Latest / Tom's Hirschsprung's Podcast / Episode 84 - With Gemma Pope and Carl Ray

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Episode 84 - With Gemma Pope and Carl Ray · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
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  Speaker 1: Each episode, we will explore real stories and honest conversations
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  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in.
• 0:46
  Speaker 2: Hello and welcome to episode eighty four of Tom's Hirshbrungs Podcast.
• 0:54
  Speaker 2: Hello and welcome to episode eighty four of Tom's Hirshbrungs Podcast.
• 1:00
  Speaker 2: And delighted to be joined by two people with Hirshbrungs
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  Speaker 2: this morning, Gemma and Carl. Jemal and Carl, welcome to
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  Speaker 2: the podcast.
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  Speaker 3: Thank you.
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  Speaker 2: Now you are father daughter, so obviously Hirshbrungs has been
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  Speaker 2: passed as well, and Jemma your daughter, and Carl your
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  Speaker 2: granddaughter has hirshbrungs as well, and we're going to talk
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  Speaker 2: about I mean, not just the fact that it has
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  Speaker 2: passed through or Hirshbrungs has passed through three generations, but
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  Speaker 2: you've also got a very rare genetic form.
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  Speaker 1: I guess I know.
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  Speaker 2: We'll talk about it a little bit later of hirshbruns
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  Speaker 2: that's been passed through, which I'm fascinated to find out.
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  Speaker 2: So I guess we'll kind of start as we always do,
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  Speaker 2: and kind of start start from the beginning, if you will.
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  Speaker 4: Yeah, right there, Well, I'm down on Carl. I was
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  Speaker 4: born OT sixty of g I've hirshbrungs.
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  Speaker 2: Certain of all these.
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  Speaker 4: Both my parents have passed away though, But I believe
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  Speaker 4: it was abose three and a half weeks.
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  Speaker 2: I was dark, loosed.
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  Speaker 3: Times dark?
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  Speaker 4: Was it?
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  Speaker 3: Back then? It wasn't heard of.
• 2:16
  Speaker 2: A lot, wasn't there.
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  Speaker 3: They weren't what it was.
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  Speaker 4: I was in hospital for me three years, Yeah, three
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  Speaker 4: years three and my last operation was three and a
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  Speaker 4: half years. For them days, we wouldn't love to laugh.
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  Speaker 4: They do things to distract me from laughing because and
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  Speaker 4: the operation I had is large, almost stomach's complete, full
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  Speaker 4: of scars, whereas my daughters it's one being a lot
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  Speaker 4: of tiny scar So progression is amazing in the sixty
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  Speaker 4: four years.
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  Speaker 5: And just because I mean Tommy, but jessicause is that one. Yeah,
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  Speaker 5: it's brilliant, Well not the little ones, but the biggest
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  Speaker 5: one is about that big and that's where Stona.
• 2:57
  Speaker 2: Was, so Thursday House, but a lot very well heard
• 3:00
  Speaker 2: of them.
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  Speaker 4: No, not in that So I've bentually came out off
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  Speaker 4: about three three and a half years old, got full tools.
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  Speaker 2: Yeah so yeah, yeah, And.
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  Speaker 4: I said obviously for sixty four years, but I think
• 3:14
  Speaker 4: you learned to live with.
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  Speaker 3: They're going to come in and visit.
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  Speaker 2: I had no visitors the whole.
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  Speaker 4: Time, long days is after up to the window because
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  Speaker 4: I was to cry when I saw them and they
• 3:26
  Speaker 4: didn't want me to cry.
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  Speaker 2: Why are we.
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  Speaker 3: Were long?
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  Speaker 5: Long segment be third to remove it was large ands miinster.
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  Speaker 2: Yeah, I've had a three problemable years.
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  Speaker 4: I in nineteen sixty six, and I believe in one
• 3:42
  Speaker 4: can actually still remember it. I had a little cockles.
• 3:46
  Speaker 4: I had these cockles and probably in the hospital for
• 3:49
  Speaker 4: six days. Must pump everything and basically what it was
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  Speaker 4: most something wouldn't allowed the cottles to beaten up to
• 3:59
  Speaker 4: favor disarmage, stomach pumping and all sorts. Still remember that
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  Speaker 4: quite clearly, even though six So there's no more cobbles,
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  Speaker 4: they're no more console. I haven't had since I maybe
• 4:13
  Speaker 4: one maybe two push the trump I like them to shavers.
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  Speaker 2: Well yeah, every so often.
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  Speaker 5: Names that I love to eat, I can't eat because.
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  Speaker 2: So annoying as locals are.
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  Speaker 4: You you learn what you can get away with, what
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  Speaker 4: you can eat, what you can't eat, and.
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  Speaker 3: Then you think, oh, I will have that peanut because Smith,
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  Speaker 3: and I'll just deal with it later.
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  Speaker 4: Peanuts are absolute at all though, four years ago, four
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  Speaker 4: years ago where I thought chist, yeah, the just it
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  Speaker 4: that frightened me really bad. I was in so much pain,
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  Speaker 4: and ever since then my wife constantly having to go
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  Speaker 4: out of me said promptly, but yeah, all my school
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  Speaker 4: life was was hard. I had a hard school life
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  Speaker 4: because no one understood, and you got you get bad wind,
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  Speaker 4: and you get town goods to the tourlet then you
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  Speaker 4: have to go to the toilet, and then you have
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  Speaker 4: to call to the toilet and this nightmare. But living
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  Speaker 4: through it, looking back on it now, I think we
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  Speaker 4: caught a cook boy. Well lots of port my family.
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  Speaker 4: I could then pass all everybody Gemma, but she suffered different,
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  Speaker 4: a lot different than I.
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  Speaker 5: Do you know telling my earlier part of the story
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  Speaker 5: because I can't member.
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  Speaker 4: Yeah, that's the sort of I've dealt with it in
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  Speaker 4: my way. You have to allow the floor in your
• 5:40
  Speaker 4: stomach and my wife rather than back no and again
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  Speaker 4: not very often these days just seem to get better.
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  Speaker 2: And the fractions the wind are terrible, gout fun. Though
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  Speaker 2: we have a lot of laugh at it.
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  Speaker 3: One of them can't help us, some hashbrums.
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  Speaker 2: So exactly we have an excuse for light. It's great, brilliant.
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  Speaker 2: I use it. I need to believe.
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  Speaker 4: But he is all my I worked in a factory
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  Speaker 4: most of my life, but I always want to be
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  Speaker 4: a lawry driver. Were fifty five and this is part
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  Speaker 4: of hers brings. I've started driving Lorry to all the
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  Speaker 4: tests and that and late develpa. But I found I
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  Speaker 4: was not in the clust after toilet when I drive lorries,
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  Speaker 4: could not, so that did laugh very long. Then I
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  Speaker 4: start driving locally, could get to a toilet crick enough,
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  Speaker 4: so I had to give out.
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  Speaker 2: So then I retired early.
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  Speaker 3: Well you've came to binman, didn't you?
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  Speaker 4: Times glad beIN Lorri's and the amount of times have
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  Speaker 4: got caught all the pain the problem with me, I'm
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  Speaker 4: talking my case. He said, well, don't go to the
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  Speaker 4: toilet when the urge is there. The longer goes on
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  Speaker 4: the worth the art.
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  Speaker 2: Effects are and the longer I could have after effects
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  Speaker 2: two three days.
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  Speaker 4: So if I go to the toilet or if I
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  Speaker 4: caads would immediately their master effects are completely reduced.
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  Speaker 2: I get over it and chur three hours. So that's
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  Speaker 2: that's how I how I do it.
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  Speaker 5: Also, after my nanny died, which was then it's seventeen
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  Speaker 5: years ago, my dad got through struck.
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  Speaker 3: We thought it was through really really like.
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  Speaker 2: Bronick hiccups and hiccup really bad.
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  Speaker 5: And it was twenty four hours a day and it
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  Speaker 5: was it was very dramatic or hots and would keep
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  Speaker 5: them up in the night, made sick, stop and breathing
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  Speaker 5: because it was so dramatic. I couldn't eat anything, if
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  Speaker 5: anything it would come up again. Went to hospital and
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  Speaker 5: it was and you know, still did It's not as
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  Speaker 5: bad as school.
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  Speaker 4: Twice to check items in any thought some kind of
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  Speaker 4: canter or something to do.
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  Speaker 2: You know, we didn't know what it was. Everything was clear.
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  Speaker 4: Then it'll go off and then three or four weeks later,
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  Speaker 4: come back for chair three weeks and when I say
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  Speaker 4: come back, I mean the hiccups were so violent chest felt.
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  Speaker 2: Really really bad.
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  Speaker 5: However, we've no recently because I we will go into
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  Speaker 5: this more later on when we're speaking a bit more
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  Speaker 5: about Jessica. But we had genetic testing done and then
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  Speaker 5: I think it could be due to hashbuns flick to hash.
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  Speaker 2: Buns, because it's all part of the nervous system. It's interesting,
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  Speaker 2: that's really interesting.
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  Speaker 5: My dad's gonna because my daughter was genetically tested. But
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  Speaker 5: then I want dad to have it done, which are
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  Speaker 5: going to do. Yeah, and they're going to see if
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  Speaker 5: it's linked.
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  Speaker 4: The jumped through hoops at the moment, and that excited
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  Speaker 4: about the geneticis because of this really how we're rare
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  Speaker 4: we are? And he said and I said a bit
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  Speaker 4: of haircuts and Jem said the issue, she's how and
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  Speaker 4: he would oh and he wrote things down and he said,
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  Speaker 4: would you mind the genet test and definitely and we said,
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  Speaker 4: you know, for the hiccups, yes, possible, any sort of Yeah,
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  Speaker 4: I can investigate that because hiccups, he said, is part
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  Speaker 4: of the gene that with the vagus nerve, which is
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  Speaker 4: part of the gene is defect defective you say, and
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  Speaker 4: he said, I could it. So that'll mean some some
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  Speaker 4: of your listeners to think about if they get hiccups.
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  Speaker 4: That partly proud but I know how since my mom died.
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  Speaker 4: I just on my last boat of hiccups about two
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  Speaker 4: weeks ago. But that's not worn now as it was.
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  Speaker 5: It was stress related because it would always happen around
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  Speaker 5: the time when you were stressed out, and I was
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  Speaker 5: stressed out.
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  Speaker 3: So that's which is what made us sound.
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  Speaker 5: The doctors think that. When we brought up to the geneticist,
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  Speaker 5: he was like, no, it could be linked. That's a
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  Speaker 5: strong possibility.
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  Speaker 2: I just wanted to sort of keep old of you know.
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  Speaker 2: He said he's working Vesta for.
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  Speaker 4: What it did.
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  Speaker 2: Yeah, so it's really interesting.
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  Speaker 4: They won't get it if he said he has part
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  Speaker 4: of the night live with it as part as half
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  Speaker 4: the cure.
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  Speaker 2: You know what. Absolutely, because we were well, we just
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  Speaker 2: couldn't go. I've still dre anything for it in my life.
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  Speaker 2: Couldn't work. Well. I worked through it, but.
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  Speaker 4: We've been sick all the time, the hiccups for kicking
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  Speaker 4: your headaches and also all Doug hiccups.
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  Speaker 2: As well as and so. But the problem he really
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  Speaker 2: doesn't affect me. Yeah, it's the difference.
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  Speaker 5: You really do deal with it, don't you. And I'm like, yeah,
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  Speaker 5: I don't know any different.
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  Speaker 3: So to me, this is normality. I don't know what's
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  Speaker 3: knocked out. We always have a jabn't talk about where
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  Speaker 3: in a gang?
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  Speaker 2: See where you her phones go? Na a daughter and
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  Speaker 2: my granddaughter. So that's the family can go away when
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  Speaker 2: the group.
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  Speaker 3: You from sitting there. She's like charming. I've been fronted.
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  Speaker 5: So I've been married to one and a mother to
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  Speaker 5: one and a grandmother to one.
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  Speaker 2: You you know, we did just get on with it,
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  Speaker 2: don't we. We do just kind of, I guess, because
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  Speaker 2: what choice is there? You know, what what else do
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  Speaker 2: you do?
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  Speaker 4: But is that.
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  Speaker 2: We do just kind of. But if we were to
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  Speaker 2: write down, you know, in a month or whatever or
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  Speaker 2: a year, what we what we deal with, you know,
• 11:01
  Speaker 2: the pains or the stomach cramps or you know, all
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  Speaker 2: of this that and the other, to write them down
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  Speaker 2: and show to a doctor, they've probably put you in
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  Speaker 2: hospital for a week, does it? They go, what that
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  Speaker 2: is this?
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  Speaker 3: But it's like, well, we just just get on with it.
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  Speaker 4: Passionate episode What the passion about whole people's we are? Yeah, Gemma,
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  Speaker 4: we're very passionate. The other Hirshbowls community to understand what
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  Speaker 4: we go through as them was.
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  Speaker 5: There because once a year my doctor's surgery. Because I've
• 11:33
  Speaker 5: had three cesareans with my girls, they know I've had hirshbums.
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  Speaker 5: They don't bring that up, and they always ring me
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  Speaker 5: up and go, oh, you've had three three cesareans. Is
• 11:42
  Speaker 5: there any chance that you could come in and just
• 11:44
  Speaker 5: talk to our students please? So I go in to
• 11:47
  Speaker 5: talk about the Saians mentionine that I had hirshbums and
• 11:50
  Speaker 5: that my daughter always had hirshbrums, and that's it.
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  Speaker 3: The Syrians can do one. They want to know all about.
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  Speaker 3: They don't want to know about anything else because they, oh,
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  Speaker 3: we know he got told at university we never ever
• 12:02
  Speaker 3: met anyone with aish springs disease, is what one of
• 12:04
  Speaker 3: them told me.
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  Speaker 2: Once.
• 12:05
  Speaker 3: I was like, well, now you've met someone who's got
• 12:06
  Speaker 3: three people in the family. So and then what they're all,
• 12:09
  Speaker 3: they're not interested in the serias.
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  Speaker 5: I just want to know about that. And then I
• 12:13
  Speaker 5: ended up and just sit there for an extra hour
• 12:15
  Speaker 5: talk to them about that. So it is people you
• 12:18
  Speaker 5: know that students, and that really fine? Is So I
• 12:21
  Speaker 5: do that once a year and they they're they're fascinating
• 12:24
  Speaker 5: and they're all writing notes and getting all excited because
• 12:26
  Speaker 5: they've met someone with that.
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  Speaker 3: Brilliant that's fantastic.
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  Speaker 2: But again, we are we are so rare, aren't we
• 12:33
  Speaker 2: in the fact that I mean, that's that's part of
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  Speaker 2: the reason why I started this, because I didn't know
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  Speaker 2: anyone with it, so I thought, well, I wonder if
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  Speaker 2: I can find people. I wondering, and I've managed to
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  Speaker 2: find about seventy odds. But eventually if I can find
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  Speaker 2: you know people. But it is a little bit needle
• 12:49
  Speaker 2: in a haystack stuff, isn't it? Because we're not unique?
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  Speaker 5: Yes, playing with work, we all go back uselesss a
• 12:56
  Speaker 5: fan we're unique.
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  Speaker 2: So yes, And on that unique point, I know there
• 13:02
  Speaker 2: was something he wanted to talk about. And obviously Hirshprungs
• 13:06
  Speaker 2: makes you unique in terms of the one in five thousand.
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  Speaker 2: But there's correct me if I'm wrong. But there's another
• 13:17
  Speaker 2: genetic reason as to why you're unique. Did you want
• 13:20
  Speaker 2: to talk about that as well?
• 13:24
  Speaker 5: Lex isn't it? But but my story in a minute,
• 13:27
  Speaker 5: and my daughter story. But what they asked if they
• 13:31
  Speaker 5: could do the genetic testing on my daughter to find
• 13:34
  Speaker 5: out why we haven't because she's the third one in
• 13:37
  Speaker 5: a line of us who's got it, obviously, and they
• 13:39
  Speaker 5: wanted to find out what the reason was because we
• 13:41
  Speaker 5: have no other medical conditions, and usually it's linked to boys,
• 13:46
  Speaker 5: and mainly boys and mainly children with Down syndrome. Is
• 13:50
  Speaker 5: what we've always been told, and that dad was told,
• 13:53
  Speaker 5: or my grandparents were told that he would never he'd
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  Speaker 5: never pass it on. That's what they in the sixty
• 14:00
  Speaker 5: and seventies, that's what they were told, they will never
• 14:02
  Speaker 5: pass on. So when I was born in eighty three
• 14:05
  Speaker 5: and then I had it, they were my nanny was
• 14:08
  Speaker 5: LEAs trusted. Would you mind if we did the genetic test?
• 14:14
  Speaker 5: And I'm your daughter, general, I'll ask them. She was
• 14:17
  Speaker 5: about which is fort thirteen, so she must have been
• 14:20
  Speaker 5: about eleven when they did that, and I said to
• 14:25
  Speaker 5: gen mind, She no, I don't mind, because she's as
• 14:27
  Speaker 5: interested in help people as what we are. So so
• 14:30
  Speaker 5: she did the blood test and everything. I took a
• 14:32
  Speaker 5: while because they've been doing it at the university at Cambridge.
• 14:37
  Speaker 5: So they came and did it, took all the tests
• 14:39
  Speaker 5: and stuff like that, and then I got a call
• 14:42
  Speaker 5: that must have been about a year into it. It
• 14:44
  Speaker 5: took a long time, and they said, could you come
• 14:47
  Speaker 5: and see us because we're from Norwich, so the Norwege
• 14:50
  Speaker 5: and Northern Hospital. So yeah, that's fine. So I took
• 14:52
  Speaker 5: my daughter up there. Bring your daughter with you so
• 14:54
  Speaker 5: we can talk to her as well. So I took
• 14:56
  Speaker 5: her with me and they said, so we think we've
• 14:59
  Speaker 5: found the g that you have. We're not one hundred
• 15:04
  Speaker 5: percent sure if that is the part. We need to
• 15:05
  Speaker 5: do more testing and start talking to me about how
• 15:09
  Speaker 5: it affects families. And he said, but we're not one
• 15:12
  Speaker 5: hundred percent sure because we're always testing it all the time.
• 15:16
  Speaker 5: And I can't remember a huge amount of that conversation
• 15:20
  Speaker 5: if one was because I went straight over.
• 15:21
  Speaker 3: My head, but it was very much you know, we're
• 15:26
  Speaker 3: still looking and do you mind if we keep looking?
• 15:28
  Speaker 3: And I had to sign permissions them to keep testing
• 15:31
  Speaker 3: stuff and look at different things. So anyway, about what
• 15:35
  Speaker 3: was it about a month or so ago? I got
• 15:37
  Speaker 3: a letter, didn't I to say we find it? Could
• 15:41
  Speaker 3: you come in?
• 15:42
  Speaker 5: So I was like, yeah, of course I will in it.
• 15:44
  Speaker 5: And they're not aheading the letter. They sent a letter
• 15:47
  Speaker 5: within a week and they wanted me in a week later.
• 15:50
  Speaker 5: So I said, do you mind if my dad comes
• 15:53
  Speaker 5: because he'll find it really interesting. Obviously he's affected, right,
• 15:55
  Speaker 5: and my mom, Hey, so because mom is a clever
• 15:59
  Speaker 5: sausage and she'll be on some better than we could.
• 16:01
  Speaker 4: So.
• 16:03
  Speaker 5: She can belong to and also she's been massive part
• 16:06
  Speaker 5: of it too, so being married to someone and mother
• 16:08
  Speaker 5: of some of the grandmar So mom came along to
• 16:10
  Speaker 5: and they said, bring your daughter. So we all went
• 16:13
  Speaker 5: and basically they found a gene called fox two B,
• 16:17
  Speaker 5: which they said, ours is a lot lot shorter than
• 16:21
  Speaker 5: a normal person. And let's not say normal, but you
• 16:24
  Speaker 5: know what I mean. He said, However, yours is incredibly
• 16:28
  Speaker 5: rare because there's only one other family with three generations
• 16:32
  Speaker 5: in the world that has the same gene off at
• 16:36
  Speaker 5: the same time, who don't have any other conditions that
• 16:39
  Speaker 5: come with that gene the deformity. For so, the g
• 16:45
  Speaker 5: that gene is formed before your body is formed. It's
• 16:50
  Speaker 5: in it's literally in the embryo, and that is the
• 16:55
  Speaker 5: gene that starts on he said. It literally is when
• 16:57
  Speaker 5: you look at an embryo just as it turned into
• 17:00
  Speaker 5: a human, it will have a line like almost like
• 17:03
  Speaker 5: the spine, and it sits on that and then it
• 17:06
  Speaker 5: literally goes You said, say it's on top of your head,
• 17:09
  Speaker 5: he said, it will come down, and he said, and
• 17:11
  Speaker 5: it forms your nervous system, it forms your eyes, nose
• 17:16
  Speaker 5: is yeah, yeah, always once he said, what else? It
• 17:21
  Speaker 5: hot me a lot, he said, and moved down your body.
• 17:25
  Speaker 5: At a certain point, yours has just stopped working. And
• 17:29
  Speaker 5: that is where Hirshbun's kicked in.
• 17:32
  Speaker 3: Because when you form a gene, you.
• 17:36
  Speaker 6: Letters and numbers. Yeah, you have multiple letters and numbers.
• 17:44
  Speaker 6: So they got to fox, which is p H o
• 17:47
  Speaker 6: X two B.
• 17:49
  Speaker 3: Yeah. But then you can have f g H three
• 17:53
  Speaker 3: seven Yeah, and your genes can keep going but a
• 17:57
  Speaker 3: very short We're very sure. And then that's where why
• 18:02
  Speaker 3: it didn't. That didn't.
• 18:06
  Speaker 2: Yeah, that's the rare part, and that's why the gene, that's.
• 18:10
  Speaker 3: Why the nerves are not in in the bowl. And
• 18:13
  Speaker 3: that's what that's Yeah, I think.
• 18:16
  Speaker 2: Yeah, yeah, that makes yeah, that makes sense me that
• 18:21
  Speaker 2: that's fascinating. I love all this genetic stuff.
• 18:24
  Speaker 3: I really did it as clever.
• 18:26
  Speaker 5: But he said that that gene also there's two other
• 18:31
  Speaker 5: conditions that come with that gene. If it's deformed. I
• 18:35
  Speaker 5: don't like using that word, but that's the only word
• 18:37
  Speaker 5: I can think of at the moment, and that is
• 18:40
  Speaker 5: neuroblastoma and and not I can't remember what the other
• 18:45
  Speaker 5: one is, but it's just a breathing problem basically, and
• 18:49
  Speaker 5: it's to do with them, and people.
• 18:51
  Speaker 3: Have died, children have died from it.
• 18:53
  Speaker 5: It is from birth. These two conditions are from birth.
• 18:56
  Speaker 3: So I freaked out. I was like, I just had
• 18:59
  Speaker 3: neuroblast and what's a brain tree? But it doesn't to
• 19:03
  Speaker 3: get one later on in life.
• 19:03
  Speaker 5: But he's none up on birth, so he said, and
• 19:08
  Speaker 5: what it is people with that deformity and with the
• 19:11
  Speaker 5: foot with that gene, with that deformity would have one
• 19:15
  Speaker 5: of those two, either both or one of them, and
• 19:18
  Speaker 5: then get hirsh brungs as well on top of that.
• 19:20
  Speaker 5: But we haven't got those other two. We've just got
• 19:22
  Speaker 5: the Hirsh frouns. So there's only two other two families.
• 19:26
  Speaker 2: In the linked to this gene rather than other things
• 19:30
  Speaker 2: branching off.
• 19:31
  Speaker 4: But the the other thing he did say, you're definitely
• 19:34
  Speaker 4: got to get this breeding deformedy.
• 19:36
  Speaker 2: You're definitely gonna get this brain thing.
• 19:40
  Speaker 3: Either. If you were going to get the brain thing
• 19:43
  Speaker 3: that develops. Tommy's seven and something said that, Yeah, quite
• 19:49
  Speaker 3: a lot of children have brains around that eight. People
• 19:53
  Speaker 3: know that if you get to seven and you haven't
• 19:55
  Speaker 3: got brain afore going to get you're not going to
• 19:58
  Speaker 3: get it.
• 19:58
  Speaker 5: Yeah, it's in in, it's in childhood. But we're the
• 20:03
  Speaker 5: only we're the only fact. There's only one other family
• 20:06
  Speaker 5: that I said, who got the same So that's what
• 20:09
  Speaker 5: we keep saying.
• 20:10
  Speaker 2: We unique. Yeah, absolutely, and I guess with the other
• 20:15
  Speaker 2: family as well, and there's hippo laws and all of
• 20:17
  Speaker 2: that stuff. But they didn't tell you roughly where what
• 20:20
  Speaker 2: country this family is in or whatever where they are
• 20:24
  Speaker 2: Asian think.
• 20:29
  Speaker 3: That was something different.
• 20:30
  Speaker 5: Yeah, that what that family he tried to leave to
• 20:33
  Speaker 5: see that they had other issues, had like eye problems
• 20:37
  Speaker 5: with their eyes, so that was something different.
• 20:39
  Speaker 3: He thought it was them, but it wasn't. And when
• 20:41
  Speaker 3: he said, actually they might be in America, but he's
• 20:42
  Speaker 3: not one hundred percent of.
• 20:45
  Speaker 4: We can't be precise, but that it's of you very
• 20:48
  Speaker 4: very can very would information because rightly so we totally
• 20:55
  Speaker 4: agree with that as well.
• 20:56
  Speaker 2: True. But yeah, yeah, that was that was really in
• 20:59
  Speaker 2: agressive a little bit.
• 21:00
  Speaker 4: I've got a big a headache. Were genetics. I got
• 21:03
  Speaker 4: a little bit of a headache. I thought, what on earth,
• 21:06
  Speaker 4: did he say. But we went home and down to
• 21:08
  Speaker 4: talk about it and sort of understands the more though,
• 21:11
  Speaker 4: don't we But they said, let us know. Yeah, Phil
• 21:13
  Speaker 4: forged In have all genetics done and always e crotest done.
• 21:17
  Speaker 5: We also found out because obviously I'm the elders of
• 21:19
  Speaker 5: six and I'm the only one who's got it. My
• 21:22
  Speaker 5: siblings never got it. And we also find out that
• 21:26
  Speaker 5: there is a They would like to actually test my
• 21:30
  Speaker 5: siblings as well, because they've.
• 21:33
  Speaker 3: Three of my three of my sib three.
• 21:35
  Speaker 5: Remember so many of us, three of my siblings have
• 21:37
  Speaker 5: had children and none of them have got it either.
• 21:40
  Speaker 5: So it said the chances of them my siblings have
• 21:42
  Speaker 5: and it's slim, but there's still a chance. So they'd
• 21:45
  Speaker 5: like to know if they've got that gene because if
• 21:47
  Speaker 5: they've got savings up on my brother who has two children,
• 21:50
  Speaker 5: they're all okay and haven't got harshbruns. However, they still
• 21:53
  Speaker 5: could carry the gene, which means they still could carry
• 21:55
  Speaker 5: on later on. So he said, what he'd like to
• 21:58
  Speaker 5: know is savings up my brother. He'd like to know
• 22:01
  Speaker 5: if he's got it, because if he hasn't got it,
• 22:03
  Speaker 5: then he knows the kids definitely haven't got it, which
• 22:05
  Speaker 5: means that it dies, it's not gonna pass on. So
• 22:09
  Speaker 5: they want they want to test their testing the test.
• 22:12
  Speaker 5: Then they're gonna when they will find out what they
• 22:14
  Speaker 5: can find it from us, then they're then they would
• 22:17
  Speaker 5: like to then test my siblings, so then they're defunct.
• 22:22
  Speaker 5: Whoever of my siblings has got the gene. They'd like
• 22:25
  Speaker 5: to then test their children, but we don't know if
• 22:27
  Speaker 5: it will go that far.
• 22:29
  Speaker 3: Like if one of the granddors, say, has got the
• 22:32
  Speaker 3: g and they find that one of the grand daughters
• 22:36
  Speaker 3: has got gene, then they can offer them on down
• 22:42
  Speaker 3: the line, and so they can eradicate.
• 22:45
  Speaker 5: It at at embryo stage from you and get rid
• 22:49
  Speaker 5: of the they can like clean the embryo. But I
• 22:55
  Speaker 5: they've offered that to Jessica, my daughter, as well, and
• 22:57
  Speaker 5: they've said to her that if you if you want
• 23:00
  Speaker 5: to have IVF. She doesn't want to. She said, no,
• 23:04
  Speaker 5: I'm not doing that because that could take chances away
• 23:06
  Speaker 5: from me having children at all.
• 23:08
  Speaker 3: If they're gonna do that every time.
• 23:09
  Speaker 5: I have a baby, I may never have one because
• 23:11
  Speaker 5: I have to.
• 23:12
  Speaker 3: Always work, you know.
• 23:13
  Speaker 5: She sa was thirteen, but even she could think of
• 23:14
  Speaker 5: that one. We live with it, and that's as awful
• 23:18
  Speaker 5: as is.
• 23:19
  Speaker 3: I had two children before I had Jessica, and they
• 23:22
  Speaker 3: ain't got it. So who's to say that she's gonna
• 23:24
  Speaker 3: pass on?
• 23:25
  Speaker 2: Yeah?
• 23:25
  Speaker 4: You know you first, Yeah, and I really stop five
• 23:29
  Speaker 4: five rall had three boys and three girls.
• 23:32
  Speaker 5: It was a personal choice. He's a personal choice, you know.
• 23:36
  Speaker 4: I was.
• 23:37
  Speaker 3: I had six children. You had my first child, had it, Yeah,
• 23:41
  Speaker 3: And then every time I then went on to have
• 23:44
  Speaker 3: another child, I was petrified. I mean I was absolutely
• 23:47
  Speaker 3: petrified that I then have another child with her because
• 23:52
  Speaker 3: at this stage, I didn't know how Gemma would. I
• 23:56
  Speaker 3: always thought general could wouldn't be able to have children,
• 23:58
  Speaker 3: and I would worry. I was worried about so much
• 24:01
  Speaker 3: about her. And then I kept having the children, and
• 24:04
  Speaker 3: I kept thinking, Oh, if I have another one, I
• 24:07
  Speaker 3: don't think I could cope. So I would have personally
• 24:10
  Speaker 3: have liked to have had the chance of having the
• 24:14
  Speaker 3: embryos cleaned. You know for me, that that would be
• 24:18
  Speaker 3: that would have been a yes for me. I think
• 24:20
  Speaker 3: that's a personal choice. Yeah, yeah, persons, It is very interesting.
• 24:28
  Speaker 3: It's really really interesting, especially as you say that you're
• 24:31
  Speaker 3: the eldest of six, and your other five siblings don't
• 24:34
  Speaker 3: have and hirshbums. And then you have Lodge and then
• 24:39
  Speaker 3: you have three daughters and one one has hirshbrungs and
• 24:43
  Speaker 3: the other two don't have hushbrungs with so I kept
• 24:50
  Speaker 3: having them. And then she was born and I was like, oh,
• 24:52
  Speaker 3: there we go. Yeah, thinking like that one that easily
• 24:55
  Speaker 3: did I And she's like, well, she's.
• 24:59
  Speaker 2: All of it.
• 25:00
  Speaker 5: We've all had about two thirds remove of our love
• 25:02
  Speaker 5: contestants removed.
• 25:05
  Speaker 2: So yeah.
• 25:06
  Speaker 3: So then obviously I was born in eighty three.
• 25:10
  Speaker 2: You can tell because I was number one thirty three.
• 25:15
  Speaker 4: Because of the history of hirsh bowls, Gemma didn't pass
• 25:18
  Speaker 4: from a chilium straight away. Saw my wife then random
• 25:23
  Speaker 4: Rabe's Hospital said look, you know this earth prompt in
• 25:25
  Speaker 4: our family.
• 25:27
  Speaker 2: Couldn't be that. Then I think they ignored that for
• 25:29
  Speaker 2: a little or didn't. They didn't. They dismissed it for
• 25:31
  Speaker 2: a while.
• 25:32
  Speaker 3: Three they didn't.
• 25:34
  Speaker 2: They made me tell you what to do so that.
• 25:38
  Speaker 3: Yeah, you self diagnosed. You don't mean you can today,
• 25:41
  Speaker 3: but back.
• 25:42
  Speaker 4: Then we didn't. They they dismissed it in in a
• 25:46
  Speaker 4: not say they justly dismissed it. You know, we get
• 25:50
  Speaker 4: LUCKI you know, my wife's hope assistant and kept saying, look, well,
• 25:53
  Speaker 4: you know it's something wrong here. We've got hers policies.
• 25:57
  Speaker 4: Can you please look at it. Five days later we
• 26:01
  Speaker 4: went into the hospital and all of a sudden that
• 26:02
  Speaker 4: was all Hulbert brookloose. They had an ambulance at the door.
• 26:07
  Speaker 4: Two Amlas drivers came in. We're taking the tray all
• 26:09
  Speaker 4: the three and I was like, oh, I have transferred
• 26:12
  Speaker 4: packed or anything. So my wife went down in the admirans.
• 26:16
  Speaker 4: I followed in the car, actually terrified.
• 26:18
  Speaker 3: He said, did the amast? I said from the blue
• 26:20
  Speaker 3: wheel was going on? Are you not following me?
• 26:23
  Speaker 4: I said, you've got nilk chance, mate, I'll be you
• 26:25
  Speaker 4: would lose me. Can you imagine sad to her father
• 26:27
  Speaker 4: that happened? Anyway, we got to bed or the three
• 26:30
  Speaker 4: and a tiny little bundle she was, and put her
• 26:32
  Speaker 4: on this massive thing.
• 26:35
  Speaker 2: Neptin old surgery recruit. What's going on?
• 26:38
  Speaker 4: I don't have a crew, but they were absolutely amazing.
• 26:41
  Speaker 4: A great old fiend explained all to us, and we
• 26:45
  Speaker 4: went for all that and she went to health. She
• 26:48
  Speaker 4: two weeks in the hospital.
• 26:49
  Speaker 2: You brought on. Then she went six months later.
• 26:54
  Speaker 5: Didn't because the first one to have it into operation.
• 26:57
  Speaker 4: Yeah, well, what they've done, they've done the first one.
• 26:59
  Speaker 4: They've done the ball through in the following January, and
• 27:02
  Speaker 4: then mister Brereton, her surgeons, called my wife, Matt and
• 27:06
  Speaker 4: I and said, and we got Troy to do it
• 27:10
  Speaker 4: in two operations, pulled through septual. We've got to do
• 27:15
  Speaker 4: before we've got Tria. We said, right, okay do your
• 27:19
  Speaker 4: pa said well, yeah, obviously, so anyhow, that was successful.
• 27:23
  Speaker 2: They've done it.
• 27:24
  Speaker 4: And he called it in the office, mister Brereleton, and
• 27:26
  Speaker 4: he said it's actually gone into the medical journal, the
• 27:30
  Speaker 4: first one we've ever done in two that's what he
• 27:34
  Speaker 4: told us.
• 27:34
  Speaker 2: It didn't.
• 27:35
  Speaker 3: Well, I'm not unique twice so.
• 27:38
  Speaker 4: We we'd understand word were you signed to where we'd
• 27:41
  Speaker 4: have a clue what was going on.
• 27:43
  Speaker 3: You had a cost me, didn't yet cost me for
• 27:46
  Speaker 3: how many months must have have had one?
• 27:47
  Speaker 2: Then eight months? Six months?
• 27:50
  Speaker 3: Yes?
• 27:50
  Speaker 4: Six ye, because then she she had the war shouts.
• 27:54
  Speaker 4: But she was amazing as a little baby.
• 27:57
  Speaker 2: Oh she's still good, would she?
• 27:59
  Speaker 4: She was amazing that we went to had all that
• 28:01
  Speaker 4: done and that was brilliant. The problems Gemo to tell
• 28:05
  Speaker 4: her this bit because they cheat Caroll after this. The
• 28:07
  Speaker 4: biggest problem she used there is pro lats. Yeah, she's
• 28:10
  Speaker 4: get a lot of pro lats, half a lot, doesn't
• 28:12
  Speaker 4: you The fact she dealt with it herself as as
• 28:15
  Speaker 4: a child, she's my wife done it at first, and
• 28:21
  Speaker 4: she she wanted herself and she was amazed she done it.
• 28:24
  Speaker 3: You know, she lost myself a lot, but that was
• 28:29
  Speaker 3: that's just something that comes with her.
• 28:30
  Speaker 2: Something the rest of the story. I think she'd tell herself,
• 28:33
  Speaker 2: you remember.
• 28:34
  Speaker 3: That, Yeah, yeah, pretty much. So I don't remember. I
• 28:37
  Speaker 3: can remember the like things.
• 28:38
  Speaker 5: I got to sleep by my grandparents house and I
• 28:41
  Speaker 5: would get up in the night and my mom hady mom,
• 28:43
  Speaker 5: Dad always send me those niggas just in case, and
• 28:46
  Speaker 5: I know that I would get up and I'd loss
• 28:48
  Speaker 5: myself again. So even at the age of six, I've
• 28:51
  Speaker 5: washed you under the sink and hang over the edge
• 28:53
  Speaker 5: of the bar and all that sort of thing. And
• 28:55
  Speaker 5: that's just again, didn't know any difference. So you just
• 28:57
  Speaker 5: get on with it, don't you. School was difficult. I
• 29:01
  Speaker 5: had a really good group of friends around me. One
• 29:04
  Speaker 5: in particular i'm still friends with to this day. Would
• 29:09
  Speaker 5: if I go I really need to go.
• 29:10
  Speaker 3: She grabbed me by had a rugby I'll normally pulled
• 29:13
  Speaker 3: me through crowds, tell people to get out of the way.
• 29:16
  Speaker 5: She would get me to a toilet. And the schools
• 29:19
  Speaker 5: were always fantastic though. It would give me toilet passers
• 29:23
  Speaker 5: and let me go when I need to go. They
• 29:25
  Speaker 5: were always I don't want your schools were like the
• 29:30
  Speaker 5: same school. But one time I went there, it was
• 29:33
  Speaker 5: completely different and you could go. And I think I
• 29:37
  Speaker 5: was left and messing myself once at infant school and
• 29:39
  Speaker 5: Mom absolutely kicked off big time, as you can imagine.
• 29:43
  Speaker 5: But but yeah, that it was just I things that
• 29:49
  Speaker 5: we said a minute. I don't know any different, so
• 29:51
  Speaker 5: I don't know.
• 29:54
  Speaker 3: What was normal for me that was. So I just
• 29:56
  Speaker 3: dealt with it.
• 29:57
  Speaker 5: I never never ready winged. I never had I've done really.
• 30:00
  Speaker 5: I mean, I I now have a stomic pain twenty
• 30:04
  Speaker 5: four to seven. It never goes I've got one right now.
• 30:06
  Speaker 5: It never goes away. It's like a dull ache all
• 30:09
  Speaker 5: the time. But I don't bruinge abad it.
• 30:12
  Speaker 3: I don't go on about it. I get on on
• 30:14
  Speaker 3: my day.
• 30:15
  Speaker 5: I still have had children and lived as normal life
• 30:19
  Speaker 5: as I can. You know, like like my my husband's
• 30:25
  Speaker 5: a bit of a wingebag when it comes to being poorly.
• 30:27
  Speaker 3: But when I you know, I go.
• 30:32
  Speaker 5: So they but but I just don't because I've always
• 30:36
  Speaker 5: lived with it.
• 30:37
  Speaker 3: I don't know any different. So you just get on
• 30:40
  Speaker 3: with it, don't you.
• 30:41
  Speaker 4: You know?
• 30:42
  Speaker 3: I mean, I feel like I need the toilet twenty
• 30:44
  Speaker 3: four to seven as well. That's something that's happened over
• 30:46
  Speaker 3: the last three or four years, which is why I've
• 30:48
  Speaker 3: had to have a chronoscopy last week, and no found
• 30:51
  Speaker 3: I got diverticul lights as well.
• 30:54
  Speaker 5: To have something else, why not teap balves so that
• 31:00
  Speaker 5: as well now. But and they went helpfully because they went, wow,
• 31:04
  Speaker 5: you're just going to have to live with her, is
• 31:06
  Speaker 5: what the man said to me.
• 31:07
  Speaker 3: I was like, what perhaps, so I wasn't. I've just
• 31:13
  Speaker 3: completely been left in the dark. But but yeah, but school,
• 31:16
  Speaker 3: like I said, school was great, had few accents at school,
• 31:19
  Speaker 3: would get a lot of.
• 31:20
  Speaker 5: Tummy pains, blah blah blah. As I got older again,
• 31:25
  Speaker 5: just live with it. Had managed to have three healthy daughters.
• 31:31
  Speaker 5: First one she's actually sitting right there. She's nearly twenty now,
• 31:35
  Speaker 5: but she she had her nearly couldn't have any more
• 31:40
  Speaker 5: children because I had to have She was seven weeks
• 31:42
  Speaker 5: early because I got pier clancier, so I had to
• 31:46
  Speaker 5: have seven weeks early, so I had to have a medicysterian.
• 31:49
  Speaker 5: And they almost cut through my floating tubes because you know,
• 31:52
  Speaker 5: I should go at this. Mine was like that, and
• 31:54
  Speaker 5: they nearly cut right through them because they didn't.
• 31:56
  Speaker 3: Know that they were like that. Because I said, well,
• 31:59
  Speaker 3: why is it that?
• 32:00
  Speaker 5: I said, because of your last surgeries for hashbrungs everything
• 32:03
  Speaker 5: and you so scar tissue. Everything was like grown back
• 32:07
  Speaker 5: and everything's like moved around and your yours has just
• 32:11
  Speaker 5: done this rather than stay like that. I was like ah,
• 32:15
  Speaker 5: And they said, and we were millimeters from cut and
• 32:18
  Speaker 5: booth through both because we didn't know.
• 32:19
  Speaker 3: It was like it. So but they went cam where
• 32:24
  Speaker 3: they should be.
• 32:26
  Speaker 5: They went, you were really lucky to get pregnant. I
• 32:28
  Speaker 5: was like, really they were, yeah, because they were always
• 32:30
  Speaker 5: twisted as well because of the hashbruns. It was like wow, Okay.
• 32:34
  Speaker 5: Then and then had my my second daughter three years
• 32:39
  Speaker 5: later that went pregnancy was fine. Hashbruns you know, would
• 32:44
  Speaker 5: just get in the way, but just live with it again.
• 32:47
  Speaker 5: Had her had another C section, with her that all
• 32:49
  Speaker 5: went fine, and then we had Jessica.
• 32:54
  Speaker 3: Yeah, and all hit hit the fan. I won't say
• 32:58
  Speaker 3: the word I want to say, but it's all the fan.
• 33:00
  Speaker 2: Literally, you can play the word. It's absolutely fine.
• 33:03
  Speaker 3: It's fun.
• 33:04
  Speaker 5: I mean, let's we get raised and talking about food.
• 33:07
  Speaker 5: So she was born in twenty twelve and I had
• 33:15
  Speaker 5: a C section again because of my last surgeries. They
• 33:18
  Speaker 5: said it was too dangerous to sure eight. So I
• 33:20
  Speaker 5: had a cesarean, and the cesarean itself was awful because
• 33:27
  Speaker 5: because of the four surgeries I'd had before in that area,
• 33:31
  Speaker 5: I had so much star tissue. They got her eight fine,
• 33:34
  Speaker 5: but I had so much garb tissue that all of
• 33:36
  Speaker 5: my organs had fused together, so my bowels attached from
• 33:40
  Speaker 5: a bladder and blah blah blah blah blah, and they
• 33:43
  Speaker 5: said it's too dangerous to close you back up like this,
• 33:46
  Speaker 5: we need to separate at all. So I lolled on
• 33:48
  Speaker 5: the table on the slab as were wide awake, and they.
• 33:54
  Speaker 3: Stopped stopped rogan, and my mum was with me.
• 33:59
  Speaker 2: I said, what next? Go on on?
• 34:00
  Speaker 5: And the surgeon's obviously heard me, put her head over
• 34:03
  Speaker 5: the over theod I'm really sorry, but blah blah blah blah,
• 34:06
  Speaker 5: all the stuff was she never waiting for a general surgeon.
• 34:08
  Speaker 5: But he's in another surgery. So they came back about
• 34:12
  Speaker 5: an hour and a half later. I the there was
• 34:13
  Speaker 5: all the stomach open and everything. He came in and
• 34:16
  Speaker 5: they went, oh, yeah, this is bad. Great, thanks buddy.
• 34:21
  Speaker 3: So I ended up. So my dad and my husband wrote,
• 34:24
  Speaker 3: So I didn't have a clue what was going on?
• 34:25
  Speaker 3: Did you?
• 34:25
  Speaker 5: They would trying to find them because they went for
• 34:27
  Speaker 5: a coffee or whatever and said to my husband, no
• 34:30
  Speaker 5: more children.
• 34:31
  Speaker 3: If she has another child, that's gonna kill her. So
• 34:34
  Speaker 3: I was not well, so the collapse if he was
• 34:39
  Speaker 3: on his own, but luckily Dad was but got her
• 34:42
  Speaker 3: right fine, perfect little baby, six pounds three, tiny, all
• 34:47
  Speaker 3: this dark hair, absolutely stunning. And then literally that evening
• 34:52
  Speaker 3: I had her in the morning that even though I
• 34:53
  Speaker 3: thought something isn't right, she had her tummy was swollen.
• 34:57
  Speaker 3: She just didn't she looked very pale, very a bit sweat.
• 35:00
  Speaker 3: She just didn't look right.
• 35:02
  Speaker 5: And I just said to this, I said to the
• 35:03
  Speaker 5: sergeant and see me. After I see, I said, let's home.
• 35:07
  Speaker 3: To look at my door.
• 35:08
  Speaker 5: Please, something isn't right. She has a pooget. We've got
• 35:11
  Speaker 5: her sings in the family. I had up my dad
• 35:12
  Speaker 5: had that please can someone come and see her. It
• 35:15
  Speaker 5: took me about a day and a half to come
• 35:17
  Speaker 5: and see her. She wasn't feeding.
• 35:19
  Speaker 4: I was trying.
• 35:20
  Speaker 5: I was breastfeeding her. Everything that she ate just came
• 35:23
  Speaker 5: straight back up again, and they were like, oh and
• 35:26
  Speaker 5: all the bid I was like, oh, you know, she's fine,
• 35:28
  Speaker 5: She's fine.
• 35:29
  Speaker 3: She'll pick the bench. And I was like, but that's
• 35:33
  Speaker 3: after the day.
• 35:34
  Speaker 5: The surgeon then came to see her. The actual surgeon
• 35:37
  Speaker 5: who actually and it is still a surgeon to this day.
• 35:39
  Speaker 5: I mean she's lat to, you know, so that's how
• 35:41
  Speaker 5: long he's been in our lives actually came to see
• 35:43
  Speaker 5: her with all his students. Looked mean, tummy looked like
• 35:47
  Speaker 5: a big blister.
• 35:48
  Speaker 3: She chooses it. She's sitting yeah there. That came later on.
• 35:52
  Speaker 3: She she tummy was just so swell that it was vainy.
• 35:57
  Speaker 3: It was it was I look what this was it?
• 36:00
  Speaker 3: Look is it?
• 36:00
  Speaker 5: It was like stretched, it was like shiny. And I
• 36:03
  Speaker 5: was like, but look with her stomach, there's something wrong.
• 36:05
  Speaker 5: I think she's passed like a like a bought a
• 36:10
  Speaker 5: peace size of maconium, so that's why they thought, oh,
• 36:13
  Speaker 5: she has hash bulls. Then I swear it was like
• 36:15
  Speaker 5: a tiny little nugget. So I was no, it was something.
• 36:20
  Speaker 3: This isn't right. She's not eating. Everything that she's going
• 36:23
  Speaker 3: in is coming out again. I said, please just check. No, no,
• 36:27
  Speaker 3: she's fine. Moved her legs, abray all that, and so
• 36:31
  Speaker 3: three days three days I was in and then they
• 36:33
  Speaker 3: sent me home. By day five she was being sick.
• 36:36
  Speaker 3: And I mean it wasn't even milk, it was brown.
• 36:39
  Speaker 3: It's stuck.
• 36:40
  Speaker 5: There was still hadn't pood.
• 36:42
  Speaker 3: It was awful. And I rang them.
• 36:45
  Speaker 5: They gave me their number of the ward that I
• 36:47
  Speaker 5: was on, and they said, realists, if you need any help.
• 36:49
  Speaker 5: So I think this is in the middle of the night.
• 36:51
  Speaker 5: I wouldn't ring my midwife.
• 36:53
  Speaker 3: So I rang them and they laughed at me and said, oh,
• 36:57
  Speaker 3: looks like you're in for a tough night. There. She
• 36:58
  Speaker 3: said to me, my daughter is sitting up, but it's
• 37:05
  Speaker 3: so you need I need someone, SOHM to ring my midwife.
• 37:11
  Speaker 3: And my midwife actually was front. Absolutely, she was with
• 37:14
  Speaker 3: me for all my presentcies. She's phenomenal. Sorry, she she.
• 37:20
  Speaker 5: Promote the next day. The next day, I can't get
• 37:23
  Speaker 5: the too about is that okay? So I said yes, fine,
• 37:27
  Speaker 5: So she came, can I see can I see you
• 37:30
  Speaker 5: feed her?
• 37:31
  Speaker 3: Be So I fed her.
• 37:32
  Speaker 5: Within seconds all came up and it was just brown, slodgy.
• 37:37
  Speaker 5: It was disgusted, and I said, she's got hash buns
• 37:40
  Speaker 5: and she she went, you don't, We're not. I'm not
• 37:42
  Speaker 5: really a dull panic may not be. So she weighed
• 37:47
  Speaker 5: her and she's lost over twelve percent of her birthway.
• 37:49
  Speaker 5: She's gone down to five pound eight So I was like, see,
• 37:52
  Speaker 5: I knew what.
• 37:53
  Speaker 4: I knew it.
• 37:53
  Speaker 3: Anyway, she she went off, made a phone call. She
• 37:56
  Speaker 3: need took the hospital now, So I thought I knew it.
• 37:59
  Speaker 3: I just knew it.
• 38:00
  Speaker 5: So I went up there and they the surgeon against
• 38:03
  Speaker 5: same surgeon put his finger up her barm. All of it,
• 38:06
  Speaker 5: whatever was in her bell just came flooding out and
• 38:09
  Speaker 5: he kept putting his.
• 38:09
  Speaker 3: Finger up there. More came out.
• 38:11
  Speaker 5: She was screaming, bloody murder. I mean, you can imagine
• 38:14
  Speaker 5: how chiny she was. She was five eighth just minute.
• 38:18
  Speaker 5: And he actually sent me at the room because I
• 38:20
  Speaker 5: was still I was so distressed by watching this and
• 38:24
  Speaker 5: I just had this awful C section as well. So
• 38:28
  Speaker 5: I went out of the room. My husband took me
• 38:31
  Speaker 5: out and they we need to keep her in overnight
• 38:33
  Speaker 5: and we're going to have to test her for her
• 38:35
  Speaker 5: sh broons and seas. So this was day five. They sits.
• 38:40
  Speaker 5: She's put into a separate room in Nikki. They did
• 38:42
  Speaker 5: the test, but I wasn't allowed to be in the
• 38:44
  Speaker 5: room because it's not very nice. And they took five
• 38:46
  Speaker 5: biopsies every centimeter from her rectum by every centimeter up
• 38:51
  Speaker 5: of her large intestine, and he said it won't take long,
• 38:54
  Speaker 5: but it might take a couple of days. Within I
• 38:57
  Speaker 5: think it was twelve hours he came to find me.
• 38:59
  Speaker 5: He said, normally say this two parents of children. I
• 39:04
  Speaker 5: think I may have hash bruns. But because you've got
• 39:07
  Speaker 5: the family history and you are so no so much
• 39:10
  Speaker 5: about it, I'm seventy percent sure she has it because
• 39:13
  Speaker 5: in the bilopzies we've done so far, we can't find
• 39:16
  Speaker 5: any gang of them cells.
• 39:17
  Speaker 3: It's right, okay.
• 39:19
  Speaker 5: So I was like, I know what, I knew it
• 39:20
  Speaker 5: and then within I should think that was another another
• 39:24
  Speaker 5: six to twelve hours he confirmed that she had it.
• 39:27
  Speaker 5: But they think that she but he said, but in
• 39:29
  Speaker 5: the last boloxy we can find one cell. There's one there,
• 39:33
  Speaker 5: which means she's gonna she's not gonna be long segment
• 39:35
  Speaker 5: like you your dad. She's gonna be short segment. I
• 39:37
  Speaker 5: was like, right, okay. He said, So what we'll do
• 39:40
  Speaker 5: is we're going to train you to do wash outs.
• 39:43
  Speaker 5: We'll get it in for the first surgery as soon
• 39:45
  Speaker 5: as we can. We might be able to get done
• 39:47
  Speaker 5: in one surgery. I was like, oh, right, okay, said,
• 39:49
  Speaker 5: because it's short segment, you might be able to do
• 39:51
  Speaker 5: it in one. We have done others in one before.
• 39:54
  Speaker 5: She's not gonna after have a bag, nothing like that.
• 39:56
  Speaker 5: So great, well, brilliant, the that's the case. Absolutely fantastic,
• 40:00
  Speaker 5: the stuff like me and my dad have. So then
• 40:03
  Speaker 5: we were sent home to do wash outs for seven
• 40:05
  Speaker 5: weeks I think it was she then she went into hospital.
• 40:09
  Speaker 5: She was in hospital, I would she was in there,
• 40:12
  Speaker 5: I would say for an hour, and we got the
• 40:17
  Speaker 5: buzzer go off, come back. He said, Now, he said,
• 40:20
  Speaker 5: there's much more affected than what I originally have thought.
• 40:24
  Speaker 5: She's we've had to give her an iliostomy bag because
• 40:27
  Speaker 5: which I didn't know. You obviously know what an iniostomy bag,
• 40:29
  Speaker 5: I assume, so.
• 40:32
  Speaker 2: I didn't.
• 40:32
  Speaker 3: I've only ever heard a cost to me? What hell's that?
• 40:36
  Speaker 3: He said? So basically, where you have a cost to me?
• 40:37
  Speaker 5: One side you have the illiostomy, he said, We've had
• 40:39
  Speaker 5: to put it in the bottom half of her small
• 40:41
  Speaker 5: and test the bottom right at the bottom of vers
• 40:43
  Speaker 5: small and test and write where her appendix is. Isn't right,
• 40:48
  Speaker 5: he said, because we don't actually know how much of
• 40:50
  Speaker 5: this bowel is affected. I was like, right, well, herd's
• 40:53
  Speaker 5: going to take forget to get the next surgery, so
• 40:55
  Speaker 5: we're going to have to do We took biopsies all
• 40:57
  Speaker 5: the way along it, and we'll see how much affected?
• 41:00
  Speaker 4: Is that?
• 41:01
  Speaker 3: Right? At play? So?
• 41:04
  Speaker 1: So was it right?
• 41:07
  Speaker 3: Okay? So I think she this was she was born
• 41:11
  Speaker 3: in March. She had a first surgery May. I think
• 41:16
  Speaker 3: it was like the end of Matt Yeah, it was
• 41:18
  Speaker 3: the end of May. It's just for your birthday. So
• 41:20
  Speaker 3: it was in at the end of May. And then
• 41:22
  Speaker 3: she had her last surgery in October. The October so
• 41:26
  Speaker 3: we had to do sort of the lost of me.
• 41:27
  Speaker 3: Oh they're annoyed theare aren't they? From colostomy lost me? Obviously,
• 41:33
  Speaker 3: I have two older daughters, two daughters year older, so
• 41:35
  Speaker 3: doing school runs and every time I went to leave
• 41:37
  Speaker 3: a bag a birth take to score at birth.
• 41:39
  Speaker 5: And I to get a neighbor to take the Oh,
• 41:42
  Speaker 5: so I know she had her suffen surgery and he said,
• 41:49
  Speaker 5: two thirds the same as you and your dad as affected.
• 41:51
  Speaker 5: So we're going to have to remove it and then
• 41:53
  Speaker 5: do the pull through. So that's what they did. And
• 41:57
  Speaker 5: she's really suffered, hasn't she. She's she's like I said,
• 42:02
  Speaker 5: thirteen night, but she's had. She was in that until
• 42:05
  Speaker 5: she's about six, because she's just she was just so incontinent.
• 42:08
  Speaker 3: She just couldn't hold it in. She's had. She's obviously
• 42:13
  Speaker 3: goes to school, but she has a lot to ours
• 42:15
  Speaker 3: school she because she gets sorts of pains and stuff
• 42:18
  Speaker 3: like that.
• 42:18
  Speaker 5: She's still she's still wearing pads this day because she's
• 42:21
  Speaker 5: still in continent. She has to have four lots of
• 42:24
  Speaker 5: the paramoid every day to make because her piso socked.
• 42:27
  Speaker 5: So it kind of thickens up a bit, although I
• 42:31
  Speaker 5: don't really notice, not that I look in her nickcause anymore.
• 42:33
  Speaker 3: She's thirteen.
• 42:34
  Speaker 5: But she says in any different But and she also
• 42:37
  Speaker 5: had to have a wash out every day in the mornings.
• 42:40
  Speaker 5: We're on even doing that now for about three years,
• 42:43
  Speaker 5: I think. But then they wanted to do an ace
• 42:45
  Speaker 5: procedure on her because they said, we think that's going
• 42:48
  Speaker 5: to keep a cleaner because obviously the peris thing's okay,
• 42:52
  Speaker 5: but it goes up the bum washing, it's not gonna
• 42:55
  Speaker 5: get all of it.
• 42:55
  Speaker 3: If her bow's full, it's not going to wash a
• 42:57
  Speaker 3: whole lot out, and it isn't. It's not keeping her clean.
• 43:00
  Speaker 3: So we just said, surely an ace at the put
• 43:03
  Speaker 3: at the right at the end of the large intestine
• 43:07
  Speaker 3: to wash eight from the top, it's gonna be more effective.
• 43:10
  Speaker 3: So we're waiting for that surgery at the moment we
• 43:13
  Speaker 3: were told she could have it and were the years
• 43:15
  Speaker 3: waiting September, so hopefully it's from this September she can
• 43:19
  Speaker 3: have it. But she really just still just really does suffer,
• 43:26
  Speaker 3: poor little buggludent tree. It really does. Like we could
• 43:29
  Speaker 3: on a suner day, she can be the normal thirteen
• 43:33
  Speaker 3: year old, typical nudes, the whole shebang, and like you
• 43:36
  Speaker 3: would think, you literally that you wouldn't think of me.
• 43:39
  Speaker 3: She's a normal height, she's a normal weight, everything, but
• 43:42
  Speaker 3: she's just.
• 43:44
  Speaker 5: I mean probery day. She's twenty sore today, Mum, she's
• 43:48
  Speaker 5: really sore today, and then be cause it takes scrip
• 43:52
  Speaker 5: while she's school. Because the school has been phenomenal. They
• 43:55
  Speaker 5: are absolutely brilliant.
• 43:57
  Speaker 3: I cannot fault them. They have given her own toilet,
• 44:00
  Speaker 3: but she has got she.
• 44:03
  Speaker 5: Has a bag in student support that's full of clean
• 44:06
  Speaker 5: clothes and extra pads and wipes and creams because her
• 44:10
  Speaker 5: bond can get ready saw because obviously the acid in
• 44:13
  Speaker 5: the poo isn't being filtered eight so then that gets
• 44:15
  Speaker 5: ready saw. And because she's in continent still that it
• 44:19
  Speaker 5: burns if she doesn't get to torn it in time,
• 44:21
  Speaker 5: so then then leaves over will be rash basically, I
• 44:24
  Speaker 5: mean she's thirteen with that be rash. I mean that's ridiculous,
• 44:27
  Speaker 5: but you know, so then she has to put cream
• 44:28
  Speaker 5: on that, and then she has to come home because
• 44:31
  Speaker 5: you manage to he to get a phone called, so
• 44:32
  Speaker 5: can you come and get her. She's messed herself and
• 44:34
  Speaker 5: she can't it's too much to clean. So they give
• 44:36
  Speaker 5: her the bag. She goes and sorts of self fake.
• 44:38
  Speaker 5: They've even said she can use the student at not
• 44:41
  Speaker 5: the student, sorry, the staff shower if.
• 44:43
  Speaker 3: She really needs to.
• 44:44
  Speaker 5: So there, They've been amazing. I can't fault the school
• 44:47
  Speaker 5: at all. She just misses a lot of school, which
• 44:49
  Speaker 5: worries me. And she's now at her school they do
• 44:53
  Speaker 5: GCUS seams for three years, not two, and she's now
• 44:56
  Speaker 5: about to start then in September, and I'm a little
• 44:58
  Speaker 5: bit worried she's going to suffer from her she shouldn't do.
• 45:01
  Speaker 5: But I am worried because the school are good, and
• 45:02
  Speaker 5: I'll send work home and on an ex teaching assistant
• 45:06
  Speaker 5: so they know that I can help her and set
• 45:08
  Speaker 5: her up and everything like that. But she really just
• 45:10
  Speaker 5: does suffer, and I just really hope the teacher makes
• 45:14
  Speaker 5: a difference because.
• 45:17
  Speaker 3: It's just so she's clean at school. I think that's
• 45:19
  Speaker 3: the biggest issue. I sort of just want you to
• 45:22
  Speaker 3: be clean at school because she's had to deal with bullies,
• 45:25
  Speaker 3: has not she Yeah, just I mean when she she
• 45:32
  Speaker 3: started junior school. She's now at high school.
• 45:34
  Speaker 5: But when she was seven or eight, she was in
• 45:38
  Speaker 5: I don't know how old the illness start junior school,
• 45:39
  Speaker 5: but no, I mean that that age and she went
• 45:41
  Speaker 5: to the toilet with her bag like she once would
• 45:43
  Speaker 5: went into a certain toilet when she she could hear
• 45:46
  Speaker 5: loads of girls in the in the toilets, and when
• 45:49
  Speaker 5: she came out, they were all crowded around the toilet
• 45:52
  Speaker 5: door and going, oh.
• 45:53
  Speaker 3: Nappy girl, nappy girl, you carry a bag. You had
• 45:56
  Speaker 3: to do yourself. And they were all a year above her.
• 45:58
  Speaker 5: Well, I worked with that group and they all knew me,
• 46:02
  Speaker 5: and they knew about her because she was at the
• 46:05
  Speaker 5: school when I worked there. And luckily one of their
• 46:09
  Speaker 5: fellow students in the same year came in caught them
• 46:11
  Speaker 5: and went and they all went running off, and she
• 46:15
  Speaker 5: told all the teachers. Well, the teachers went mental, as
• 46:18
  Speaker 5: you can imagine things with Jessica really flubbed her that
• 46:23
  Speaker 5: much she's been She's just she's open. Dad said that
• 46:27
  Speaker 5: her great odd beIN She's been fantastic too. She just
• 46:30
  Speaker 5: goes it's who I am. I can't help her. And
• 46:33
  Speaker 5: in the end it got so bad that my husband,
• 46:36
  Speaker 5: who works at that school I worked to in school,
• 46:39
  Speaker 5: he worked at the junior school, ended up perhaps do
• 46:41
  Speaker 5: a talk to the children with grab diagrams and pictures
• 46:45
  Speaker 5: of large and tested and telling them how much she's
• 46:47
  Speaker 5: ever moved. And this is what's the on it is
• 46:48
  Speaker 5: that this is why she has pains. She gets a
• 46:51
  Speaker 5: lot of pain as well. We call them her moments,
• 46:54
  Speaker 5: and she she can't move. She literally is in so
• 47:00
  Speaker 5: much pain she she can not move if she blows
• 47:03
  Speaker 5: up to any sort of exercising, even if it's going
• 47:06
  Speaker 5: for a family walk, she has to stop across her
• 47:08
  Speaker 5: legs and she has to squeeze someone's hand and she
• 47:10
  Speaker 5: gives bright red and sweaty.
• 47:14
  Speaker 3: So we had done at the London More in London Hospital.
• 47:20
  Speaker 5: Whole well, she said, I'll want her to get it.
• 47:23
  Speaker 5: I'll have this teaste house to test her bow see
• 47:26
  Speaker 5: what it is capable of. So claimed back that she
• 47:29
  Speaker 5: definitely will need a nice eventually, which obviously this was
• 47:32
  Speaker 5: about three years ago we did this, and he said
• 47:35
  Speaker 5: the doctor came back and said, she's got a little
• 47:38
  Speaker 5: bit of control.
• 47:38
  Speaker 3: But there's not a nut it.
• 47:41
  Speaker 5: That's and she's getting the pains that she's getting.
• 47:44
  Speaker 3: Because she.
• 47:48
  Speaker 5: Has what there's over a hypersensitive rectum, so she can
• 47:53
  Speaker 5: literally have a fifteen mil of pew in there. As
• 47:57
  Speaker 5: she gets the pains, she feels like she's got a
• 47:59
  Speaker 5: girl she's got to go, but there's nothing there there's
• 48:02
  Speaker 5: not enough in there to get out, so then she's
• 48:04
  Speaker 5: in pain. So that's another reason why what they want
• 48:08
  Speaker 5: her to have the ACE recedure because they said that
• 48:10
  Speaker 5: that would hopefully empty the bow completely stop those pains
• 48:15
  Speaker 5: from happening.
• 48:15
  Speaker 3: They don't know.
• 48:16
  Speaker 5: They're not a hundred percent sure it will work, but
• 48:18
  Speaker 5: we're tried every single avenue. So that's like the last
• 48:22
  Speaker 5: resort really, because what else can you do again. I
• 48:24
  Speaker 5: said to her, you're gonna might just have to live
• 48:26
  Speaker 5: with it, because I get pains like that and I
• 48:29
  Speaker 5: have to just live with it, you know. But I
• 48:32
  Speaker 5: do try and drum into her, you just have to
• 48:35
  Speaker 5: get on with at sweetheart. I'll do everything I can
• 48:37
  Speaker 5: to help you. Obviously, you have to have medication, have it.
• 48:40
  Speaker 5: If you have to grab an ACE fugure.
• 48:42
  Speaker 3: That's up to you.
• 48:42
  Speaker 5: You're thirteen, that's your choice if you want to have it. However,
• 48:48
  Speaker 5: something you're just gonna have to live with and you're
• 48:51
  Speaker 5: gonna have to just push through it. And when it
• 48:53
  Speaker 5: comes to bit at work, when you go out to
• 48:55
  Speaker 5: work one day, you are just gonna if you've got.
• 48:58
  Speaker 3: A time go you can actually have a day off
• 48:59
  Speaker 3: for it.
• 49:00
  Speaker 5: People can't have to just live through. It does nothing
• 49:03
  Speaker 5: about you, but.
• 49:04
  Speaker 2: I'm nothing, No, absolutely not. But just as we've got
• 49:16
  Speaker 2: sort of about a minute or so to go, I
• 49:19
  Speaker 2: just say thank you very much to both of you,
• 49:21
  Speaker 2: well all three of you for coming on and sharing
• 49:27
  Speaker 2: and I guess sort of you know, future wise. I
• 49:30
  Speaker 2: know you've talked a lot about about Jessicird, about the
• 49:32
  Speaker 2: ACE and about and about how that may go, and
• 49:37
  Speaker 2: I guess it's for me to just say that I
• 49:39
  Speaker 2: wish it all the best very much. So with that,
• 49:44
  Speaker 2: and again all three of you with all of your sprungs,
• 49:48
  Speaker 2: because again I wish you all the very best with
• 49:52
  Speaker 2: the genetic testing as well, and all of the tests
• 49:54
  Speaker 2: and whatnot that's going on. But yes, thank you, thank
• 49:58
  Speaker 2: you for all three of you so much for coming on. Yeah,
• 50:04
  Speaker 2: thanks Tom, Thank you for.
• 50:08
  Speaker 1: Listening and being part of this growing community. If you
• 50:11
  Speaker 1: have enjoyed the episode, don't forget to subscribe, leave a review,
• 50:14
  Speaker 1: and share it with someone who might need it. You
• 50:17
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• 50:20
  Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast.
• 50:24
  Speaker 2: See you next week,