with Down
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  Speaker 1: syndrome as well. You'll talk a little bit about the
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  Speaker 1: non invasive prenatal testing.
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  Speaker 2: Yeah, so.
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  Speaker 3: It all started when I must have been about sixteen
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  Speaker 3: weeks pregnant, and first of all, midwife phoned and it was.
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  Speaker 2: I'm sorry, but.
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  Speaker 3: Your blood test it had originally a quad blood test
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  Speaker 3: then and she said, I'm sorry, that's coming back as
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  Speaker 3: high chance for Down syndrome.
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  Speaker 2: So, you know, it's silly.
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  Speaker 3: I look back now and I think how silly I was.
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  Speaker 3: But I was, you know, so upset, and I was like, oh,
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  Speaker 3: this is awful, and she said, we can offer you
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  Speaker 3: the nip ty test. So it's, yeah, a non invasive
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  Speaker 3: prenatal testing. So it was just a simple blood test
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  Speaker 3: and they extract the baby's DNA from my DNA and
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  Speaker 3: then they can test that then very cleverly, and it
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  Speaker 3: gives you sort of a nineteen nine percent accuracy, it's
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  Speaker 3: not one hundred percent. And a week later, yeah, it
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  Speaker 3: came back and they said it was ninety nine percent
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  Speaker 3: you know chance that Parker had Down syndrome. So straight
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  Speaker 3: away they wanted me to have the the invasive testing.
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  Speaker 2: What's it called. I've forgotten the word.
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  Speaker 1: I haven't got it written down.
• 3:18
  Speaker 2: The amniosynthesis, that's it.
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  Speaker 1: I was never going to remember that.
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  Speaker 3: Yeah, but I refused that because for me, you know,
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  Speaker 3: there was never there was There was never a question
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  Speaker 3: of you know, decisions to be made as the midwives
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  Speaker 3: and not so much of the midwives, but the doctors
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  Speaker 3: tried to force upon me, but it was never about that.
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  Speaker 2: So I refused, and unfortunately.
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  Speaker 3: I was offered you know, terminations a lot, and you know,
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  Speaker 3: obviously everybody's entitled to their choice, but for me, it
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  Speaker 3: was it was never about that. It was for me
• 4:00
  Speaker 3: to have the pre nattle test and it was just
• 4:02
  Speaker 3: for me to prepare myself.
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  Speaker 1: So definitely, most definitely, So you're you're offered the prenaim
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  Speaker 1: testing came back as ninety nine percent possible for down syndrome.
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  Speaker 1: Was there any kind of thought about hirshbrungs at that
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  Speaker 1: time or was it this purely after the birth?
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  Speaker 2: Yeah, it was purely after birth. I'd never heard the
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  Speaker 2: fish sprungs in my life. And funnily enough.
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  Speaker 3: Like when I was when obviously I knew that Park
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  Speaker 3: was gonna have down syndrume. I did so much research
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  Speaker 3: into predisposed conditions from from down syndrome, and hush one's
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  Speaker 3: never got mentioned in all of the research that I did. Surprisingly,
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  Speaker 3: there was a lot of talk of like, you know,
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  Speaker 3: heart defects and lots of other things, but no mention
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  Speaker 3: of hirshbrungs.
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  Speaker 2: So yeah, that was another big shock.
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  Speaker 1: That's an interesting one, I think. I don't I don't
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  Speaker 1: know whether that's something that's a lot more recent because
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  Speaker 1: I know, on the reach HD websites or the largest
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  Speaker 1: Hirshprungs charity I think in the world, there's now a
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  Speaker 1: separate part on that website for Down syndrome and Hirshprungs together.
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  Speaker 1: So it's obviously a lot more common than we once knew.
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  Speaker 1: I guess. Yeah.
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  Speaker 3: I think for the average person it's one in five thousand,
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  Speaker 3: but for a person with Down syndrome, it's one in
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  Speaker 3: one thousand.
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  Speaker 1: Oh, I didn't know that.
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  Speaker 2: Yeah.
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  Speaker 1: See, this is why I do the podcast. I learned
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  Speaker 1: so much from other people.
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  Speaker 2: Yeah.
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  Speaker 3: Yeah, so that's what our surgeon told us, was that
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  Speaker 3: it's more common. It's still, you know, not common, but
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  Speaker 3: it's more common in children with downstreams or like one
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  Speaker 3: in a thousand children.
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  Speaker 1: Given kind of a reason as to why that is,
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  Speaker 1: because on the face of it, the two the two
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  Speaker 1: conditions don't have an awful lot in common.
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  Speaker 2: Yeah, No, they've never really, I don't think anybody knows really,
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  Speaker 2: it's yeah.
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  Speaker 1: I guess there's a lot more research to be.
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  Speaker 2: Done, a lot more, yeah, one hundred percent, so much more.
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  Speaker 1: Hopefully that will most certainly come in time. I know
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  Speaker 1: that you've said before that what you thought about Down
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  Speaker 1: syndrome initially and what you know now are sort of
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  Speaker 1: completely different. I know, if you've had several articles on
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  Speaker 1: the BBC sort of written about that. What what did
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  Speaker 1: you mean sort of by that?
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  Speaker 3: So I think being I think years ago, unfortunately, going
• 6:55
  Speaker 3: back to the nineteen eighties, so many people with Down
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  Speaker 3: syndrome were often institutionalized. Parents were told that their children
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  Speaker 3: would never walk talk of any quality of life, and
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  Speaker 3: they were best put in institutions, and then unfortunately they
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  Speaker 3: were never given the opportunities the same as you or I.
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  Speaker 3: And ever since, you know, that narrative has changed and
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  Speaker 3: people are realizing, no, people with Down syndrome they can learn,
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  Speaker 3: they can live, you know, good lives.
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  Speaker 2: And I just had that.
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  Speaker 3: Sort of predispose, that really old image of a person
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  Speaker 3: with Down syndrome stuck in my head, and unfortunately that
• 7:46
  Speaker 3: was an image of somebody you'd never been given an opportunity,
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  Speaker 3: you know, and it's it's really sad.
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  Speaker 1: So yeah, but if that's all you've ever seen, I
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  Speaker 1: guess that's all you're ever going to not So it's
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  Speaker 1: it's not not uncommon to think, oh, actually I've seen this,
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  Speaker 1: so this is this is what's going to happen type
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  Speaker 1: of thing. Wow. Yeah, you said you did quite a
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  Speaker 1: lot of research when Parker was was initially diagnosed. What
• 8:17
  Speaker 1: kind of things did you did you find out from
• 8:20
  Speaker 1: from your research?
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  Speaker 2: So?
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  Speaker 3: I found a wonderful charity called Positive about Down Syndrome
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  Speaker 3: and they they had a group for ladies who were
• 8:36
  Speaker 3: pregnant with a confirmed or suspected diagnosis of Down syndrome,
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  Speaker 3: and they shared so much information and then just generally
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  Speaker 3: then like wouldn't change a thing. Charity, all the different
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  Speaker 3: charities out there, and you know, people sharing their stories.
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  Speaker 3: I remember seeing a little girl Facebook called Daisy and
• 9:03
  Speaker 3: I was just like, wow, you know, it's it's not
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  Speaker 3: this big scary, you know diagnosis that you know you
• 9:12
  Speaker 3: think it is. So yeah, it was just Internet mainly
• 9:18
  Speaker 3: because we were in COVID as well, couldn't go anywhere.
• 9:21
  Speaker 1: That's true, that's true. Thing. A lot of people jumped
• 9:24
  Speaker 1: on jumped on social media a lot at that time,
• 9:28
  Speaker 1: mainly to share things like baking stories. I think that
• 9:31
  Speaker 1: a lot of people got into baking over COVID. Yeah,
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  Speaker 1: so yeah, I think that that was what social media
• 9:36
  Speaker 1: was kind of full of from what from what I
• 9:38
  Speaker 1: remember anyway. But so because did the research found out
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  Speaker 1: quite a bit and as we've seen via your your Instagram,
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  Speaker 1: Parker is absolutely thriving, isn't he.
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  Speaker 3: Yeah, yeah, he's doing brilliant. You know, he's such a
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  Speaker 3: character and he's just you know, he just just need
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  Speaker 3: you know, I just treated him the same as I
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  Speaker 3: treated all of my other children.
• 10:01
  Speaker 1: You know.
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  Speaker 3: He's and yeah, you know, things are you know, slightly
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  Speaker 3: different and things take a little bit of time, but
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  Speaker 3: it's just a case of treating him the same as
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  Speaker 3: my other children. You know, things do take longer, but
• 10:17
  Speaker 3: we call it the scenic group and it's a lot
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  Speaker 3: more beautiful as really.
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  Speaker 1: That's absolutely fantastic. That's brilliant. And also if I may
• 10:27
  Speaker 1: move on to Hirshbrun's as well. So Parker was taken
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  Speaker 1: to Cardiff Hospital. What age roughly was he was he diagnosed.
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  Speaker 3: So he was born and on the eighth of April,
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  Speaker 3: and originally again because of the Down syndrome diagnosis, I've
• 10:50
  Speaker 3: done a lot of research about, you know, problems, and
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  Speaker 3: I was amazed because he was born at thirty six
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  Speaker 3: weeks because mike placenta had started to face and he
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  Speaker 3: came out and he was doing amazing. He didn't need
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  Speaker 3: no help breathing, he was taking his bottles, so all
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  Speaker 3: the fears that I had originally they were I was
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  Speaker 3: just like, wow, he's doing, you know, absolutely amazing. We
• 11:20
  Speaker 3: got taken down into the ward and they were all saying,
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  Speaker 3: you know, oh, you should be home.
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  Speaker 2: Within a day or two. And after about i'd.
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  Speaker 3: Say the first night he was born, I had to
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  Speaker 3: set my alarm to keep waking me up because he
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  Speaker 3: wasn't waking for feeds. And I was like, right, okay,
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  Speaker 3: that's fine, and I was feeding him. And then by
• 11:44
  Speaker 3: the next day he was just not taking his feeds
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  Speaker 3: and he was being really sick. And I kept saying
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  Speaker 3: to them, he hasn't passed the maconium and they were.
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  Speaker 2: Like, oh, it's okay, it's okay. I can take you know.
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  Speaker 3: Up forty eight hours and I was like, no, he's
• 12:02
  Speaker 3: my fourth child, I know mconium usually comes within you know,
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  Speaker 3: a few hours, and they were saying, you know, no, no, no,
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  Speaker 3: it's fine. And then luckily, really that because Parker had
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  Speaker 3: the down syndrome diagnosis or the nipty diagnosis, they hadn't
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  Speaker 3: fully confirmed it at that point, but I knew.
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  Speaker 2: I knew as soon as he was born anyway.
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  Speaker 3: But they were giving him a heart scan. So the
• 12:34
  Speaker 3: consultant came down to give him a heart scan and
• 12:39
  Speaker 3: she was asking me, you know, how is he doing?
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  Speaker 3: And I said, he hasn't pulled and she was like hmm,
• 12:44
  Speaker 3: and she said like how old? How He must have
• 12:47
  Speaker 3: been about forty eight hours old at this point, and
• 12:50
  Speaker 3: I said, you know, he's not feeding.
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  Speaker 2: There's something, there's something not right here.
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  Speaker 3: And straight away she examined him and she said, I
• 13:00
  Speaker 3: think he's got hirshpruings.
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  Speaker 2: And I was like, what what's that? You know, what
• 13:08
  Speaker 2: a name?
• 13:10
  Speaker 1: I think I'm going to struggle to spell that the future.
• 13:13
  Speaker 3: Yeah, yeah, And luckily I was blessed with an amazing
• 13:18
  Speaker 3: consultant until just knew straight away. You know, she said,
• 13:23
  Speaker 3: you know, I can't one hundred percent tell you that,
• 13:26
  Speaker 3: but this is what I think it is. And she said,
• 13:29
  Speaker 3: I'm sorry, I'm going to have to take him up
• 13:31
  Speaker 3: to the nicke.
• 13:33
  Speaker 2: And that was it. That was the beginning then of
• 13:37
  Speaker 2: our hushpruings journey.
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  Speaker 1: Really wow, I mean it showed all the classic signs
• 13:44
  Speaker 1: of hirshbrungs from the people I've spoken to before. That
• 13:49
  Speaker 1: then all the signs I mean, I showed thirty odd
• 13:51
  Speaker 1: years ago of not feeding, not passing the maconium, et cetera,
• 13:57
  Speaker 1: et cetera, all of the classic signs. But I guess if,
• 14:01
  Speaker 1: like so many people who are diagnosed with hersh bruns,
• 14:05
  Speaker 1: my parents included, had never heard of the condition before,
• 14:08
  Speaker 1: so you wouldn't necessarily know what to look for.
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  Speaker 2: I guess, yeah, and so many doctors have never heard
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  Speaker 2: of it.
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  Speaker 1: No, that's very Trueue.
• 14:19
  Speaker 2: Many doctors haven't.
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  Speaker 1: You.
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  Speaker 3: Like I said, I know, I was lucky that I
• 14:23
  Speaker 3: had a good consultant and she you.
• 14:25
  Speaker 2: Know, she knew her stuff.
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  Speaker 3: You know, we were really lucky because he could have
• 14:31
  Speaker 3: ended up getting a lot more poorly had she not.
• 14:34
  Speaker 2: Listened to me.
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  Speaker 1: Absolutely, And I think that's a really good point you
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  Speaker 1: make as well. But again, I happened with you, and
• 14:41
  Speaker 1: happened with a lot of parents as well the mother's
• 14:44
  Speaker 1: instinct and going I think something isn't right. And it
• 14:50
  Speaker 1: did sound as though that you had people that would
• 14:52
  Speaker 1: listen to you. I know, I've spoken to a lot
• 14:55
  Speaker 1: of people who have really had to fight and go
• 14:58
  Speaker 1: I know something's wrong and keep getting told no, no, no,
• 15:00
  Speaker 1: it's fine, it's fine, it's fine. Yeah, but you know,
• 15:03
  Speaker 1: don't you you know something's not right? Yeah, you know.
• 15:07
  Speaker 3: I can remember I was trying to wake him up
• 15:11
  Speaker 3: so much.
• 15:12
  Speaker 2: I was. I was even you know, I was.
• 15:15
  Speaker 3: Trying to train everything possible to try and wake him
• 15:19
  Speaker 3: because he was just sore, sleepy, and you know, I
• 15:24
  Speaker 3: was like barko, you know, I was trying to wash
• 15:27
  Speaker 3: him and everything, and you just wouldn't wake And I
• 15:31
  Speaker 3: was like, this is not right.
• 15:33
  Speaker 1: But that's another classic sign, isn't it of because it
• 15:36
  Speaker 1: happened with me as well that sort of about three weeks,
• 15:39
  Speaker 1: I was very drowsy, didn't feed, very very drowsy, very sleepy.
• 15:45
  Speaker 1: I don't exactly know why. I don't want to speculate
• 15:48
  Speaker 1: as to why, rather though, like rather than speculate, but yeah,
• 15:53
  Speaker 1: drowsy is definitely one of the things that I've heard
• 15:56
  Speaker 1: from it happened to me as well. But yeah, thank
• 16:00
  Speaker 1: Heaven for mother's instinct.
• 16:01
  Speaker 2: I guess, yes, yeah, and good doctors who listened to parents.
• 16:07
  Speaker 1: Very true, very very true. So he was was taken
• 16:11
  Speaker 1: to Cardiff at that point.
• 16:14
  Speaker 3: Yeah, yeah, he was born in Swansea and they took
• 16:20
  Speaker 3: him to the Nicole Win Swansea first, but our local
• 16:24
  Speaker 3: hospital is not is not equipped to deal with sprungs,
• 16:28
  Speaker 3: so he was ambulanced then up to Cardiff and then
• 16:35
  Speaker 3: we were in Gardiff for a good few weeks before
• 16:38
  Speaker 3: we finally then had the confirmed diagnosis of fish spruns.
• 16:45
  Speaker 1: Syndrome as well. Absolutely absolutely, And I know you mentioned
• 16:50
  Speaker 1: as well a little bit more about the Ronald Dolls charities.
• 16:55
  Speaker 1: In a couple of weeks time, as people are hearing this,
• 17:00
  Speaker 1: I do have somebody from Ronald McDonald headed Marketing coming
• 17:03
  Speaker 1: on to talk about everything that they do, because I
• 17:07
  Speaker 1: hear so many people talk to me about the great
• 17:10
  Speaker 1: things that they do, and I thought, well, why don't
• 17:13
  Speaker 1: I have somebody on who will know what they're talking
• 17:16
  Speaker 1: about rather than me who's knowing things third hand. But
• 17:20
  Speaker 1: I know you've mentioned Ronald McDonald before. Would you like
• 17:23
  Speaker 1: to talk a little bit more about your experience.
• 17:25
  Speaker 3: Then, Yeah, to be honest, I'd never even realized do
• 17:31
  Speaker 3: you go into McDonald's and you see the little house
• 17:34
  Speaker 3: things of the the checkpoints and you can put you know,
• 17:38
  Speaker 3: And I never really knew what they did, and I thought,
• 17:42
  Speaker 3: do they really do much? That they are outstanding? Absolutely outstanding.
• 17:48
  Speaker 3: When we got transferred to Cardiff again, it was in
• 17:51
  Speaker 3: the middle of COVID, so it was an absolute nightmare.
• 17:57
  Speaker 2: We didn't know, you know, it was a good you know, it's.
• 18:02
  Speaker 3: A good hours drive from our home and I didn't
• 18:09
  Speaker 3: want to be away from Parker for a second, let
• 18:11
  Speaker 3: alone having to drive, you know, and I did a
• 18:15
  Speaker 3: cesarean as well. So yeah, and they were saying, you know,
• 18:21
  Speaker 3: we don't know, you know, where you're going to stay
• 18:25
  Speaker 3: and that was Swansea. And then when we got to Cardiff,
• 18:29
  Speaker 3: they said, look, we've got Ronald McDonald's across the road.
• 18:33
  Speaker 2: We can do an application and you.
• 18:37
  Speaker 3: Know, fingers crossed they've got space for you, and they
• 18:40
  Speaker 3: did and they were absolutely amazing. It was just, you know,
• 18:45
  Speaker 3: it just took away so much stress. It would have
• 18:51
  Speaker 3: been even better if it wasn't COVID, because my other
• 18:55
  Speaker 3: kids couldn't come up on things. No, but that was
• 18:58
  Speaker 3: COVID restrictions, you know, but it was literally a storm
• 19:02
  Speaker 3: throw from the hospital.
• 19:04
  Speaker 2: You know.
• 19:04
  Speaker 3: We had a lovely, you know, nice room, you had kitchens,
• 19:08
  Speaker 3: you could pick yourself food, and it was just unbelievable
• 19:13
  Speaker 3: because I just couldn't believe that a charity actually did
• 19:16
  Speaker 3: this for parents and took away all that stress, you know,
• 19:22
  Speaker 3: so I could just concentrate on, you know, getting Parker
• 19:26
  Speaker 3: better and getting us home.
• 19:28
  Speaker 1: Really, so absolutely, I mean that's the thing that they do, really,
• 19:32
  Speaker 1: I mean, they let you concentrate on the most important things,
• 19:35
  Speaker 1: I guess, rather than worry about where am I going
• 19:38
  Speaker 1: to put a hotel, where am I going to do this?
• 19:40
  Speaker 1: And what we eat and yeah, et cetera, et cetera.
• 19:43
  Speaker 1: And I like you as well, I hadn't hadn't really
• 19:46
  Speaker 1: heard of before starting this podcast. Yeah, but I think
• 19:51
  Speaker 1: in the UK they've been around thirty four years, and
• 19:54
  Speaker 1: I think worldwide the just celebrated fifty years. So having
• 19:58
  Speaker 1: around sort of a long, well reasonable amount of time.
• 20:04
  Speaker 1: But for someone like me, he's thirty two, wouldn't necessarily
• 20:06
  Speaker 1: have had the wrong houses Great Ormond Street. So yeah,
• 20:13
  Speaker 1: I mean I'm all for publicizing them as much as possible. Yeah,
• 20:17
  Speaker 1: you know, fantastic.
• 20:19
  Speaker 3: We were u being cardiff for nearly three weeks. Can
• 20:22
  Speaker 3: you imagine how much it would have cost us to
• 20:25
  Speaker 3: have stayed in a hotel? Yeah, you know, and yeah,
• 20:31
  Speaker 3: nobody's got that, you know, unless you're really rich, but
• 20:34
  Speaker 3: nobody's got that kind of money. And you know, and
• 20:37
  Speaker 3: it was just the little things that they do as well.
• 20:39
  Speaker 3: You know, just when when you get then they've got
• 20:43
  Speaker 3: like little packages of like a tut brush and tusk.
• 20:46
  Speaker 2: Paste and.
• 20:48
  Speaker 1: Yeah, it's nice.
• 20:50
  Speaker 2: Yeah.
• 20:51
  Speaker 3: And they put like things in the kitchen so they're like,
• 20:55
  Speaker 3: you know, things that you can just help yourself too,
• 20:57
  Speaker 3: you know, if they got some pop noodles or do
• 21:01
  Speaker 3: you know what I.
• 21:01
  Speaker 1: Mean, just a little yeah, yeah going type thing.
• 21:06
  Speaker 2: Yeah.
• 21:07
  Speaker 3: And it was around Easter time as well that Parker
• 21:09
  Speaker 3: was born, so they like like Easter eggs and they
• 21:11
  Speaker 3: were like, have any strikes.
• 21:14
  Speaker 1: So nice. That's you know, again, it's a little bit
• 21:18
  Speaker 1: of a I guess distraction in a way, isn't it,
• 21:22
  Speaker 1: or a helpful distraction in a way from from everything
• 21:25
  Speaker 1: that's going on. I didn't know they did that. That's
• 21:27
  Speaker 1: that's so nice. Yeah.
• 21:31
  Speaker 3: Yeah, And I think they also like connect with other
• 21:36
  Speaker 3: like local businesses and things. So then they are the
• 21:39
  Speaker 3: local businesses. If they've got like things left over, they'll
• 21:44
  Speaker 3: take them then to the Ronal McDonald's house and so
• 21:47
  Speaker 3: you yeah, you get and there's like lots of baby
• 21:51
  Speaker 3: things as well, so like they give me like baby
• 21:54
  Speaker 3: bests and body washes and yeah, it was brilliant.
• 21:59
  Speaker 2: It was.
• 22:01
  Speaker 1: Really look after you then, yes, yeah, that's brilliant. No,
• 22:06
  Speaker 1: thank you so much for that because I didn't know
• 22:08
  Speaker 1: half of that stuff. Thank you, thank you so much
• 22:11
  Speaker 1: for sharing. If we bring back to Parker for a
• 22:16
  Speaker 1: little bit as well. So at this point, he's being
• 22:19
  Speaker 1: diagnosed with Hirshprungs and down syndrome. Was it short short
• 22:25
  Speaker 1: segment hirshprungs or was it different type?
• 22:30
  Speaker 2: It was a short segment.
• 22:33
  Speaker 1: Yeah, so I think it's around eighty percent of people
• 22:36
  Speaker 1: who are diagnosed with Hirshbruns are diagnosed with short segment,
• 22:39
  Speaker 1: which is what I have as well. Yeah, so so
• 22:43
  Speaker 1: diagnosed a short segment. At what point then did you?
• 22:46
  Speaker 1: Were you able to come home.
• 22:51
  Speaker 3: Once we'd had the diagnosis and then they because we'd
• 22:58
  Speaker 3: sport Parker sort early, he didn't have to have a
• 23:02
  Speaker 3: stormer or anything. So they trained me how to do
• 23:06
  Speaker 3: bawel war shouts. So once I was fully trained and
• 23:13
  Speaker 3: confident to do that, we were allowed to go home
• 23:17
  Speaker 3: there and then wait for surgery.
• 23:20
  Speaker 1: That's fantastic. It's fantastic that they caught it early, I guess.
• 23:24
  Speaker 1: But again going back to what we said before about
• 23:26
  Speaker 1: mother's instinct and about so catching it early, main you
• 23:31
  Speaker 1: don't have to have the storma, yeah, et cetera. That's
• 23:35
  Speaker 1: that's really really good to hear.
• 23:37
  Speaker 2: Yeah.
• 23:37
  Speaker 1: So then so then what age roughly did he had
• 23:42
  Speaker 1: his pull through?
• 23:44
  Speaker 2: He was twelve weeks.
• 23:46
  Speaker 1: Twelve weeks, okay, yeah, pull through and then absolutely fine
• 23:52
  Speaker 1: since then no, no.
• 23:58
  Speaker 2: No, that's another story.
• 23:59
  Speaker 3: And fortunately, yeah, so we went home doing the bowl washouts.
• 24:07
  Speaker 3: Twelve weeks. We thought, great cultural surgery dounting. You know,
• 24:14
  Speaker 3: when you're putting your child through such major surgery and
• 24:20
  Speaker 3: when they tell you how long they're going to be
• 24:21
  Speaker 3: under as well, like our surgeon said, you know, expect
• 24:26
  Speaker 3: to be he's going to be under for about seven
• 24:29
  Speaker 3: to eight hours.
• 24:29
  Speaker 2: I was like, what you know, that's a long time,
• 24:33
  Speaker 2: isn't it. So he had the surgery and.
• 24:40
  Speaker 3: Originally we thought everything was pretty good, but within about
• 24:47
  Speaker 3: six weeks we were back in the hospital. Unfortunately, I
• 24:54
  Speaker 3: kept saying he'd we'd been going back and forth to
• 24:58
  Speaker 3: the hospital and they'd try different things. What's it called
• 25:05
  Speaker 3: the dilation, which I can't even think about because it
• 25:10
  Speaker 3: I think I got PTSD from that.
• 25:12
  Speaker 2: It's just traumatizing.
• 25:16
  Speaker 3: And about a couple of weeks after that then I.
• 25:20
  Speaker 2: We're really lucky as well.
• 25:21
  Speaker 3: And with Cardiff Hospital, our surgeon is amazing, Oliver Jackson,
• 25:26
  Speaker 3: and he we've literally we've got all of the team
• 25:32
  Speaker 3: on like speed dial. We can ring them at any time,
• 25:36
  Speaker 3: you know. So I phoned them and I said, look,
• 25:41
  Speaker 3: he's being really really sicky. His stomach looks really defended.
• 25:48
  Speaker 3: So we were straight up to Cardiff.
• 25:49
  Speaker 2: Yeah, and that was the first.
• 25:50
  Speaker 3: Of our little stays in Cardiff again, which was there's
• 25:55
  Speaker 3: been quite a few. Yeah, and yeah, they examined him
• 26:01
  Speaker 3: and yeah, it turns out that he was doing tiny
• 26:06
  Speaker 3: little bit, but he just wasn't empty and himself. So yeah,
• 26:11
  Speaker 3: ever since then, we've been been back to the drawing
• 26:14
  Speaker 3: board really and we rely we still rely on Bubbah
• 26:19
  Speaker 3: wall shows.
• 26:21
  Speaker 2: Yeah, yeah, so.
• 26:23
  Speaker 1: That's definitely it's not not an uncommon story that I've
• 26:28
  Speaker 1: heard from several people, you know, myself included at the Washouse.
• 26:34
  Speaker 1: So I was about nine, then had the ace malone
• 26:37
  Speaker 1: stone until I was twenty three, I think. Yeah, so yes,
• 26:42
  Speaker 1: so not not an uncommon story by any stretch of
• 26:45
  Speaker 1: the imagination. But in terms of so again sort of
• 26:50
  Speaker 1: flipping back as well, I'd like to talk a little
• 26:55
  Speaker 1: bit about macaton as well. Yeah, because it's something that
• 26:59
  Speaker 1: you've mentioned quite a bit, and again something that I've
• 27:02
  Speaker 1: done a little bit of research on but wasn't sort
• 27:05
  Speaker 1: of one hundred percent sure certainly when I heard the
• 27:07
  Speaker 1: word for the first time. Yeah, how as or certainly
• 27:11
  Speaker 1: what is macaton and how has it helped Parker?
• 27:15
  Speaker 3: Market On again has just been wonderful. So with with
• 27:21
  Speaker 3: Down syndrome, it's expected to have a speech delay and
• 27:26
  Speaker 3: obviously learning difficulties. So I started looking into marketon from
• 27:34
  Speaker 3: a very early age. And it's basically it's a simplified
• 27:38
  Speaker 3: form of sign language. So whereas BSL is a language
• 27:45
  Speaker 3: in its own right, Markeaton is just a simplified form.
• 27:51
  Speaker 3: And yeah, so I've I started doing macaton with Parker
• 27:57
  Speaker 3: from probably about six months and now he's absolutely flying
• 28:04
  Speaker 3: with it. You know, he does all the signs for
• 28:07
  Speaker 3: so he can't verbally speak verbally communicate, Frea can communicate
• 28:12
  Speaker 3: through Macaton and that is just you know, it's just brilliant.
• 28:18
  Speaker 3: Just so he can communicate. You know, he can tell
• 28:22
  Speaker 3: me when he's hungry or when he's thirsty, and you know,
• 28:26
  Speaker 3: we he signs all the animals and all the colors
• 28:30
  Speaker 3: and you know, I'm going on to a level two
• 28:34
  Speaker 3: course actually on the weekend because he's caught up with me.
• 28:38
  Speaker 1: Now he knows he knows too much.
• 28:41
  Speaker 3: Yeah, you know, you know, I'm like, right, I need
• 28:44
  Speaker 3: to get my game on now I get learning some more.
• 28:48
  Speaker 1: That's fantastic. Well, that's really good to hear that he's progressed.
• 28:52
  Speaker 1: He sounds like he's progressed at an enormous rate.
• 28:55
  Speaker 3: Yeah, yeah, he's It seemed to it took a while
• 29:00
  Speaker 3: at first where for a long time he didn't sort
• 29:03
  Speaker 3: of quite grasp, but if he used the signs that
• 29:07
  Speaker 3: you know, it was, I'd understand and all of a
• 29:11
  Speaker 3: sudden then it just clicked and he was like, oh sheep.
• 29:15
  Speaker 2: And a cow.
• 29:19
  Speaker 3: Yeah, yeah, And he's just doing really well now. Brever
• 29:24
  Speaker 3: the only thing is is that, like you said, it's
• 29:26
  Speaker 3: not that well known. So when you've started school now,
• 29:32
  Speaker 3: the teachers don't know Marcaton, which is a shame. I've
• 29:35
  Speaker 3: have asked them to go on courses which they are
• 29:39
  Speaker 3: planning on because he goes to mainstream school.
• 29:44
  Speaker 2: But you know, they're sort of saying to me, all
• 29:46
  Speaker 2: what what's this sign? And what's that signe.
• 29:51
  Speaker 1: Yeah, it's you are right inside. Actually, that's something that
• 29:57
  Speaker 1: you know, it's very very important. You know, if you
• 29:59
  Speaker 1: if you have somebody that you know he's coming into
• 30:01
  Speaker 1: your class that uses Macaton, then knowing I mean obviously
• 30:08
  Speaker 1: knowing everything is not going to be you know, possible necessarily,
• 30:11
  Speaker 1: but knowing that the basics and the you know when
• 30:15
  Speaker 1: you said you're hungry, thirsty, et cetera, et cetera, you know,
• 30:19
  Speaker 1: knowing those I think is something that I think that's
• 30:23
  Speaker 1: that that would be incredibly important.
• 30:25
  Speaker 3: Yeah, and I think for me as well, with the Hirshbruns,
• 30:31
  Speaker 3: what always bothered me the most was him not being
• 30:35
  Speaker 3: able to tell me when he was in pain or
• 30:37
  Speaker 3: when he was uncomfortable.
• 30:41
  Speaker 2: So like now a lot of the time.
• 30:43
  Speaker 3: He will sort of he'll sort of guide my hands
• 30:46
  Speaker 3: and like put it to his barely, so I sort
• 30:48
  Speaker 3: of know then when he you know, when he's uncomfortable
• 30:54
  Speaker 3: and when he's in pain.
• 30:55
  Speaker 1: Really, so yeah, that that is good that he has
• 31:00
  Speaker 1: he has learned that, which is so you know so now.
• 31:04
  Speaker 2: No, yeah, yeah, because it's a Minefield's old Hirsch.
• 31:11
  Speaker 1: Yeah, yeah, it certainly can be. It certainly can be. Indeed,
• 31:16
  Speaker 1: another thing that I wanted to chat to you about
• 31:19
  Speaker 1: is Parker's modeling career because he is he is a
• 31:25
  Speaker 1: model as well, and how how did that sort of
• 31:29
  Speaker 1: come about?
• 31:32
  Speaker 3: So it all started when when Parker was in hospital,
• 31:37
  Speaker 3: when he got taken to Cardiff. First of all, my
• 31:40
  Speaker 3: older daughters created an Instagram account for him, so I
• 31:47
  Speaker 3: didn't at first, I didn't really post on it, and
• 31:50
  Speaker 3: then I started posting on it a bit and I
• 31:54
  Speaker 3: happened to come.
• 31:54
  Speaker 2: Across and a modeling agency that.
• 32:00
  Speaker 3: Purely they only represent so individuals with physical or you know,
• 32:09
  Speaker 3: all disabilities basically, and I thought, wow, that's amazing, that's
• 32:14
  Speaker 3: really good, you know, because you know, you don't often see,
• 32:20
  Speaker 3: you know, on high street stores and things, pictures of
• 32:24
  Speaker 3: people with differences, you know, visibally physically different. So anyway,
• 32:29
  Speaker 3: I applied and they were like, yeah, we'd love Parker
• 32:33
  Speaker 3: And in the next minute he was doing shoots for
• 32:37
  Speaker 3: Sainsbury's and.
• 32:38
  Speaker 2: Pre Mark and Jewels. Yeah, so it was it was
• 32:46
  Speaker 2: just a bit bonkers. Really. He hasn't done He's done
• 32:51
  Speaker 2: a lot of Pamper's adverts as well. They asked him
• 32:57
  Speaker 2: to ask us to make like top videos and things
• 33:01
  Speaker 2: for pans. Yeah, so it's great fun, do you know
• 33:06
  Speaker 2: what I mean.
• 33:07
  Speaker 1: So that's fantastic then all enjoying it all. He's enjoying it.
• 33:12
  Speaker 2: Yeah, yeah, he loves he loves being in front of
• 33:14
  Speaker 2: the camera.
• 33:17
  Speaker 3: Yeah, yeah, just he just sits there, looks gorgeous and
• 33:22
  Speaker 3: we're all like singing and prancing around.
• 33:25
  Speaker 2: Likes making him smile.
• 33:29
  Speaker 1: But there are some on your your Instagram account of him,
• 33:33
  Speaker 1: of him modeling. He does look like he's having a
• 33:35
  Speaker 1: lovely time.
• 33:36
  Speaker 2: Yeah, yeah, he does. You know, he does enjoy it
• 33:40
  Speaker 2: and and and the things then that like we do
• 33:44
  Speaker 2: at home. You know, he's just like it's just being
• 33:47
  Speaker 2: at home then and there, and we're just doing different
• 33:49
  Speaker 2: things as well.
• 33:50
  Speaker 1: So that's amazing. And if we talk about as well,
• 33:55
  Speaker 1: your your Instagram account, because you do have a fair
• 33:58
  Speaker 1: few people who were very interested in Parker and your journey,
• 34:02
  Speaker 1: his journey and what you're up to. Everything you said
• 34:06
  Speaker 1: that your daughter set it up and everything. Yeah, I
• 34:11
  Speaker 1: mean so as of today, it's about one hundred and
• 34:13
  Speaker 1: thirty odd thousand followers. Did you ever think you'd get
• 34:17
  Speaker 1: sort of so many people invested?
• 34:22
  Speaker 2: Never in a million years.
• 34:25
  Speaker 3: I still I just I still think to myself, Wow,
• 34:29
  Speaker 3: you know, how did that happen? I really, you know,
• 34:34
  Speaker 3: it's just mad. My daughter's set it up. It was
• 34:38
  Speaker 3: just sort of a way to update people with how
• 34:42
  Speaker 3: Parker was doing and stuff. And they did it at
• 34:48
  Speaker 3: first and then they said, oh, ma'am, if you want to.
• 34:51
  Speaker 2: Take over it.
• 34:52
  Speaker 3: So I was like, right, okay, And I was part
• 34:55
  Speaker 3: of the charity again Positive about Down Syndrome, and I
• 34:58
  Speaker 3: think it was like down Syndrome awhere Awareness Month, and
• 35:02
  Speaker 3: I thought, do you know what, I'm gonna start posting
• 35:06
  Speaker 3: because do you know, when I was pregnant, it was
• 35:11
  Speaker 3: finding accounts and finding people who were telling the real
• 35:15
  Speaker 3: story of down syndrome, and I thought, I just share
• 35:20
  Speaker 3: our story, you know, And yeah, and after a while
• 35:24
  Speaker 3: it just went a bit crazy.
• 35:26
  Speaker 1: It has can you kind of, I guess pinpoint sort
• 35:30
  Speaker 1: of at what point it really started blowing up.
• 35:34
  Speaker 3: So I decided to make a TikTok account as well,
• 35:38
  Speaker 3: and we made a TikTok account, and I think one
• 35:43
  Speaker 3: of the one video that I made it was all
• 35:46
  Speaker 3: about my diagnosis of Pakistan Norss of down syndrome and
• 35:53
  Speaker 3: a lot of his hirshbruns stories because I raised awareness
• 35:57
  Speaker 3: about hushbruns as well on his account, and they went
• 36:02
  Speaker 3: quite viral and they had like, you know, a good
• 36:04
  Speaker 3: few million views, and I was like, wow, you know,
• 36:07
  Speaker 3: that's massive, you know. And then Instagram there was just
• 36:14
  Speaker 3: it all. I shared one video Parker and it went crazy.
• 36:22
  Speaker 3: He had I think the video had.
• 36:24
  Speaker 2: Like twenty eight million views. What yeah, wow, yeah.
• 36:30
  Speaker 3: Yeah, it was twenty eight million views. And it just
• 36:34
  Speaker 3: went from there. Really, it just started.
• 36:37
  Speaker 2: You know, not every video goes viral, do you know
• 36:41
  Speaker 2: what I mean?
• 36:43
  Speaker 1: No, Unfortunately, it'd be really easy if it did.
• 36:47
  Speaker 3: Yeah, yeah, but you know, sometimes and yeah, it just
• 36:53
  Speaker 3: grows really so it's just you know, I share like
• 36:56
  Speaker 3: a lot of stories about hush sprung. So I did
• 36:59
  Speaker 3: a video for Hushprungs Awareness Month in September and that
• 37:05
  Speaker 3: did really well and people just like you know, like
• 37:09
  Speaker 3: to hear the stories and and then once they start
• 37:12
  Speaker 3: following them, they just want to like see what he's
• 37:15
  Speaker 3: up to on a daily basis.
• 37:18
  Speaker 1: And I think as well, people love the positivity. I mean,
• 37:21
  Speaker 1: certainly I've seen that across Instagram and a lot of
• 37:25
  Speaker 1: things that I see. I think people more drawn to
• 37:28
  Speaker 1: positive stuff. Yeah, you know, we're all well aware that,
• 37:32
  Speaker 1: certainly with Hirshbrungs not everything's going to be positive and
• 37:36
  Speaker 1: we and we we know that full well. And yeah,
• 37:39
  Speaker 1: I think you know, it's quite there's a lot of
• 37:43
  Speaker 1: people who share things that are very real life as well.
• 37:46
  Speaker 1: This happens in my life, which isn't so great, But
• 37:49
  Speaker 1: then this also happens in my life, which is fantastic.
• 37:51
  Speaker 1: So I think the balance and getting the balance right,
• 37:55
  Speaker 1: certainly from what I've seen from your account, is fantastic.
• 37:58
  Speaker 2: Yeah, and that's what I like to do.
• 38:00
  Speaker 1: You know.
• 38:00
  Speaker 2: It's like with down syndrome, I'm like, yeah, no, it's
• 38:05
  Speaker 2: not all a bed of roads. You know, it's not
• 38:08
  Speaker 2: all perfect.
• 38:11
  Speaker 3: But it's just different and different is absolutely fine. And
• 38:16
  Speaker 3: that's what people have where I think when you receive
• 38:20
  Speaker 3: any kind of diagnosis, you know, it's the difference. You're like, oh,
• 38:25
  Speaker 3: I'm not like you know, John down the road, and
• 38:30
  Speaker 3: but that's absolutely fine, and accepting that different is just
• 38:33
  Speaker 3: perfectly normal, do you know what I mean? It's and
• 38:38
  Speaker 3: that's what I try and do is just yeah, it's
• 38:42
  Speaker 3: not you know, Parker is like I said, you know,
• 38:46
  Speaker 3: you'll be four now in April, and no he's not
• 38:50
  Speaker 3: walking yet and he's not talking yet. But that's absolutely fine.
• 38:54
  Speaker 3: It's do you know what I mean?
• 38:56
  Speaker 2: When he gets there, he gets there, what's the us?
• 38:59
  Speaker 3: You know, he's loving life and I'm loving life with him,
• 39:03
  Speaker 3: So what's the problem.
• 39:05
  Speaker 1: And that's the most important thing. That's the most important thing.
• 39:09
  Speaker 1: Is he having fun? Yes, brilliant. You know everything else
• 39:13
  Speaker 1: you said, you know will happen in its own sweet time.
• 39:17
  Speaker 2: Yeah, And I.
• 39:18
  Speaker 1: Think that's that's absolutely absolutely And just on on Parker
• 39:23
  Speaker 1: as well as we sort of wrapped towards the end,
• 39:26
  Speaker 1: what would you like to see sort of for Parker
• 39:29
  Speaker 1: future wise?
• 39:32
  Speaker 2: Who springs or.
• 39:34
  Speaker 1: Everything?
• 39:39
  Speaker 2: Hush bruings wise? I just yeah, I just want him to.
• 39:46
  Speaker 3: Well, that's that's a that's it's a long It's a
• 39:49
  Speaker 3: long journey, isn't it. So I just want things to
• 39:51
  Speaker 3: keep going as they are and you know, hopefully we'll
• 39:55
  Speaker 3: get a really good end result. But for him, just
• 40:01
  Speaker 3: in general, honestly.
• 40:02
  Speaker 2: I just want him to be happy. I just want
• 40:05
  Speaker 2: him to be happy.
• 40:07
  Speaker 3: And whether you know, if he I remember saying before,
• 40:12
  Speaker 3: you know if I What bugs me in life as
• 40:17
  Speaker 3: people think, you know a good life, And that's where
• 40:19
  Speaker 3: I've changed is do you think a good life is
• 40:21
  Speaker 3: by what you can achieve and what you can become and.
• 40:26
  Speaker 2: And all this and what house you've got, what car
• 40:29
  Speaker 2: you drive?
• 40:30
  Speaker 3: But all I ever want for Parker is to be
• 40:33
  Speaker 3: happy and to feel loved and yeah.
• 40:38
  Speaker 1: You know, I think that's fantastic. Yeah, that's fantastic. And
• 40:43
  Speaker 1: see a modeling career.
• 40:44
  Speaker 3: Then I do think to myself when I do all this,
• 40:49
  Speaker 3: I think, you know, I think to myself, you know
• 40:52
  Speaker 3: it's his future. And do you know what if when
• 40:55
  Speaker 3: he's older and he you know, loves doing it. If
• 40:59
  Speaker 3: you have you seen ever seen George Webster.
• 41:01
  Speaker 2: On CBBS, No, no, I haven't.
• 41:04
  Speaker 3: So he is a TV presenter with down syndrome on CBBS,
• 41:10
  Speaker 3: and I'm thinking, well, George, you might have to watch
• 41:16
  Speaker 3: watch your job.
• 41:17
  Speaker 1: Because his days might be numbered on the BBC.
• 41:24
  Speaker 3: Yeah, but no, I would love to see, you know,
• 41:28
  Speaker 3: and as he as he gets older, you know, for
• 41:31
  Speaker 3: him to take over his Instagram account and you know
• 41:35
  Speaker 3: he can you know, take it over and share what
• 41:39
  Speaker 3: he wants to share and raise awareness because the amount
• 41:44
  Speaker 3: of people that we reach and change people's perceptions the better,
• 41:49
  Speaker 3: because then things will be better for Parker in the future.
• 41:53
  Speaker 1: Absolutely totally agree, could not agree more. So, thank you,
• 41:58
  Speaker 1: Thank you so much for doing this. And just finally,
• 42:00
  Speaker 1: I know we've talked a little bit about Instagram and TikTok,
• 42:04
  Speaker 1: but where can people find you?
• 42:07
  Speaker 3: So he's Parker is on Instagram's Parker's Journey, await and
• 42:14
  Speaker 3: Facebook and he's also on TikTok as Parker by T
• 42:19
  Speaker 3: twenty one.
• 42:20
  Speaker 1: Fantastic. Well to you, to Parker and the rest of
• 42:24
  Speaker 1: your family. I wish you all the best for the
• 42:28
  Speaker 1: future and whatever is to come.
• 42:30
  Speaker 2: Thank you so much.
• 42:34
  Speaker 1: Thank you for listening to the podcast. Find us on Instagram,
• 42:38
  Speaker 1: Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes on
• 42:43
  Speaker 1: Spotify by searching Tom's Hirshbrung's Podcast.