Latest / Tom's Hirschsprung's Podcast / Episode 147 - With Kiran Mann

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Episode 147 - With Kiran Mann · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirschsprungs disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
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  Speaker 1: Each episode we will explore real stories and honest conversations
• 0:19
  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in. Hello and welcome to episode 147 of Tom's
• 0:48
  Speaker 1: Hirschsprungs podcast. I am delighted to welcome Ciarán this morning.
• 0:52
  Speaker 2: Good morning.
• 0:52
  Speaker 1: Welcome to the podcast.
• 0:54
  Speaker 2: Thank you. Thank you for having me, Tom.
• 0:56
  Speaker 1: Pleasure. Thanks for coming on. I think we are here
• 1:00
  Speaker 1: to talk about probably one of the rarest stories think
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  Speaker 1: I've ever heard. And I've heard some rare stories, some
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  Speaker 1: really rare stories. But I think we are here to
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  Speaker 1: probably talk about, dare I say, the rarest, probably.
• 1:18
  Speaker 2: Potentially.
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  Speaker 1: I reckon. But would you like to take us, I guess,
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  Speaker 1: back to, well, wherever you'd like to start?
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  Speaker 2: No, absolutely. So I am Cara Caw Man's mummy. And
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  Speaker 2: we welcomed her into the world last year on the
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  Speaker 2: 29th of June, 2025. So a week before, I was... Well,
• 1:43
  Speaker 2: I actually delivered her via emergency. So a week before,
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  Speaker 2: I went to an appointment. And it was simply because,
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  Speaker 2: as a geriatric mother, guys, I... I had, I just
• 1:57
  Speaker 2: had to do an extra check. So I went in
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  Speaker 2: and my husband was away and the sonographer were just
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  Speaker 2: going through, you know, their checks that they do. And
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  Speaker 2: at this point, I believe I was 33, 34 weeks
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  Speaker 2: and everything was fine. But then just said, I see
• 2:18
  Speaker 2: a bit of a shadow. Didn't think anything of it
• 2:20
  Speaker 2: and said, I'm going to pass my notes on to
• 2:23
  Speaker 2: the consultant. And being a geriatric mum, you're just like, oh,
• 2:28
  Speaker 2: don't like the sound of that. Sounds a bit odd.
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  Speaker 2: Then what happened was I went to see the consultant
• 2:33
  Speaker 2: straight after. Literally, it was a back to back appointment.
• 2:36
  Speaker 2: Went next door and all they wanted to know was, OK,
• 2:41
  Speaker 2: we're going to do C-section. It's going to be done
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  Speaker 2: just because I've had issues in the past. But we're
• 2:48
  Speaker 2: talking my kids, elder kids are now teenagers and adults.
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  Speaker 2: But the teens, when I had them, I had a
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  Speaker 2: couple of issues and I had to deliver via emergency anyway.
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  Speaker 2: So it was kind of, right, we're probably likely to
• 3:01
  Speaker 2: go down the elective route. You need to sign these details.
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  Speaker 2: And I was just saying to them that, by the way,
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  Speaker 2: the sonographer's just said something and something's come up on
• 3:09
  Speaker 2: the scan. Do you want to do anything? You know,
• 3:12
  Speaker 2: should we discuss that? No, no, no. When the baby's out,
• 3:15
  Speaker 2: we'll discuss it then. But nothing of it. So I thought, well,
• 3:18
  Speaker 2: I have fun. It can't be that serious. But it
• 3:21
  Speaker 2: just didn't sit well with me. It was such a
• 3:23
  Speaker 2: weird conversation. Um, so that whole weekend, I was just
• 3:29
  Speaker 2: sat there overthinking that, is the baby okay? Something doesn't
• 3:33
  Speaker 2: feel right. And at this point, Tom, I was a
• 3:36
  Speaker 2: bloody elephant, right? I had the most amount of swelling.
• 3:40
  Speaker 2: It was just unlike any other pregnancy. This baby was wild.
• 3:44
  Speaker 2: They were doing acrobats the entire time. It was insane.
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  Speaker 2: And I thought, I've kind of done this a few times,
• 3:51
  Speaker 2: kind of been there, done that hat. And This isn't right.
• 3:55
  Speaker 2: But every single time you said that to a consultant,
• 3:58
  Speaker 2: a GP, nurse, midwife, whoever, they would be, that's great.
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  Speaker 2: Baby's moving. That's all they care for. So I was like,
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  Speaker 2: all right. You know, this is a bit odd, but sure.
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  Speaker 2: Then what happened was I got a call on the Monday.
• 4:13
  Speaker 2: So the sonographer then went up to their supervisor and
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  Speaker 2: basically said, something doesn't sit well with me. Let's get
• 4:20
  Speaker 2: her back in. So they called me and said, look,
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  Speaker 2: I'm really sorry about your appointment. Do you mind if
• 4:24
  Speaker 2: you just come back in and have a quick check again?
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  Speaker 2: And I was like, no, absolutely. Told them about the consultant.
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  Speaker 2: They were like, actually, that shouldn't have happened. We should
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  Speaker 2: have double checked everything, of which we didn't. Apologies. But unfortunately,
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  Speaker 2: at this point, we don't have an appointment available. So
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  Speaker 2: I'm in the Wexham area, Wexham Hospital. We don't have
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  Speaker 2: an appointment. Would you mind going to Oxford? I said
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  Speaker 2: this to you before, Tom, I should have put two
• 4:50
  Speaker 2: and two together because they were saying, just if you
• 4:53
  Speaker 2: go to the, I think it was a fetal clinic
• 4:56
  Speaker 2: that I had to attend. And I was like, sure,
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  Speaker 2: when should I go in? So they called me literally
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  Speaker 2: the next day and says, got an appointment. Can you
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  Speaker 2: rock up? So Oxford for us is about an hour.
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  Speaker 2: I want to talk about John Radcliffe, by the way,
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  Speaker 2: is about an hour and 10 minutes in the car
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  Speaker 2: for us. And I thought, okay, but considering that someone's
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  Speaker 2: taking me seriously. Let's do this. So went in, went
• 5:19
  Speaker 2: for a check. And so they had a professor that
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  Speaker 2: was doing the sonography at the time. And first thing
• 5:27
  Speaker 2: he said was like, yeah, you can tell there's a problem.
• 5:30
  Speaker 2: And I was like, well, sorry, what do you mean
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  Speaker 2: by this? So he did the checks and he was like, yeah,
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  Speaker 2: I can see an obstruction. So for me, I was like, shit,
• 5:38
  Speaker 2: what do you mean an obstruction? So then they started
• 5:41
  Speaker 2: going into the details of, yeah, I can see an
• 5:44
  Speaker 2: obstruction in the small bowel. So one thing is for certain.
• 5:48
  Speaker 2: And then at this point, do you know what they are?
• 5:50
  Speaker 2: You know, the professors, they was bringing students as well.
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  Speaker 2: So one thing they said is one thing for sure
• 5:55
  Speaker 2: is that your birth plan has to change and you're
• 5:58
  Speaker 2: going to deliver here. And I was like, well, OK, fine.
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  Speaker 2: And another thing that I suggest you do is have
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  Speaker 2: a amniocentesis. And I thought, why would you say that?
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  Speaker 2: So I found out during that session that when a
• 6:16
  Speaker 2: baby has something like an obstruction of sorts, so this
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  Speaker 2: was a small bowel atresia is what it turned out
• 6:23
  Speaker 2: to be. Typically, this comes along with other things. So unfortunately,
• 6:27
  Speaker 2: they would then tie this in with your baby will
• 6:30
  Speaker 2: then likely to have you know, an Edward syndrome, a
• 6:36
  Speaker 2: Down syndrome and so on. But, and this is the
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  Speaker 2: thing that really gets me, Tom, and I think this
• 6:42
  Speaker 2: is where it kind of, my emotional journey really threw
• 6:44
  Speaker 2: in was, but at this point, if there is a problem,
• 6:49
  Speaker 2: you can abort. And I was like, sorry? You know,
• 6:54
  Speaker 2: just to throw that off from the kind of, just
• 6:56
  Speaker 2: a conversation of that you have options if that happens.
• 7:00
  Speaker 2: I was like, firstly, I had my son 13 years
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  Speaker 2: before that, and he was born seven weeks early. And
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  Speaker 2: if you looked at him now, you'd never be able
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  Speaker 2: to tell that there'd be anything wrong with him at all, right?
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  Speaker 2: He was absolutely perfect. But you're telling me literally on
• 7:15
  Speaker 2: the cusp of 34 weeks that, oh, you have an
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  Speaker 2: option to abort if you wanted to because the baby's
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  Speaker 2: going to have special needs. That threw me off massively.
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  Speaker 2: Dare I say, I spoke to then the senior midwife
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  Speaker 2: that was there as well. And she was like, no,
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  Speaker 2: we have to just give you options. And I think
• 7:34
  Speaker 2: this is a bit that gets me now is that
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  Speaker 2: the NHS just likes to protect themselves, that they give options.
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  Speaker 2: It's not like we make your decisions for you. But
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  Speaker 2: it was shit. And to be told that and, you know,
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  Speaker 2: bless hubby's away. He's on business. I'm there. My mum's just,
• 7:51
  Speaker 2: you know, bless her. I love her so much. She's
• 7:52
  Speaker 2: just a prayer in life. She's like, everything's gonna be fine.
• 7:55
  Speaker 2: Everything's gonna be good. They then said, after all this,
• 7:59
  Speaker 2: come back in a couple of days and we'll have
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  Speaker 2: the conversation. We've got a professor that rocks up every month.
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  Speaker 2: And I think it was like the third week or
• 8:09
  Speaker 2: something odd that they come in. So they didn't come
• 8:11
  Speaker 2: to Kilimanjaro once. And if you don't attend this one,
• 8:15
  Speaker 2: we think it's going to be too late. Fine. Anyway,
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  Speaker 2: ended up going back in two days time and there
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  Speaker 2: was an army there. I remember just being collected by
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  Speaker 2: one of the professors and saying, oh, we're just discussing
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  Speaker 2: your case. Walked in and there was nine people in
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  Speaker 2: the room. And like I was saying at this point,
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  Speaker 2: I'm just thinking you guys are throwing me off completely.
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  Speaker 2: By the way, at this point, there is no Hirschsprungs.
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  Speaker 2: There is no mention of this word whatsoever. Just small
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  Speaker 2: bowel obstruction. That's all I was left with. Um, so
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  Speaker 2: they did everything and they were just saying, okay, we'll
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  Speaker 2: do the elective. Give me a day. We'll see them. Um,
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  Speaker 2: Lo and behold, that weekend, my daughter had her leavers due.
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  Speaker 2: We went for a party. I wasn't feeling great. I
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  Speaker 2: was knackered. Like I said, I was a bloody elephant
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  Speaker 2: and I just wasn't feeling it. But I had to
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  Speaker 2: rock up because I knew that for at least a
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  Speaker 2: couple of weeks, I'd be kind of out of action.
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  Speaker 1: Right.
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  Speaker 2: And I remember there was one mom who's awesome. She
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  Speaker 2: kept saying, is the baby moving? Is the baby moving?
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  Speaker 2: I was like, this baby moves all day long. But no,
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  Speaker 2: baby's just probably having a bit of a sleep, but fine.
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  Speaker 2: But it just sat in my head. So we ended
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  Speaker 2: up leaving the party about 11-ish at night. And I
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  Speaker 2: was driving back and Harvey goes to me, are you
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  Speaker 2: all right? And I was like, no, something doesn't feel right.
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  Speaker 2: And he was like, what do you mean? And I said, well,
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  Speaker 2: the mum's just asked me if baby's moving. And I
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  Speaker 2: just said, from this afternoon, I just don't feel it.
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  Speaker 2: I'm going to call triage. So I ended up calling
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  Speaker 2: up triage. And just remember at this point, they're saying
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  Speaker 2: to me, right, you've got to go to Oxford. You're
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  Speaker 2: delivering in Oxford. I was like, I can't be bothered
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  Speaker 2: to go to Oxford. It's so far. It's so late.
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  Speaker 2: I just don't want to do it. Then call my
• 9:52
  Speaker 2: sister-in-law over to look after the kids. And I said,
• 9:54
  Speaker 2: you know, I'm just going to have a quick check.
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  Speaker 2: So I called up Wexentry. I was saying, look, just
• 9:58
  Speaker 2: want to see if baby's all right. It was the
• 10:00
  Speaker 2: hottest day of the summer so far. And just remember,
• 10:03
  Speaker 2: 2025 was a hot summer. So I just thought, no,
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  Speaker 2: I'm knackered. But let me just go check things out.
• 10:10
  Speaker 2: Went in and they put the belts on. And first
• 10:12
  Speaker 2: thing you hear is a heartbeat. And I was like, great, done. Thanks.
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  Speaker 2: Just that's all I wanted to check. They then came back.
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  Speaker 2: The doctor says, we're just going to keep you on
• 10:23
  Speaker 2: for a few minutes. I'm just going to do a
• 10:25
  Speaker 2: couple of checks. And that was it. Again, Tom, I
• 10:28
  Speaker 2: was really bloody, not, you know, looking around, doing any
• 10:32
  Speaker 2: of it, just going with the flow. And I was like, sure.
• 10:35
  Speaker 2: And just remember at this point, I've not got no
• 10:37
  Speaker 2: bloody bag. I've got no paperwork. I've got zero. So
• 10:42
  Speaker 2: I'm like, okay, fine. We'll stay on. And then there
• 10:45
  Speaker 2: was this traffic light system, right? And it was on
• 10:49
  Speaker 2: the wall. And my hubby must have just taken a
• 10:51
  Speaker 2: picture again. Oh, it's a bit odd. So there was like,
• 10:55
  Speaker 2: they had this thing of if the heartbeat is a
• 10:58
  Speaker 2: certain rate, if you're basically X, Y, Z, all this list,
• 11:03
  Speaker 2: you're in kind of the hot zone. And I was like, oh, shit,
• 11:06
  Speaker 2: all of that. And then all of a sudden, the
• 11:10
  Speaker 2: doctor comes back and said, I was just on the
• 11:11
  Speaker 2: phone to Oxford. So we're going to deliver baby. And
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  Speaker 2: I was like, so you're going to deliver what? Deliver
• 11:18
  Speaker 2: the baby. What I mean, I've had two previous emergencies.
• 11:24
  Speaker 2: When this turned up and this was at half 11,
• 11:26
  Speaker 2: 12 at night, it was just a whirlwind. I had
• 11:31
  Speaker 2: check after check. I started shaking like a nutter. I was,
• 11:37
  Speaker 2: it just threw me completely how it was. Long story
• 11:41
  Speaker 2: short of it, 2.16, she arrives. I don't hear a
• 11:47
  Speaker 2: baby crying. Right. That's the first thing you hear. And
• 11:50
  Speaker 2: when I mean this C-section was so fast, it was surreal.
• 11:58
  Speaker 2: The anaesthetist, absolutely incredible. Like he was phenomenal. Always checking.
• 12:03
  Speaker 2: Are you okay? Are you okay? Knew this was complete
• 12:05
  Speaker 2: shock to my system. The doctors were just getting on
• 12:08
  Speaker 2: with it because for them, they just need to deliver
• 12:11
  Speaker 2: a healthy and a baby that's alive and well. Don't
• 12:15
  Speaker 2: hear the baby cry. I start panicking. what actually happened
• 12:20
  Speaker 2: was the cord was around her neck, and I think
• 12:23
  Speaker 2: that was on two, three occasions. So that movement that
• 12:26
  Speaker 2: she was doing, it was obviously cutting a supply at
• 12:30
  Speaker 2: this point. And then all of a sudden, I hear
• 12:33
  Speaker 2: a cry, and then they scream out, do you want
• 12:37
  Speaker 2: to know what it is? And I was like, yeah,
• 12:39
  Speaker 2: it's a girl. Amazing. Hear the cry, awesome. But then
• 12:45
  Speaker 2: they still don't bring her. They do one little... Here
• 12:48
  Speaker 2: she is. And then take her away again. And all
• 12:52
  Speaker 2: I remember is hubby was saying there was something with
• 12:56
  Speaker 2: her thumb. So she's got a hyperplasty thumb, which is
• 12:58
  Speaker 2: basically a thumb, which has got cartilage in it, but
• 13:01
  Speaker 2: not a bone. So it's a bit of a floppy thumb,
• 13:02
  Speaker 2: but that, you know, that's a plastic thing. Not, not
• 13:04
  Speaker 2: a big deal whatsoever, but they took her away and,
• 13:10
  Speaker 2: you know, like it was just surreal. They took out,
• 13:14
  Speaker 2: I believe, 15 syringes of meconium. out of her. And
• 13:21
  Speaker 2: then obviously they whisked her away. And I think what
• 13:24
  Speaker 2: got me the most is that they whisked her away
• 13:27
  Speaker 2: at this point and said, right, we're going to take
• 13:30
  Speaker 2: her to Oxford. And I said to them, right at
• 13:32
  Speaker 2: the start when I got there, I said, whatever you do,
• 13:35
  Speaker 2: I want to go with my baby. And they were like, sure, sure, sure, sure, sure.
• 13:40
  Speaker 2: Didn't say anything. They kept smiling. I remember when they
• 13:44
  Speaker 2: came back to kind of stitch me up. The doctor's
• 13:48
  Speaker 2: I'm sure the doctors were having a bit of a
• 13:50
  Speaker 2: moment because they were just like, oh, where are you from?
• 13:52
  Speaker 2: Where are you this? And I'm just sat there bawling
• 13:54
  Speaker 2: my eyes out like an absolute nutter. They're having a social.
• 13:57
  Speaker 2: The anaesthetist, bless him, was coming in to check me
• 14:00
  Speaker 2: with these guys. It was really odd. And then all
• 14:02
  Speaker 2: of a sudden, calls my husband and she's like, oh,
• 14:06
  Speaker 2: I think she's got a hematoma. Do you want to
• 14:08
  Speaker 2: take a picture? It was so blasé, Tom. I cannot
• 14:11
  Speaker 2: tell you. This is all me. And I'm thinking... where
• 14:15
  Speaker 2: have you taken my baby? What's going on? She was
• 14:17
  Speaker 2: obviously whisked off to like the Wexham kind of scaboo.
• 14:20
  Speaker 2: They've got a really lovely unit there from what I
• 14:22
  Speaker 2: gathered afterwards. But anyway, they said Oxford is going to
• 14:28
  Speaker 2: come collect her. And I was like, that's fine. I'm
• 14:29
  Speaker 2: going with her, right? I kept getting nods, nothing else.
• 14:35
  Speaker 2: And then I didn't go see her afterwards, right? Because
• 14:38
  Speaker 2: I'm just lying on a table. I'm up, you know,
• 14:41
  Speaker 2: post C-section. And I get taken into a room and
• 14:44
  Speaker 2: I'm just left. I get told my husband's going home
• 14:48
  Speaker 2: to go get ready. He's done obviously a 24 hour.
• 14:51
  Speaker 2: He's been up and he's then got to get to Oxford.
• 14:56
  Speaker 2: They're going to blue light her all the way to Oxford.
• 14:59
  Speaker 2: By the way, the ambulance service, incredible. Like what they
• 15:02
  Speaker 2: do is phenomenal. So I just sat there on my
• 15:05
  Speaker 2: tod in this room thinking I'm all alone because it's what,
• 15:08
  Speaker 2: four o'clock in the morning. And then I hear a
• 15:12
  Speaker 2: baby cry. And I think that's probably, again, one of
• 15:14
  Speaker 2: the most traumatic things is they put you onto this
• 15:17
  Speaker 2: shared ward of someone else having a baby, but you're
• 15:20
  Speaker 2: there by yourself as if, dare I say, you've done
• 15:23
  Speaker 2: something wrong and it's not. And that was a really
• 15:26
  Speaker 2: horrible place to be put into. But all of a sudden,
• 15:31
  Speaker 2: I then get knock, knock on the door in this
• 15:33
  Speaker 2: kind of shared ward. It was just the ambulance service
• 15:37
  Speaker 2: come back saying, we wanted you to see her before
• 15:40
  Speaker 2: we go. And it just threw me completely. Like there
• 15:44
  Speaker 2: was this just perfect little baby that had just been there.
• 15:48
  Speaker 2: And when I mean the incubator they brought her in, Tom,
• 15:52
  Speaker 2: Jesus Christ, the amount of tubes, monitoring systems, everything that
• 15:57
  Speaker 2: was plugged in, oxygen, all the rest was just there.
• 16:00
  Speaker 2: And it just, it's so overwhelming, right? I never wanted
• 16:04
  Speaker 2: to be in that situation. I don't think any parent
• 16:06
  Speaker 2: that's been on this ever wants to be put in that. So, Yeah,
• 16:10
  Speaker 2: that was really surreal. But they allowed me to hold her.
• 16:14
  Speaker 2: They allowed me to say goodbye. And they said, we're
• 16:17
  Speaker 2: going to look after her. And I remember there was
• 16:19
  Speaker 2: one guy, and I can't remember what his name is
• 16:21
  Speaker 2: for the life of me, but amazing service. He said, Kieran,
• 16:24
  Speaker 2: whatever you do, do not discharge yourself. And he says,
• 16:28
  Speaker 2: get better. We're going to look after her. And I
• 16:31
  Speaker 2: was like, sure. Did I listen? Hell no. I then
• 16:37
  Speaker 2: got taken upstairs to another shed port. So my baby's gone.
• 16:40
  Speaker 2: She goes to, gets to Oxford, I think about 6.30,
• 16:43
  Speaker 2: 7 o'clock. Hubbies met her there, straight into Niku. They
• 16:47
  Speaker 2: were phenomenal, apparently doing everything that they needed to whilst
• 16:51
  Speaker 2: I'm just stuck there. I've been taken upstairs. The midwives
• 16:54
  Speaker 2: are just like, this is bullshit. You shouldn't even be here.
• 16:57
  Speaker 2: They should have taken you. They were trying to arrange
• 17:00
  Speaker 2: for me to get over. None of that happened. Anyway,
• 17:04
  Speaker 2: one thing I learned was that she was going to
• 17:06
  Speaker 2: have an operation on day one, right? So day one
• 17:10
  Speaker 2: of life technically wasn't on the 29th, but on the 30th,
• 17:13
  Speaker 2: so a fresh day. So they then took her. No,
• 17:21
  Speaker 2: I discharged myself that evening, which I shouldn't have, but
• 17:25
  Speaker 2: I needed to. Nobody was going to take me to
• 17:27
  Speaker 2: my baby, so I couldn't really care. I got myself over,
• 17:30
  Speaker 2: so my brother dropped me off, and I got there
• 17:32
  Speaker 2: in the evening, and I saw her, And again, it's
• 17:35
  Speaker 2: massively overwhelming when you see a baby in just incubators
• 17:37
  Speaker 2: and so on. You know, it wasn't, she wasn't on oxygen,
• 17:40
  Speaker 2: but she was just, she had a long line in.
• 17:44
  Speaker 2: She was just, you know, she was there. They were
• 17:46
  Speaker 2: looking after her. She had this aspirates wire that obviously
• 17:49
  Speaker 2: they do via NG tube. Everything was going on and
• 17:52
  Speaker 2: they had monitors on it. Day one of life, technically
• 17:56
  Speaker 2: the next day, they took her away. Did an operation,
• 18:01
  Speaker 2: small bowel atresia is what it was called. She was
• 18:03
  Speaker 2: left with 65 centimetres of bowel left, right? And typically
• 18:09
  Speaker 2: any newborn that is born, just for anyone that wanted
• 18:12
  Speaker 2: to know, it's about 100. It could be anything between
• 18:14
  Speaker 2: 90 to 120 centimetres is what they should be born with.
• 18:17
  Speaker 2: So that's halved, right? And what they call it is
• 18:22
  Speaker 2: they fashioned a stoma. So they gave her a stoma.
• 18:26
  Speaker 2: And that was it. So again, I checked myself into
• 18:29
  Speaker 2: John Radcliffe maternity thereafter because I was high on morphine
• 18:32
  Speaker 2: and all the rest of it. And hubby was downstairs
• 18:35
  Speaker 2: with her, which was fine because they would give us
• 18:38
  Speaker 2: a little side room. They were doing all the checks.
• 18:41
  Speaker 2: And at this point, again, no Hirschsprungs, right? This is
• 18:43
  Speaker 2: just all small bowel treasure that they're dealing with. She's fine.
• 18:50
  Speaker 2: There's no major concerns. I remember going down. They were like, hi, stoma.
• 18:55
  Speaker 2: Do you want to learn how to do it? And
• 18:56
  Speaker 2: for me, and I don't know, I'm sure I've had
• 18:59
  Speaker 2: some parents on this podcast already say it, but I
• 19:02
  Speaker 2: was bloody terrified. Like I, dare I say, was bricking it.
• 19:07
  Speaker 2: I saw this and I was like, I'm sorry, that's no.
• 19:10
  Speaker 2: When they said, do you want to learn? I was like, no.
• 19:12
  Speaker 2: So my cousin was there, an absolute legend. She videoed
• 19:14
  Speaker 2: the entire thing just so that she could have everything there.
• 19:18
  Speaker 2: But they were just, it was so normal to them,
• 19:20
  Speaker 2: but just so abnormal to me. I just, I didn't
• 19:23
  Speaker 2: get any of this. And I thought, my baby doesn't
• 19:25
  Speaker 2: deserve this. It was awful. Anyway, going through the motions,
• 19:31
  Speaker 2: she was in NICU for a week. Because she was
• 19:35
  Speaker 2: fine otherwise, they were like, you know what, we're just
• 19:37
  Speaker 2: going to send her to the surgical ward. And when
• 19:41
  Speaker 2: you've got babies with small bowel atresias, typically they are
• 19:46
  Speaker 2: on this thing called parental nutrition. And parental nutrition is
• 19:50
  Speaker 2: is just a bag of vitamins. So, you know, when
• 19:52
  Speaker 2: you go to a hospital and you get this bag
• 19:54
  Speaker 2: of liquids that are sat on kind of, you know,
• 19:57
  Speaker 2: a prong somewhere, that essentially gives her all the vitamins
• 20:01
  Speaker 2: and the fats and everything that she needs to be OK.
• 20:04
  Speaker 2: They refuse to give her milk at this point. So
• 20:07
  Speaker 2: she was nil by a mouth for so long. And
• 20:09
  Speaker 2: they were just like, look, let's start some milk. And
• 20:11
  Speaker 2: when I talk about milk, guys, we're talking about two
• 20:14
  Speaker 2: mil every two hours. It was so random. And every
• 20:19
  Speaker 2: single time that they would give us some milk, they
• 20:21
  Speaker 2: would check her aspirates. So when I talk about aspirates
• 20:24
  Speaker 2: is where essentially a tube is put down all the
• 20:28
  Speaker 2: way to the stomach to make sure that there's no
• 20:31
  Speaker 2: other obstructions. And what they do is they syringe it
• 20:34
  Speaker 2: back out to make sure that it's clear that And
• 20:36
  Speaker 2: it's landed in the place that it should be. It
• 20:38
  Speaker 2: should just land in the stomach and then it goes
• 20:40
  Speaker 2: through the digestive system. That's what they're checking. If it
• 20:44
  Speaker 2: comes out horrible and green, which obviously they took out
• 20:46
  Speaker 2: so much meconium and, you know, she was getting all
• 20:49
  Speaker 2: these horrible atheroids before, it was, dare I say, in
• 20:53
  Speaker 2: the first few days, it was kind of creamish. But
• 20:58
  Speaker 2: then it started going to a milky green, which was
• 21:01
  Speaker 2: really odd. Days after, again, Whenever we would have that,
• 21:08
  Speaker 2: it would be, let's discard the green and let's try again.
• 21:12
  Speaker 2: So it was always this whole thing, let's start again,
• 21:14
  Speaker 2: let's start again. And I would like to say that,
• 21:16
  Speaker 2: you know, post one week when we were in Tom's ward,
• 21:19
  Speaker 2: which is a surgical ward in John Radcliffe, the nurses there,
• 21:24
  Speaker 2: my God. If I could just do a dedication just
• 21:28
  Speaker 2: to those nurses, oh my God, they were phenomenal, Tom.
• 21:33
  Speaker 2: They were out of this world great. They really looked
• 21:36
  Speaker 2: after us as a family. And we're just honest. You know,
• 21:41
  Speaker 2: when you get the surgeons coming around, they are very
• 21:44
  Speaker 2: black and white. And sometimes you just need a bit of,
• 21:49
  Speaker 2: it's going to be okay. I feel that that kind
• 21:52
  Speaker 2: of just gets missed. But they're doing their job fine. Anyway,
• 21:57
  Speaker 2: we're now into week five. And the surgeon comes saying,
• 22:02
  Speaker 2: for some reason, It's all coming out. So meaning she
• 22:05
  Speaker 2: wasn't absorbing and that was a concern. But you know what?
• 22:08
  Speaker 2: We're going to do a reversal and it will work
• 22:10
  Speaker 2: on the inside. I remember that conversation. So six weeks
• 22:14
  Speaker 2: post everything going on. I was like, I'm fine. Then
• 22:17
  Speaker 2: me speak to my husband that we're back on this.
• 22:22
  Speaker 2: You know, we're going to get back to normal. Everything's
• 22:24
  Speaker 2: going to be fine.
• 22:25
  Speaker 1: Great.
• 22:27
  Speaker 2: Did the reversal and we, obviously we had a mucous
• 22:33
  Speaker 2: fissure and the stoma and it was, I can't remember
• 22:38
  Speaker 2: what it's called, a fish mouth. So the larger side
• 22:41
  Speaker 2: would then put the mucous fissure in and it would
• 22:43
  Speaker 2: just kind of be intact for. And at this point,
• 22:45
  Speaker 2: we found out also that they did a measurement again
• 22:48
  Speaker 2: and it had grown by 10 centimeters, a small band.
• 22:50
  Speaker 2: I was like, yes, it's going to work. Everything's going
• 22:52
  Speaker 2: to be fine. Great. Anyway, so we went through this
• 22:56
  Speaker 2: whole process and post-surgery was awful, Tom. Like she just
• 23:02
  Speaker 2: wasn't happy. Her pain management was awful. She was in hysterics.
• 23:09
  Speaker 2: The nurses even were really concerned. And I didn't know
• 23:13
  Speaker 2: these things existed, but there was a pain management team
• 23:16
  Speaker 2: and they were just saying, right things don't feel right
• 23:19
  Speaker 2: but they were giving her um morphine so they were
• 23:23
  Speaker 2: given the oral morphine so everything's done via the long
• 23:25
  Speaker 2: line um and they obviously were giving her antibiotics so
• 23:29
  Speaker 2: as soon as you kind of cut body or you
• 23:30
  Speaker 2: know kind of go in any sort of surgery they
• 23:33
  Speaker 2: have to obviously have antibiotics right to make sure everything's
• 23:35
  Speaker 2: okay but at this point we are in tail end
• 23:39
  Speaker 2: of july um i think at this point you're just
• 23:44
  Speaker 2: things will get better but they just weren't on we
• 23:46
  Speaker 2: were given a milk Again, the color was green. She
• 23:50
  Speaker 2: wasn't feeling great. And at this point, guys, when you
• 23:53
  Speaker 2: do a reversal, you expect to poo. We weren't getting poos. We,
• 24:01
  Speaker 2: bless her, were giving her so many glycerine. And I
• 24:04
  Speaker 2: know that you've heard that word many times. So we
• 24:07
  Speaker 2: were giving her glycerine suppositories like no tomorrow. We were
• 24:12
  Speaker 2: just every few hours, oh, we'll try again. We'll try again.
• 24:15
  Speaker 2: And I remember the nurses, because they were so on
• 24:17
  Speaker 2: board with this at this point, they were like, oh
• 24:19
  Speaker 2: my God, guess what? I think you need to change
• 24:22
  Speaker 2: their nappy. I think you need to go do it.
• 24:24
  Speaker 2: So I remember we used to get a few surprises,
• 24:26
  Speaker 2: but what I mean, this was coming out dark green.
• 24:32
  Speaker 2: It wasn't normal considering we were giving her, you know,
• 24:36
  Speaker 2: we were doing successful. We were doing five mil every
• 24:39
  Speaker 2: three hours. You know, like what I mean, this baby
• 24:41
  Speaker 2: was nearby mad, but for them, she was on the
• 24:44
  Speaker 2: PN and she was on the PN 24 hours. So
• 24:46
  Speaker 2: it was like, she's getting her stuff, whether, you know,
• 24:48
  Speaker 2: this milk and stuff works, it's fine. And at this
• 24:51
  Speaker 2: point you're seeing all these parents come and go and,
• 24:53
  Speaker 2: you know, we're going in. One thing that I feel
• 24:56
  Speaker 2: that none of the parents have really spoken about is
• 24:58
  Speaker 2: that paperwork before you go into an operation. So they
• 25:01
  Speaker 2: give you this kind of really scaremongering list of your
• 25:06
  Speaker 2: baby could have this and your child could have X,
• 25:08
  Speaker 2: Y and Z. And when I talk about these points,
• 25:10
  Speaker 2: it's just, They could have scar adhesions. And I didn't
• 25:13
  Speaker 2: realize this, but scar adhesions could be a thing for life.
• 25:16
  Speaker 2: So this can happen in a few years time that
• 25:18
  Speaker 2: this thing would still rear its ugly head and she could,
• 25:24
  Speaker 2: you know, have an emergency operation. Anyway, time is passing
• 25:28
  Speaker 2: and I was getting really pissed off, right? Because I'm like,
• 25:30
  Speaker 2: come on, man, this is not working. Something's not right.
• 25:33
  Speaker 2: Something needs to give. I remember being there and I
• 25:36
  Speaker 2: used to sleep by her bed, by the way. So
• 25:38
  Speaker 2: I was on ward the entire time. My family were
• 25:41
  Speaker 2: in Ronald McDonald. God love them as well. Great charity,
• 25:44
  Speaker 2: by the way, guys. So when you see that spinning wheel,
• 25:46
  Speaker 2: when you go to McDonald's, chuck them a couple of
• 25:49
  Speaker 2: bucks because it's really, really worth it. It really, really
• 25:51
  Speaker 2: helps families stay together during kind of the most hardest
• 25:55
  Speaker 2: times of their lives. And I think it's massively important. Anyway,
• 25:59
  Speaker 2: I remember my husband had stayed and we kind of tagged.
• 26:02
  Speaker 2: I remember going back. And she had been sick. Cara's
• 26:06
  Speaker 2: not been sick ever. So they'd given her some milk.
• 26:11
  Speaker 2: And at this point, I think it must have been
• 26:12
  Speaker 2: like 19 mil or something. Gave her something. I remember
• 26:17
  Speaker 2: the nurse going, oh, I didn't see that. The surgeons,
• 26:20
  Speaker 2: we had a professor actually who was looking after her care.
• 26:23
  Speaker 2: Phenomenal lady. Prof is what everyone called her. And she
• 26:27
  Speaker 2: had her team. She walked over and I was like,
• 26:30
  Speaker 2: she's just been sick on me. And she was sick
• 26:32
  Speaker 2: on the bed. And she was like, oh. We lied
• 26:35
  Speaker 2: her down and she had a really distended stomach, right?
• 26:40
  Speaker 2: A commonality of Hirschsprungs. So all these things are going on.
• 26:44
  Speaker 2: And I remember one thing that she had said to
• 26:47
  Speaker 2: her colleague. She was like, look, distended stomach. As if
• 26:49
  Speaker 2: I wasn't there. And I don't mean this in any disrespect,
• 26:52
  Speaker 2: but I thought, no shit, Sherlock. So what does that mean?
• 26:56
  Speaker 2: What do we do? She then walked off saying, we
• 26:59
  Speaker 2: need to monitor this. And I was like, okay. Then
• 27:02
  Speaker 2: what happened, and I recall listening to your podcast, Tom,
• 27:06
  Speaker 2: is when I was sat there looking after her, just
• 27:09
  Speaker 2: giving her a cuddle, and she was just, her heart
• 27:12
  Speaker 2: rate was through the roof. And I thought, right, this
• 27:16
  Speaker 2: isn't normal. And I remember Jess, who's, we call her
• 27:20
  Speaker 2: Auntie Jess now, all the Tom's ward nurses are now
• 27:24
  Speaker 2: aunties because they've just been part of the family. And
• 27:26
  Speaker 2: I was like, Jess, do you want to come over?
• 27:28
  Speaker 2: Something doesn't feel right. So she looked at her, she monitored,
• 27:31
  Speaker 2: and she was like, Yeah, something doesn't feel right. Anyway,
• 27:34
  Speaker 2: it ended up because the surgery kind of office is there.
• 27:38
  Speaker 2: Called the professor and someone over and they were saying
• 27:40
  Speaker 2: something's not right. Monitored her saying, we need to do something.
• 27:46
  Speaker 2: Prof came back, sat us down and saying, I'm really sorry,
• 27:49
  Speaker 2: but something doesn't feel right. We need to go back in.
• 27:52
  Speaker 2: I was like, what? What are you guys talking about?
• 27:56
  Speaker 1: This is.
• 27:59
  Speaker 2: literally three or four weeks after we've just done closure
• 28:03
  Speaker 2: no sorry closure was on the 6th of august this
• 28:05
  Speaker 2: is tail end of august i'm like something's not given
• 28:08
  Speaker 2: here what do you mean you've got to go in
• 28:10
  Speaker 2: we might need to fashion stoma my son was there
• 28:13
  Speaker 2: i'm there hubby's there we're all in tears because it's
• 28:16
  Speaker 2: just like you're thrown off completely right you we didn't
• 28:20
  Speaker 2: expect none of this so you're like okay again Another
• 28:25
  Speaker 2: doctor rocks up with the paperwork that you could have
• 28:28
  Speaker 2: scar adhesions, you could have this, you could have that.
• 28:31
  Speaker 2: And they have to write it down now. And the
• 28:34
  Speaker 2: worst case is we could lose your baby. But we've
• 28:36
  Speaker 2: gone in three times already, Tom. This is some effed
• 28:39
  Speaker 2: up shit. And nothing prepares you for it. Nothing prepares
• 28:44
  Speaker 2: you to say goodbye to your kid. And... When you're
• 28:49
  Speaker 2: away from the family and so on anyway, you're isolated anyway.
• 28:52
  Speaker 2: But this is probably the most loneliest time, even though
• 28:54
  Speaker 2: you've got kind of, you know, your husband and your
• 28:56
  Speaker 2: kid there. I'm sure the same for my husband and
• 28:59
  Speaker 2: my son as well. But just a horrible, horrible feeling. Anyway,
• 29:02
  Speaker 2: she goes in. And then hubby calls me because I
• 29:06
  Speaker 2: had to go drop my kid off. It was just,
• 29:08
  Speaker 2: it was all going off too much. I've come back and...
• 29:14
  Speaker 2: she said it was a success and I was like
• 29:16
  Speaker 2: what does that mean we didn't have to do stoma
• 29:19
  Speaker 2: what had happened was she had a scar adhesion her
• 29:24
  Speaker 2: she had a scar adhesion where her bowel was stuck
• 29:29
  Speaker 2: to her liver they then dare I say unclinked it
• 29:35
  Speaker 2: unhinged it whatever it was took it apart they then
• 29:39
  Speaker 2: did a washout and it worked. Poo came out. Things
• 29:47
  Speaker 2: were going well. Closed it back up, on to back
• 29:51
  Speaker 2: on to antibiotics and all the rest of it again.
• 29:56
  Speaker 2: But they did a biopsy this time And they were like, look,
• 30:02
  Speaker 2: we've got to see this and we've just got to
• 30:04
  Speaker 2: make sure that, I can't remember the word or what
• 30:08
  Speaker 2: it was. It was just, I think there was a
• 30:10
  Speaker 2: word for it and please forgive me. But the doctor
• 30:13
  Speaker 2: just said, we think it's just a lazy bowel. Let's
• 30:15
  Speaker 2: give it a few days rest and then we'll start again.
• 30:18
  Speaker 2: Meaning let's start giving her milk again and we'll get
• 30:20
  Speaker 2: onto this. So at this point, she's like 60 plus
• 30:23
  Speaker 2: days with a long line and the nurses are like,
• 30:26
  Speaker 2: this is the longest time we've ever seen a kid
• 30:28
  Speaker 2: with a long line in. But I'm like, we don't
• 30:31
  Speaker 2: want to do anything else with it, meaning I didn't
• 30:32
  Speaker 2: want to switch to a Hickman, hoping that we were
• 30:35
  Speaker 2: just going to pop this out and we were going
• 30:36
  Speaker 2: to go home.
• 30:37
  Speaker 1: Right.
• 30:37
  Speaker 2: Everything's going to be OK. But you keep praying, keep praying.
• 30:41
  Speaker 2: And at this point, there's so much you can do. Right.
• 30:45
  Speaker 2: So we started the milk again. Wasn't going well. And
• 30:49
  Speaker 2: by the way, with everything that was going on, my
• 30:52
  Speaker 2: poor baby caught flu. She had got sepsis. And obviously
• 31:00
  Speaker 2: she was post-operation. So she had three sets of antibiotics
• 31:05
  Speaker 2: that were given to her. And we were put into
• 31:08
  Speaker 2: one of the side rooms. You're only put into a
• 31:09
  Speaker 2: side room when you're infectious as such. And I was like,
• 31:12
  Speaker 2: how on earth does a baby go from all of
• 31:14
  Speaker 2: this and then having to fight three infections as well?
• 31:19
  Speaker 2: And you hear sepsis, you hear the worst case scenarios.
• 31:21
  Speaker 2: But she was fighting this. Still on the parental nutrition
• 31:26
  Speaker 2: 24 hours a day. Fine. So nothing didn't seem it.
• 31:31
  Speaker 2: We were doing the glycerin. She started in the pews
• 31:33
  Speaker 2: and it was horrible green again. And it just didn't
• 31:38
  Speaker 2: feel right. We were stuck in a really, really horrible,
• 31:42
  Speaker 2: something doesn't feel right. I was speaking to the night nest.
• 31:44
  Speaker 2: Like you just, everyone's just family member, right? You just
• 31:47
  Speaker 2: start speaking to them. And I remember bumping into a
• 31:49
  Speaker 2: set of parents and, um, Their names were Lily and Jerome.
• 31:55
  Speaker 2: And I hope they don't mind me saying their names.
• 31:57
  Speaker 2: They're the gorgeous, gorgeous boy. And you, as you do,
• 32:01
  Speaker 2: when you go into kind of these mini kitchens of
• 32:03
  Speaker 2: you have a child, it's like we've been for, you know,
• 32:05
  Speaker 2: because you're there for months on end. At this point,
• 32:08
  Speaker 2: it really was months on end. And she had mentioned
• 32:12
  Speaker 2: our baby's got really rare disease. He's got something which
• 32:15
  Speaker 2: is called Hirschbronx. Only one in 5,000 babies get it. Never,
• 32:19
  Speaker 2: ever bloody heard of this stuff. And I was like, oh,
• 32:21
  Speaker 2: really interesting. And poor little Bubba was in for, I
• 32:27
  Speaker 2: think it was enterocolitis. And she was like, it's exhausting,
• 32:30
  Speaker 2: but he's brilliant. And he was. And when I mean
• 32:33
  Speaker 2: they're fantastic parents, they really are. So she had already
• 32:38
  Speaker 2: mentioned it. So I did a bit of a Google beforehand. Obviously,
• 32:40
  Speaker 2: anything related to the bowels, like, what is that? You know,
• 32:43
  Speaker 2: because I've got nothing else left to do apart from
• 32:46
  Speaker 2: just Google research. What is going on? And let's be honest.
• 32:51
  Speaker 2: ai started really getting into so it just spews out
• 32:54
  Speaker 2: bloody everything um we're even when we're speaking to the
• 32:59
  Speaker 2: doctors and the professors we're like oh why don't you
• 33:01
  Speaker 2: do a washout why don't you do this and it
• 33:03
  Speaker 2: was just i felt like ai was a bit of
• 33:06
  Speaker 2: our professor at one point because we were just going
• 33:08
  Speaker 2: by that and then when you speak to the doctors
• 33:11
  Speaker 2: and the surgeons and the professors they'd be like yeah
• 33:13
  Speaker 2: why don't we do that it's just like what i'm
• 33:17
  Speaker 2: I'm not medical here whatsoever. Like, what are we doing here?
• 33:21
  Speaker 2: But I think at some point they used to get
• 33:24
  Speaker 2: quite cheesier because we'd be giving them like, well, have
• 33:26
  Speaker 2: you considered this? And have you considered that? And, you know,
• 33:30
  Speaker 2: I'm sure at some point they were getting really pissed off. Like,
• 33:32
  Speaker 2: hold on, who are the doctors here? Also you. But
• 33:35
  Speaker 2: I think with families today, you're so equipped with information that, there's,
• 33:43
  Speaker 2: I don't think it's a bad thing that you go
• 33:45
  Speaker 2: in and ask questions. I think if you need to
• 33:47
  Speaker 2: be prepared, you do it as a parent. So although
• 33:50
  Speaker 2: every single surgeon must think, God, everyone thinks they could
• 33:53
  Speaker 2: do surgery these days. No, but we have read some
• 33:57
  Speaker 2: cases and actually the knowledge base is phenomenal out there. So, um,
• 34:02
  Speaker 2: it was very interesting that we were kind of telling
• 34:06
  Speaker 2: them about washouts. We should do this. And you know,
• 34:07
  Speaker 2: we were doing all these things anyway. Um, I remember
• 34:12
  Speaker 2: sat there with her, giving a cuddle and the prof
• 34:17
  Speaker 2: rocked up and she had an entourage with her, Tom.
• 34:21
  Speaker 2: And this must have been the second or third of September.
• 34:25
  Speaker 2: And they do anyway, they do these ward rounds, right?
• 34:27
  Speaker 2: So they do morning and they do the night and
• 34:29
  Speaker 2: they do just everything. Okay, great, great, great. Or they
• 34:31
  Speaker 2: will go into an in-depth kind of detail. And I'm knackered.
• 34:36
  Speaker 2: I want to go home. Baby's okay, but still we
• 34:40
  Speaker 2: can't figure out what the hell is going on. She
• 34:44
  Speaker 2: walks in and her words are bad news. It's Hirschsprungs.
• 34:52
  Speaker 2: I was like, okay. And she goes, we need to
• 34:57
  Speaker 2: go into surgery. We're going to go in this morning.
• 35:00
  Speaker 2: And again, you're like, fucking what? This is now, I
• 35:03
  Speaker 2: have four surgery in 66 days. of life. And it's
• 35:11
  Speaker 2: just thrown me off. How could we have got this
• 35:15
  Speaker 2: so wrong? What do you mean? We're going to have
• 35:18
  Speaker 2: to stoma a fashion again. Fashion a stoma. I don't
• 35:23
  Speaker 2: even can't remember how you bloody say it. Basically, give
• 35:26
  Speaker 2: it a stoma again. And I was like, what? We've
• 35:29
  Speaker 2: just closed it. And bless her, she's all, her whole
• 35:31
  Speaker 2: stomach has got all these scars on it. Obviously, from
• 35:34
  Speaker 2: the previous surgeries, from open to closure to Now you're
• 35:38
  Speaker 2: staying open. And obviously we had the emergency in between.
• 35:43
  Speaker 2: And I'm like, I can't understand it. And we need
• 35:46
  Speaker 2: to put a Hickman line in. Oh, my God. Like,
• 35:49
  Speaker 2: it just throws you completely because I'm like, you guys
• 35:54
  Speaker 2: are making this permanent now. Like, no. This is not
• 35:59
  Speaker 2: what this was supposed to be. So I was thrown massively, right?
• 36:03
  Speaker 2: I hated it. And I remember... They were saying, we'll
• 36:08
  Speaker 2: see you in an hour or so. We need to
• 36:10
  Speaker 2: get prepared. Said to the nurse, and again, it was
• 36:13
  Speaker 2: Jess at the time. They were like, Jess, stay here.
• 36:15
  Speaker 2: I obviously, biggest meltdown. Everyone's away from me because we
• 36:20
  Speaker 2: don't live local. So hubby's having to kind of balance
• 36:24
  Speaker 2: the kids. He's trying to do all this stuff. And
• 36:28
  Speaker 2: my mum's obviously there as well, just being amazing, looking
• 36:32
  Speaker 2: after the older rugrats. But Your mind's just like, I
• 36:36
  Speaker 2: can't believe we're doing this again. Anyway, it was done
• 36:39
  Speaker 2: from the rectum, the biopsy. That was the case. Then
• 36:43
  Speaker 2: call him, bawling my eyes out. You need to get here.
• 36:46
  Speaker 2: Then call us and say, really sorry, another emergency has
• 36:48
  Speaker 2: come up because they're balancing everything. She's safe for now.
• 36:53
  Speaker 2: But we're doing this. Then I remember the ward rounds
• 36:56
  Speaker 2: that evening was another doctor, Dr. Ahmed, I think it was.
• 37:02
  Speaker 2: Some of the surgical doctors are just phenomenal. And he
• 37:06
  Speaker 2: just sat there and goes, ask me any questions you've got.
• 37:08
  Speaker 2: And I just said, is she going to be okay? Yeah,
• 37:12
  Speaker 2: that's all I really care about. And let's be honest, Tom,
• 37:15
  Speaker 2: I'm sure every single parent that has been on this
• 37:18
  Speaker 2: podcast or listened has basically Googled life expectancy of a
• 37:21
  Speaker 2: Hirschsprung's kid. And you get some really dire answers when
• 37:26
  Speaker 2: you bloody go into that bloody Google search. And a
• 37:31
  Speaker 2: lot of it was just horrible. Oh, you can make
• 37:33
  Speaker 2: it for a few years. I was like, what? Just, again,
• 37:37
  Speaker 2: throwing me off completely. None of this made sense. And
• 37:41
  Speaker 2: I'll explain to you why. And I'll explain this to
• 37:43
  Speaker 2: everyone listening to this. How I sprung when I read
• 37:46
  Speaker 2: about it was, it's commonly found in boys. Well, no.
• 37:51
  Speaker 2: She's a girl. you typically have something else going on.
• 37:57
  Speaker 2: So there's a database, a genetics test that you can do.
• 38:01
  Speaker 2: So when they did the small bowel atresia one, they
• 38:03
  Speaker 2: took out a certain proportion just to use for medical evidence, right?
• 38:10
  Speaker 2: And they just want to make sure that everything's okay.
• 38:12
  Speaker 2: But they take that away and they do all this
• 38:14
  Speaker 2: DNA testing. Nothing had come up in the genetics test
• 38:18
  Speaker 2: so far. And we're two and a half months in. Nothing. Zero.
• 38:24
  Speaker 2: So I'm like, this is really confusing. I don't get it.
• 38:27
  Speaker 2: And then the only thing that I could say is
• 38:28
  Speaker 2: that she didn't pass meconium. They had to syringe it out.
• 38:32
  Speaker 2: So it wasn't like tick, tick, tick, gap, hair sprung.
• 38:36
  Speaker 2: This is what you could do. It just, it wasn't normal,
• 38:38
  Speaker 2: any of this. Anyway, he then said, he goes, I
• 38:42
  Speaker 2: will say one thing to you. And he said something
• 38:45
  Speaker 2: which was really dear to my heart. He goes, I
• 38:47
  Speaker 2: have a child who had medical issues. And I have
• 38:51
  Speaker 2: been in the same boat as you have. He goes,
• 38:55
  Speaker 2: everything is a patient's game. He goes, but trust that
• 38:59
  Speaker 2: she is going to be looked after. And, you know,
• 39:04
  Speaker 2: look at the day and age that we live in.
• 39:07
  Speaker 2: Look at all this stuff that goes on. And he goes,
• 39:10
  Speaker 2: I will say that my child that had, and I
• 39:12
  Speaker 2: think it was heart-related issues, had the biggest. He goes,
• 39:16
  Speaker 2: I completely feel you as a parent. He goes, but
• 39:19
  Speaker 2: he's absolutely fine now. Obviously he's an adult, right? But
• 39:23
  Speaker 2: at that point, he just gave me hope. And at
• 39:27
  Speaker 2: that point, that's all I needed and said to my husband.
• 39:29
  Speaker 2: And we were so grateful because it just felt that
• 39:33
  Speaker 2: instead of him just being there with his surgical hat on,
• 39:35
  Speaker 2: he just sat there and just said, as a parent,
• 39:39
  Speaker 2: just leave it. And again, I'm a person that prays
• 39:43
  Speaker 2: and all the rest of it. So he was just like,
• 39:45
  Speaker 2: just trust in God. Things will work out. Not giving
• 39:49
  Speaker 2: me any commitments because you're not allowed to do that. Anyway,
• 39:51
  Speaker 2: next day they came in again with that bloody sign declaration.
• 39:55
  Speaker 2: You've got to sign everything off. Fine. And they took
• 40:00
  Speaker 2: her in. And they did biopsy. So they actually did
• 40:03
  Speaker 2: the whole colon that they tested for hushpunks. And it
• 40:10
  Speaker 2: was just a waiting game. Hickman line was put in.
• 40:12
  Speaker 2: Hate it. But it had to be there to save
• 40:16
  Speaker 2: her life. Long line had completely... you know, lived out
• 40:20
  Speaker 2: its purpose. And she was there. And still, she was awesome, right?
• 40:25
  Speaker 2: She was still smiling, still laughing, doing everything that he
• 40:28
  Speaker 2: wanted to do. So post-surgery, we were waiting forever. We
• 40:32
  Speaker 2: had a Hirschsprung specialist there as well that came and
• 40:35
  Speaker 2: just said, you know, Hirschsprung is a very specialist. And,
• 40:39
  Speaker 2: you know, you've got to, I don't know why he
• 40:42
  Speaker 2: showed me, and he's such a lovely doctor, bless him.
• 40:44
  Speaker 2: I can't remember his name for the life of me,
• 40:45
  Speaker 2: but came and showed me like this key ring. He
• 40:47
  Speaker 2: was like, you If you want to be in the
• 40:49
  Speaker 2: society of Hirschsprung, so you've got to have this curing
• 40:51
  Speaker 2: and I'm in it. And, you know, we talk about
• 40:53
  Speaker 2: all these things all the time. That's like, gotcha. You know,
• 40:56
  Speaker 2: for me at this point, I'm like, I just want
• 40:58
  Speaker 2: to know if my baby's going to be okay. So
• 40:59
  Speaker 2: he was doing diagrams and all the rest of it.
• 41:01
  Speaker 2: I'm like, sure. But again, very grateful. Then it's back to, right,
• 41:08
  Speaker 2: let's start to just do PN and start doing a
• 41:10
  Speaker 2: few feeds here or there. And it's still the same,
• 41:13
  Speaker 2: you know, the NG tube is still there. And they're like,
• 41:16
  Speaker 2: do you know what? we need to get this out.
• 41:18
  Speaker 2: We need to start working on this. And things just
• 41:21
  Speaker 2: started working very slow. So we're now into September and
• 41:26
  Speaker 2: the professor finally gets the results. And that pathology, was
• 41:31
  Speaker 2: it pathology? Histology. I don't know. Basically the results of
• 41:35
  Speaker 2: all the biopsies that they did. They called us in
• 41:41
  Speaker 2: into a room and I remember sat there and like
• 41:45
  Speaker 2: she said, It just felt like somebody was feeling really
• 41:49
  Speaker 2: sorry for me at this point and just said, it's
• 41:52
  Speaker 2: the entire thing. It's the entire colon. And again, this
• 41:56
  Speaker 2: is really weird because girls don't typically have the entire
• 42:00
  Speaker 2: colon affected. It was so bloody rare. And then she
• 42:03
  Speaker 2: said a throwaway comment. She's one of four people in
• 42:08
  Speaker 2: the world with this combination that we're, and I have
• 42:11
  Speaker 2: to put a caveat to this, that we're aware of. Now,
• 42:15
  Speaker 2: I'm sure there's other people in the world that it's
• 42:17
  Speaker 2: just not medically, you know, there that they could be detailed.
• 42:20
  Speaker 2: But to be told that my baby has a combination
• 42:23
  Speaker 2: of small bowel atresia and total colonic, and it's extended
• 42:29
  Speaker 2: total colonic angliosis, Hirschsprung's disease. And I'll tell you why
• 42:34
  Speaker 2: it's the extended because the, I always get the word wrong, ilico, iliosal,
• 42:41
  Speaker 2: the valve basically. That kind of just goes from the
• 42:46
  Speaker 2: small bowel to the large bowel. The result had come
• 42:50
  Speaker 2: out as... What was the result? It was inconclusive. I
• 42:58
  Speaker 2: treat her stoma and, you know, whether she's had something
• 43:03
  Speaker 2: to drink, eat, whatever it is, maybe now, I treat
• 43:07
  Speaker 2: it as a leaky tap. So I reckon... that it
• 43:15
  Speaker 2: doesn't have the ganglionic cells, just on the valve. And obviously,
• 43:18
  Speaker 2: it's a massive difference. Anyway, so now my baby has
• 43:22
  Speaker 2: small bowel atresia, and she has total colonic Hirschsprung's disease.
• 43:28
  Speaker 2: And that is a massive whirlwind of a story. I'm
• 43:31
  Speaker 2: really sorry that I've just really gone into detail, but
• 43:33
  Speaker 2: I just feel like you've got to go through the experience.
• 43:37
  Speaker 2: And we ended up having, handed over to the gastroenterology team,
• 43:43
  Speaker 2: And they were like, they'll look after you from now.
• 43:46
  Speaker 2: So we then move on to the gastroenterology team. They
• 43:50
  Speaker 2: then started things with loperamide every couple of hours to
• 43:53
  Speaker 2: kind of really slow the gut down. Um, she has
• 43:56
  Speaker 2: an ileostomy now, obviously. Um, and you know, I, I
• 44:01
  Speaker 2: don't know if, you know, your views, I'm sure they do,
• 44:04
  Speaker 2: but the difference between ileostomy versus a colostomy is colostomy
• 44:07
  Speaker 2: comes from the large bowel and it still can come
• 44:10
  Speaker 2: out like poop because That large bowel essentially takes in
• 44:13
  Speaker 2: all the liquids. And that's why it comes out in
• 44:16
  Speaker 2: that turd-like state. Whereas the ileostomy is whatever you put
• 44:21
  Speaker 2: in comes back out. And it's kind of just water
• 44:25
  Speaker 2: because you're not slowing it down, right? That's the issue.
• 44:27
  Speaker 2: And that's why the loperamide is used to slow these
• 44:29
  Speaker 2: things down. She was used things like, so her liver
• 44:33
  Speaker 2: is always, because she's been on concentrated parental nutrition for
• 44:37
  Speaker 2: so long, there's always that risk that that could be impacted.
• 44:39
  Speaker 2: So she's on this thing called asloxic acid. She had
• 44:42
  Speaker 2: kind of stomach acids, which, I mean, grown adults, I
• 44:47
  Speaker 2: remember a lot of like my parents, I've had it
• 44:49
  Speaker 2: in the past, omeprazole, she was given a complete cocktail
• 44:53
  Speaker 2: of drugs. Apart from the omeprazole, which we've dropped, she's
• 44:56
  Speaker 2: still on those drugs today. She's now 14 months during
• 45:02
  Speaker 2: that time. So I stayed in hospital with her for
• 45:05
  Speaker 2: four and a half months in total. So we were
• 45:08
  Speaker 2: Discharged on the November the 4th after going in on
• 45:11
  Speaker 2: the 29th of June, which is insane, 128 nights. I
• 45:15
  Speaker 2: was told you shouldn't count, but when you're there for
• 45:17
  Speaker 2: that long, it's surreal. I would love to say that
• 45:20
  Speaker 2: I spent a lot of that time just watching a series,
• 45:23
  Speaker 2: but as a parent, you're just, what the actual... is
• 45:27
  Speaker 2: going on right that entire time and I just couldn't
• 45:29
  Speaker 2: settle I was looking for solutions all the time I
• 45:32
  Speaker 2: was finding out all the doctors the professor consultants globally
• 45:35
  Speaker 2: I was reaching out to anyone and everyone that would
• 45:38
  Speaker 2: just listen to our story um I was then taught
• 45:41
  Speaker 2: that actually if you guys want to go home you
• 45:43
  Speaker 2: can um we need to get her down to 12
• 45:46
  Speaker 2: hours a day on total nutritional nutrition so um I
• 45:50
  Speaker 2: was like fine I was working my way we were
• 45:53
  Speaker 2: checking sugars all the time the calcium My poor baby's
• 45:56
  Speaker 2: feet when she didn't have the Hickman line was just
• 45:59
  Speaker 2: forever being coped so that they could just check all
• 46:02
  Speaker 2: her bloods. It was a really stressful time. Like I said, nurses,
• 46:10
  Speaker 2: I love you because you're phenomenal. Doctors, you saved my
• 46:13
  Speaker 2: baby's life, but I just want a solution. So after
• 46:17
  Speaker 2: that long, we came home. She's on 12 hours a
• 46:19
  Speaker 2: day of TPN. She still is. She's putting on weight.
• 46:23
  Speaker 2: She's 14 months. She's another right now. I go see
• 46:30
  Speaker 2: the gastroenterology team now every three to four months. She's eating.
• 46:35
  Speaker 2: So again, something that Hirschsprung's babies apparently don't do. And
• 46:39
  Speaker 2: she bloody eats everything. This kid, you know, yes, it
• 46:41
  Speaker 2: comes out. And, you know, let's be honest, the absorption's
• 46:45
  Speaker 2: not greatly there, but she's putting on weight. It's something's working.
• 46:51
  Speaker 2: And I've just got to trust the system. Am I
• 46:53
  Speaker 2: Googling every single day? Fuck yes, I am. Doing it
• 46:57
  Speaker 2: even to the point, I was doing it last night
• 46:59
  Speaker 2: and my husband was as well. So because we've got
• 47:02
  Speaker 2: the combo, Tom, we're in a situation where we need
• 47:05
  Speaker 2: to make something work. One thing actually, what's really interesting
• 47:08
  Speaker 2: is that we actually never took the large bowel out, right?
• 47:11
  Speaker 2: So we've got essentially a megaconin still there. So that
• 47:14
  Speaker 2: was never removed. And I think that's really important because
• 47:18
  Speaker 2: I would pray at some point, that we'd be able
• 47:23
  Speaker 2: to do some form of, I don't know, a miracle
• 47:28
  Speaker 2: cure of a stem cell, of a neurosphere, of some
• 47:32
  Speaker 2: sort of therapeutic solution that would allow for us to
• 47:38
  Speaker 2: use the large bowel in some capacity. I do washouts
• 47:43
  Speaker 2: every three to four weeks. So although it's not being used,
• 47:47
  Speaker 2: we still have a mucous fistula and we still have,
• 47:49
  Speaker 2: you know, a stoma. I still do the washout, so
• 47:52
  Speaker 2: it still comes out. And out of a bottom, you
• 47:54
  Speaker 2: still get kind of mucus plugs come out as well, which, again,
• 47:58
  Speaker 2: is quite common. But, yeah, I just want to make
• 48:01
  Speaker 2: sure that if there is a potential to use it,
• 48:04
  Speaker 2: why not? It's clear. It's great. You know, Alison, who
• 48:10
  Speaker 2: does the washouts every few weeks, phenomenal lady, just has
• 48:13
  Speaker 2: patients often saying, we do it. We're just trying our
• 48:17
  Speaker 2: best to see what options we have. We have a
• 48:21
  Speaker 2: wonderful nurse that comes to us because she's on seven days.
• 48:25
  Speaker 2: We're going through kind of the TPN stuff. We have
• 48:27
  Speaker 2: a nurse that comes twice a week, Raluca, who's love
• 48:31
  Speaker 2: her again. Everyone just bloody comes past the family, Tom.
• 48:34
  Speaker 2: It's just one of those things that I was breaking it.
• 48:38
  Speaker 2: One thing you can't do with a Hickman is that
• 48:41
  Speaker 2: you cannot get it wet. obvious reasons. So bath times
• 48:44
  Speaker 2: is very, very tricky. We don't do it daily. We
• 48:48
  Speaker 2: have to do it, you know, two to three times
• 48:49
  Speaker 2: a week where we can. And the stoma, as you know,
• 48:53
  Speaker 2: you've heard all these stories that stoma doesn't come in
• 48:56
  Speaker 2: kind of toddler type sizes. It comes in baby form,
• 49:01
  Speaker 2: which is kind of newbornish and then adult. So my
• 49:03
  Speaker 2: baby's walking around with an adult stoma bag and we've
• 49:07
  Speaker 2: got something that works now. We've got the combo. She
• 49:09
  Speaker 2: obviously has issues with it from time to time where
• 49:13
  Speaker 2: she'll have a rash. Just remember guys, ileostomy also means
• 49:16
  Speaker 2: that when it does flood, it's like acid on the skin,
• 49:19
  Speaker 2: which isn't ideal for any baby. Do I want this
• 49:22
  Speaker 2: for my baby? Absolutely not. Is she going to make it?
• 49:25
  Speaker 2: 100 fucking percent. We've just got to get through it. Like,
• 49:31
  Speaker 2: I think all the parents and everyone that's come on
• 49:33
  Speaker 2: to this, Tom, you've been there, done that, right? You're
• 49:36
  Speaker 2: still living a quality of life. And I think That's
• 49:39
  Speaker 2: the most important message that I just want to give
• 49:42
  Speaker 2: is she's laughing. She is hilarious. She's bloody doing Peppa
• 49:47
  Speaker 2: Pig noises, which really pisses me off right now. But
• 49:49
  Speaker 2: that for her is her thing. But she's doing all the,
• 49:53
  Speaker 2: what's that? And wow. She's awesome. And she is just
• 49:57
  Speaker 2: such a brilliant, brilliant member of our family. It's just, yeah,
• 50:02
  Speaker 2: she's awesome. And that's one thing I just want to
• 50:04
  Speaker 2: say to everyone. Yes, it's shit. The irony of using
• 50:08
  Speaker 2: that word in this is awful, but here we go.
• 50:11
  Speaker 2: But we'll get there. My first priority is let's get
• 50:16
  Speaker 2: that Hickman line out. And the Stonewall, we'll see. You know,
• 50:19
  Speaker 2: if a reversal is to come in the future, so
• 50:22
  Speaker 2: be it. But right now, as soon as that's out
• 50:25
  Speaker 2: and she's able to do this on her own, I
• 50:28
  Speaker 2: think we're going to be all right. So that's my
• 50:32
  Speaker 2: story in a nutshell after about 50 minutes. So I'm
• 50:34
  Speaker 2: really sorry about that.
• 50:36
  Speaker 1: No, that is one heck of a story. I mean,
• 50:40
  Speaker 1: like you said, I think when we spoke before, we
• 50:45
  Speaker 1: sort of worked out one in four in the world,
• 50:48
  Speaker 1: which kind of works out, let's say there's about eight
• 50:51
  Speaker 1: billion in the world.
• 50:52
  Speaker 2: One in two billion.
• 50:53
  Speaker 1: One in two billion. I mean, that is, that's really
• 50:59
  Speaker 1: hard to get your head around. Have you got your
• 51:00
  Speaker 1: head around that at all?
• 51:02
  Speaker 2: No, no. And I think that's why I'm just really
• 51:05
  Speaker 2: precious about it as well. That, you know, I'd love
• 51:07
  Speaker 2: to say that I've met all my family now and
• 51:09
  Speaker 2: all my friends. And no, because you become so precious
• 51:13
  Speaker 2: about these things. And I think that I've just kept
• 51:16
  Speaker 2: her at home in Cottonwall. And it's only literally in
• 51:19
  Speaker 2: the last couple of months that I'm like, Kieran, put
• 51:23
  Speaker 2: your bloody big pants on, right? Big girl pants. She's
• 51:26
  Speaker 2: going to make it. And, you know, you've got to
• 51:29
  Speaker 2: be stronger in this. I was a blubbing mess. If
• 51:31
  Speaker 2: we were to do this a few months back, I
• 51:33
  Speaker 2: remember when the parents that had rocked up, I'm tempted
• 51:36
  Speaker 2: to say it was Georgina that had done it. And
• 51:39
  Speaker 2: she was five months into kind of that process. I
• 51:41
  Speaker 2: was like, shit, I couldn't even have a conversation at
• 51:45
  Speaker 2: that point. Like kudos to her for doing it. You've
• 51:47
  Speaker 2: got some amazing parents, amazing people that do this. And
• 51:51
  Speaker 2: you know what? Hats off to every single one of
• 51:54
  Speaker 2: your guests. And yourself, Tom, for doing this, because I
• 51:57
  Speaker 2: don't do social media. I Google the hell out of everything.
• 52:00
  Speaker 2: And that's actually not necessarily a good thing. But I
• 52:03
  Speaker 2: just wanted to kind of come on here because I've, again,
• 52:06
  Speaker 2: it was Lillian Jerome that had mentioned this podcast. So
• 52:09
  Speaker 2: I've sat in hospital listening to you. But it's just
• 52:15
  Speaker 2: important to know that although it's technically classed as intestinal failure,
• 52:20
  Speaker 2: I bloody hate that term. And she's essentially got nearly
• 52:24
  Speaker 2: the full whack of it. actually, guys, she's awesome. I
• 52:28
  Speaker 2: was reading about another kid yesterday that was left with
• 52:32
  Speaker 2: nine centimeters of only short bowel, but still is now
• 52:37
  Speaker 2: using something called a GLP-2 to do glottide. And actually, okay.
• 52:44
  Speaker 2: You read stories, guys. There is things going on in
• 52:48
  Speaker 2: the world, which is phenomenal. But I read that yesterday.
• 52:51
  Speaker 2: I was like, nine centimeters. How the hell did that
• 52:54
  Speaker 2: work out? But Yeah, absolutely.
• 52:59
  Speaker 1: And I think that's testament to a lot of the
• 53:03
  Speaker 1: sort of scientific research that goes on and a lot
• 53:05
  Speaker 1: of the stuff that happens there. But like you said,
• 53:09
  Speaker 1: people who come on this podcast after six months, you're
• 53:13
  Speaker 1: only on for, well, less than two years coming on
• 53:16
  Speaker 1: the podcast. I took 30 years to come on and
• 53:19
  Speaker 1: tell my story. So anybody who comes on a lot
• 53:22
  Speaker 1: sooner than me a lot of you.
• 53:25
  Speaker 2: All of it seriously i can't say it enough that
• 53:29
  Speaker 2: man you guys are my heroes fact because at some
• 53:32
  Speaker 2: point my baby's gonna grow and she'll be in the
• 53:34
  Speaker 2: same situation you guys and she's rocking and rolling that
• 53:37
  Speaker 2: you know i'm gonna do everything within my power to
• 53:40
  Speaker 2: make sure that we find something and what um they're
• 53:44
  Speaker 2: doing at you know that her sprung's day that we
• 53:46
  Speaker 2: attended the things are moving all good things you're talking
• 53:51
  Speaker 2: about all these things that connor and his squad are doing. And, um,
• 53:56
  Speaker 2: it just, just amazing. Everyone just, I'm so grateful for
• 54:01
  Speaker 2: everything that happens, but it, I think what's really surreal
• 54:04
  Speaker 2: is that the phases are milestones in life. And that's
• 54:08
  Speaker 2: one thing that we spoke about, Tom, was there was
• 54:11
  Speaker 2: the babies, obviously, you know, I've still considered Cara as
• 54:14
  Speaker 2: part of that for sure. Then you go on to
• 54:16
  Speaker 2: the preschoolers and you get the school kids, like the
• 54:19
  Speaker 2: Jaspers of the world, who was, I remember screaming at
• 54:22
  Speaker 2: him like, you're my hero, Jasper. I love it. But
• 54:25
  Speaker 2: he and Hannah have been on their journey. And then
• 54:28
  Speaker 2: you get to the adults and I met yourself and
• 54:31
  Speaker 2: a few others. And what was really interesting was just like,
• 54:34
  Speaker 2: what happens in the next generation? You know, does this happen?
• 54:37
  Speaker 2: So all this DNA testing and everything that we're doing,
• 54:40
  Speaker 2: it's just, no, we want to stop this and we
• 54:43
  Speaker 2: want to make sure that something else works. And, you know,
• 54:46
  Speaker 2: the future, the future is bright, my friend. Right.
• 54:50
  Speaker 1: Absolutely. Absolutely. And the more stories we can share, the
• 54:54
  Speaker 1: more Hirschsprung's days that we can have, hopefully we'll have,
• 54:58
  Speaker 1: you know, at least one a year, whether that's in Liverpool,
• 55:02
  Speaker 1: like it was a couple of years ago, or the
• 55:04
  Speaker 1: one in London that was, what was that a few
• 55:07
  Speaker 1: months ago, July, 4th of July. So yeah, that was,
• 55:11
  Speaker 1: that was about two months ago, because we sit here
• 55:13
  Speaker 1: and we're two and a half months ago.
• 55:14
  Speaker 2: Yeah.
• 55:15
  Speaker 1: That was amazing. And just to see, just to sit there,
• 55:19
  Speaker 1: I mean, as someone like me who's absorbed in it
• 55:22
  Speaker 1: all the time, to sit there and think, oh, this
• 55:25
  Speaker 1: is going on and I didn't know about that and
• 55:27
  Speaker 1: I didn't know that happened and this happened, you know,
• 55:31
  Speaker 1: it was absolutely amazing. So I'm really looking forward to
• 55:35
  Speaker 1: having more days like that. Oh, 100%.
• 55:38
  Speaker 2: I think knowledge is key. And what was really lovely
• 55:42
  Speaker 2: is that You had the Goshers of the world. You
• 55:45
  Speaker 2: had the Old Days of the world. You had Southampton.
• 55:47
  Speaker 2: You had all these different newness. And let's be honest,
• 55:49
  Speaker 2: whenever you're part of the system, you genuinely think that
• 55:53
  Speaker 2: nobody's bloody talking to anyone. But actually, in fact, they are.
• 55:56
  Speaker 2: And I would love to say that they're doing this. Look,
• 55:59
  Speaker 2: for me, I'll be really honest with you. It's a
• 56:02
  Speaker 2: patience game for me. And that's the one thing that
• 56:06
  Speaker 2: I'm just sat there going, be patient, Kieran. Something's going
• 56:08
  Speaker 2: to happen. Be patient, be patient, be patient. So I mean,
• 56:12
  Speaker 2: I really just need to listen to those words. I
• 56:14
  Speaker 2: can't just bloody say it, but, um, I need to
• 56:17
  Speaker 2: actually do it. Um, because something will happen, but in
• 56:20
  Speaker 2: the meantime, she's rocking and rolling. Do I wish that
• 56:23
  Speaker 2: she didn't have any of this? A hundred percent. I
• 56:25
  Speaker 2: say this to, you know, everyone that I meet, but
• 56:28
  Speaker 2: I've got to believe that she's going to be absolutely
• 56:30
  Speaker 2: just fine. So yeah, next steps Hickman out would be the,
• 56:34
  Speaker 2: the dream. Um, but right now we're just working on
• 56:37
  Speaker 2: the absorption. She's eating everything. Um, Yeah, I think the
• 56:42
  Speaker 2: one thing that we learn, and Tom, with yourself, there
• 56:43
  Speaker 2: are certain kind of food groups that just don't sit
• 56:46
  Speaker 2: well with you. There are certain things that, you know,
• 56:48
  Speaker 2: that do, but it's something that we've just got to
• 56:52
  Speaker 2: go with, right? I think just because she's got the
• 56:55
  Speaker 2: total colonic, I think there's certain things that I have
• 56:58
  Speaker 2: to think extra about of if the PN does come off,
• 57:02
  Speaker 2: which it will do, and the Hickman's out, how do
• 57:05
  Speaker 2: we keep her hydrated? Because that literally is nearly, you know,
• 57:08
  Speaker 2: 900 mil that she's getting overnight, and though she's drinking
• 57:11
  Speaker 2: water throughout the day, is that going to be enough?
• 57:14
  Speaker 2: Because just remember, it's ileostomy. It doesn't go to the
• 57:17
  Speaker 2: large bowel and the body sucks it up. So all
• 57:19
  Speaker 2: these organs have a worthwhile function that we need to
• 57:22
  Speaker 2: obviously go through. But I could waffle on for days, Tom,
• 57:25
  Speaker 2: as you know, and I'm going to stop right there.
• 57:28
  Speaker 1: No, but I really, really appreciate it. Thank you so much.
• 57:31
  Speaker 1: It's been one heck of a story and it's still
• 57:34
  Speaker 1: got a long way to go. So if you ever
• 57:37
  Speaker 1: want to come back at any time, give us an update.
• 57:40
  Speaker 1: I would be delighted, absolutely.
• 57:43
  Speaker 2: Delighted to have you back.
• 57:44
  Speaker 1: Thank you so, so much for coming on.
• 57:46
  Speaker 2: I'm so grateful. Thank you so much for having.
• 57:50
  Speaker 1: Me. Thank you for listening and being part of this
• 57:53
  Speaker 1: growing community. If you have enjoyed the episode, don't forget
• 57:56
  Speaker 1: to subscribe, leave a review, and share it with someone
• 57:59
  Speaker 1: who might need it. You can connect with us on
• 58:02
  Speaker 1: social media via Instagram, Facebook, and TikTok under the name
• 58:06
  Speaker 1: Tom's Her Sprungs Podcast. See you next week. Thank you.