Latest / Tom's Hirschsprung's Podcast / Episode 108 - Ed Leach and Laura Wilson (Part 2)

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Episode 108 - Ed Leach and Laura Wilson (Part 2) · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprng's 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.
0:44
Speaker 2: She was under the gastro team of Elena at this time,
0:47
Speaker 2: and she was under the team and and there a
0:53
Speaker 2: fantastic group of doctors. We had this one doctor, I
1:02
Speaker 2: don't know what you're saying that do you think?
1:04
Speaker 3: Next day, since has just joined us for the audio listeners,
1:12
Speaker 3: welcome ability, he wanted to see your fee again.
1:15
Speaker 4: I don't know, I don't know what that is.
1:18
Speaker 5: Oh wait, oh oh right, I knew it.
1:23
Speaker 4: I'm going to mute. It's going to interrupt you.
1:27
Speaker 2: She was under the doctor called Mohammad there and this
1:33
Speaker 2: is how you knew, you know, the long term for
1:36
Speaker 2: her was hospital. It was he used to come in
1:44
Speaker 2: and it has our little princess today and you're just
1:47
Speaker 2: looking and that that that sense of you're there for her.
1:56
Speaker 2: It's sought. It wall okay, you become a part of
2:01
Speaker 2: a family in a way, you know, and he he
2:08
Speaker 2: step by step, step by step step, and you're trying
2:11
Speaker 2: and explain it, and he'd explained it to me, and
2:15
Speaker 2: then I'd break it down for law because all the
2:20
Speaker 2: terminology they use, let's be fair, it's it's I mean,
2:25
Speaker 2: I've got quite in mind that works like that, you know,
2:28
Speaker 2: because of my job, et cetera. But then trying to
2:34
Speaker 2: break that down for others, I think that's the hardest part,
2:38
Speaker 2: because people are under an impression around you that, oh,
2:44
Speaker 2: should be all right, should be fine, uh, and trying
2:49
Speaker 2: to explain there are so many different factors to what's
2:54
Speaker 2: going on with her. It will it affects everyone in
2:59
Speaker 2: a different way. And I think with the hirst ones,
3:03
Speaker 2: where there are so many different types and so many
3:07
Speaker 2: different parts of the intestine effects, everyone is so different.
3:16
Speaker 2: And it's amazing, it's absolutely amazing, how how how such
3:24
Speaker 2: a disease can overpower your life but be rewarded And
3:30
Speaker 2: this does sound really strange but rewarding at the same time.
3:35
Speaker 2: Do you see what I mean? Like it fans your mind,
3:42
Speaker 2: but then expands to other people's lives and how they
3:47
Speaker 2: cope with things, you know. I just yeah, that.
3:54
Speaker 4: Seems really perspective, doesn't it.
3:56
Speaker 2: Yeah, that is not all doing with gloom, it's not.
4:01
Speaker 2: But I think you also have to accept and it
4:05
Speaker 2: all depends on the on the circumstance of each different case.
4:10
Speaker 2: But I think it puts into respective and you you
4:15
Speaker 2: cherish your moments, but deep down you know where things
4:22
Speaker 2: will lead to, you know, because it's not necessarily the
4:28
Speaker 2: hersprungs that does it. It's the other conditions and what
4:33
Speaker 2: the body goes through that affects the person. And I
4:38
Speaker 2: think that's quite a main point that to accept is
4:42
Speaker 2: quite hard because where the hersprungs takes over the intestine,
4:49
Speaker 2: you've got to have something to replace the nutritional value
4:51
Speaker 2: where it's sort of taken over, if you, if you,
4:55
Speaker 2: if you see what I mean. And that's that's that's
5:00
Speaker 2: hard part. Where it takes time to adjust too. And
5:08
Speaker 2: after that last procedure she had and they got the
5:14
Speaker 2: transition zoned refashioned and Sohma took out the appendix like
5:18
Speaker 2: I know now from the lad's procedure and sort of
5:21
Speaker 2: tided it all up. It was then a point from
5:27
Speaker 2: getting out of hospital at that moment, we was in
5:31
Speaker 2: Evelina for well, we left there in end of March,
5:36
Speaker 2: wasn't it It was, wasn't it? Yeah, so end of
5:40
Speaker 2: March twenty four. She'd gone in in July twenty four,
5:45
Speaker 2: So from July twenty four, I think it's nine and
5:47
Speaker 2: a bit months she was in.
5:51
Speaker 4: What see.
5:54
Speaker 2: Yeah, yeah, sorry, sorry, home.
5:58
Speaker 4: The second of March t T three.
6:01
Speaker 2: Yeah, that's correct. Sorry, so it was July twenty two.
6:05
Speaker 2: Was born around March twenty three and that whole okay, baby, Sorry,
6:16
Speaker 2: she's the boss.
6:16
Speaker 4: In this house.
6:18
Speaker 2: There you go. That' be better, okay, So that nine
6:22
Speaker 2: and a half months, and when you prepare for getting
6:29
Speaker 2: a child home, knowing that she she's got the long
6:37
Speaker 2: segment of her Spring's disease, she's got to TV independent,
6:42
Speaker 2: she's fed through her patube, All medications go through the
6:47
Speaker 2: peg tube. The adjustment from hospital life to whole life
6:59
Speaker 2: is massive, and you're always taught this is your new normal,
7:05
Speaker 2: this is your new normal, and that please, yes, it
7:10
Speaker 2: is my new normal. But you don't need to keep
7:12
Speaker 2: telling me that. You know, we had to be trained
7:20
Speaker 2: for a TPM because obviously where the hursts was so
7:26
Speaker 2: far up in her intestine. She wasn't getting that nutrition value,
7:30
Speaker 2: so we had to train before even leaving the hospital.
7:35
Speaker 2: But this is another baffling one. When they train you,
7:40
Speaker 2: they don't give you no guides on how to do it.
7:45
Speaker 2: There's no step by step guide on connection disconnection anything.
7:53
Speaker 2: And it's also run by different hospitals to the hospitalal
7:55
Speaker 2: you're in, so they have to come from kings over
8:05
Speaker 2: which one blew it, which one was up Bobby, it's
8:10
Speaker 2: not on that.
8:11
Speaker 6: Adding on to that, we were only the second, so
8:13
Speaker 6: they got the King's team to come over to us
8:15
Speaker 6: in Evelina, who was only the second people they'd ever
8:18
Speaker 6: done that for. Wow.
8:21
Speaker 4: Sorry, sorry kids.
8:25
Speaker 5: No, that's absolutely incredible, I mean from what the heck
8:30
Speaker 5: of a story so far. But I mean that is
8:33
Speaker 5: there's a couple of things that you both said that
8:37
Speaker 5: that I've just sort of picked up on. And one
8:39
Speaker 5: is it's something I'll always advocate for on here and everywhere.
8:43
Speaker 5: But that is parental instincts, I mean, you know, and
8:48
Speaker 5: it's it's something where you know something is an issue,
8:53
Speaker 5: you know something's not right, but you don't maybe know exactly,
8:58
Speaker 5: but you know something isn't right. And I think it's
9:02
Speaker 5: that I will keep banging this home until whenever. But
9:07
Speaker 5: listening to parents who say I know something's wrong, but
9:11
Speaker 5: I don't quite know, instead of just dismissing and going, well,
9:14
Speaker 5: you're not a doctor, you're not a nurse, you don't
9:16
Speaker 5: know what you're talking about. I think that listening to
9:19
Speaker 5: parents and parental instincts is it's paramount. It's so vital,
9:25
Speaker 5: absolutely absolutely, and I think not a lot of people do.
9:31
Speaker 5: But you know you're child best, I.
9:33
Speaker 6: Will say, with our experience, and I know because I've
9:38
Speaker 6: spoken to her about this before.
9:39
Speaker 4: I hope this is the experience that other people have,
9:42
Speaker 4: but the dads aren't usually listen to.
9:45
Speaker 6: In our experience, he has to really voice his opinion
9:50
Speaker 6: multiple times and they will just still look at me.
9:54
Speaker 6: But it's only recently that it has been the other
9:57
Speaker 6: way round, because he's like, well, no, I'm getting my
9:59
Speaker 6: work in, which so he should, because they shouldn't just
10:04
Speaker 6: listen to one pairent just because just because I'm the mom,
10:06
Speaker 6: I shouldn't be the one who is the only one
10:08
Speaker 6: to speak. He's got a lot to say and a
10:10
Speaker 6: little questions to ask, and he was dismissed a lot.
10:14
Speaker 6: When Ledy was first born, alone to the point where
10:17
Speaker 6: I did get infuriated for both of us.
10:22
Speaker 4: But yeah, I don't.
10:23
Speaker 6: I hope that's not the case for a lot of people,
10:25
Speaker 6: but I feel maybe, unfortunately it could be.
10:29
Speaker 2: I think it's I think it's because obviously I know
10:35
Speaker 2: it's a lot of strain on a mother. I get that.
10:38
Speaker 2: I get that. But there's times where she couldn't votch
10:43
Speaker 2: it after the having having led and she she was
10:50
Speaker 2: dosed up on her pay medes and so on. You're
10:54
Speaker 2: telling her and you're addressing her, but you know she's
10:58
Speaker 2: not taken in exactly done that. You know that she's
11:02
Speaker 2: not taking that in. So why would you do that?
11:06
Speaker 6: You know?
11:07
Speaker 2: And there would be signs where all the way through
11:11
Speaker 2: where they would address me for Laura, They'll be talking
11:16
Speaker 2: to Laura but talking to me. They're looking at Laura
11:18
Speaker 2: but talking to me. Oh, it's incredible, it's incredible. But
11:24
Speaker 2: I think you're you're you're on point with that a
11:28
Speaker 2: parents instinct. It's that intuition where you know this is
11:36
Speaker 2: not right, and it's an I am such a strong
11:42
Speaker 2: advocate for vocalizing that there's a ways to do it. Yes,
11:45
Speaker 2: there is, will know that and trust me. I've seen
11:51
Speaker 2: people do it in the wrong way and then people go,
11:55
Speaker 2: how did you get your point across there? And you're like,
11:59
Speaker 2: it's the way you say, it's the way you address it.
12:04
Speaker 2: And there was a lot of times through our experience
12:08
Speaker 2: with lady and the Hersbrungs and what complications it brought,
12:14
Speaker 2: that are vocalized, and I won the battles with my words.
12:20
Speaker 5: M should have.
12:23
Speaker 2: No exactly they go, and I shouldn't have to sit
12:27
Speaker 2: there and go, well, how am I going to do
12:29
Speaker 2: this and get my point across and vocal because on
12:33
Speaker 2: the voice for her, I'm the voice for my child now,
12:39
Speaker 2: so she can't speak, Who's going to get that point
12:43
Speaker 2: across me? There's the way you have to do it.
12:47
Speaker 2: There was a points where she was in the hospital
12:50
Speaker 2: and so obviously where her condition with the Hersebungs means
12:56
Speaker 2: she's got to have the TPN no matter what. That
13:00
Speaker 2: also brings about the issue of sepsis line sepsis. Elidis
13:08
Speaker 2: had that three times in hospital. The last time she
13:15
Speaker 2: had it there was a certain bacterial growth called Clytiella pneumonia,
13:24
Speaker 2: and that's the last time she had this line sepsis
13:28
Speaker 2: in the hospital. And the antibiotics they gave her weren't
13:32
Speaker 2: working because she'd obviously grown antibodies to the two previous ones.
13:39
Speaker 2: So the hats got to the it's the Pennam family.
13:43
Speaker 2: So the marripenum is really strong antibiotics given ivy to
13:51
Speaker 2: to get rid of the sepsis. But they have to
13:54
Speaker 2: go back through generations of that antibiotics to get one
13:59
Speaker 2: that works for her. And we weren't told at the time,
14:03
Speaker 2: but we saw deterioration and led and parents initiative. You know,
14:11
Speaker 2: there's something going on with your child and you're looking
14:14
Speaker 2: and thinking she's not right. Then it comes back to
14:18
Speaker 2: the RP levels upraised, massive and so forth. But it
14:25
Speaker 2: was because we addressed it that was brought you see
14:29
Speaker 2: what I mean. And it shouldn't be like that.
14:33
Speaker 4: She had.
14:36
Speaker 2: The TPN that gets transported into the hospital. We used
14:39
Speaker 2: to another family above in another ward and this to
14:47
Speaker 2: make you laugh now, So that first week when the
14:51
Speaker 2: pump was fallen, yeah, we ended up on the same
14:56
Speaker 2: ward as this young person that we knew who had
15:01
Speaker 2: the same bacteria growth within the CPN. Right, So because
15:06
Speaker 2: we spoke up about the pump and there was numerous
15:11
Speaker 2: meetings about this accident. Bear in mind, and I said,
15:15
Speaker 2: that's on you. You know, I understand it's busy. I
15:20
Speaker 2: understand that, but that should never have happened to her.
15:24
Speaker 2: That's where the issue is. That should never have happened
15:26
Speaker 2: to that young girl there, you know. And we ended
15:34
Speaker 2: up getting moved from the ward where we had grown
15:39
Speaker 2: into a family. We've been on it for six months,
15:45
Speaker 2: six a half months, and within twelve hours we had
15:49
Speaker 2: moved upstairs of that meeting that we had, that second
15:53
Speaker 2: meeting we had, we've moved up to a different ward.
15:57
Speaker 2: Bear in mind, this ward above. We had no positive
16:01
Speaker 2: words to say about it. And and this is where
16:07
Speaker 2: you become the voice of your child. I got hold
16:15
Speaker 2: of the main man of belina Ian apps. This was
16:22
Speaker 2: I thought to myself, there's a couple of ways I
16:26
Speaker 2: can go here. I'm gonna call him. And now to
16:31
Speaker 2: this day, hombly, i've still got the voice Mark. I
16:34
Speaker 2: called him at midnight. I'm up. I know it's really bad.
16:38
Speaker 2: I'm up. I'm in your hospital. I'm being treated, my
16:43
Speaker 2: daughters being treated in a way. That's the responsibility falls
16:47
Speaker 2: on you, not me, not her. Why should she if
16:50
Speaker 2: you punished for that you know, he didn't answer, left
16:57
Speaker 2: him with voice mouth. He called back the next day
17:02
Speaker 2: and within twenty four hours where's moved back down. But
17:09
Speaker 2: that just tells you why, why should something like that
17:14
Speaker 2: have to happen and vocalize for your child who's world
17:19
Speaker 2: has been turned upside down by this unknown identity that
17:23
Speaker 2: you know prior to this, Yes, we knew it run
17:26
Speaker 2: in the family, but we had no sort of knowledge firsthand,
17:35
Speaker 2: you know. And the two previous forms within laura family
17:41
Speaker 2: are nowhere near like this, right right, And I'll let
17:46
Speaker 2: Laura explain the levels that it goes in with her family. Yeah,
17:55
Speaker 2: lor sort of explained to Tom.
17:58
Speaker 6: Yeah, so my auntie on my mum's sides and my
18:01
Speaker 6: mum's sister they had her sprums in seventies. Sorry, obviously
18:08
Speaker 6: he wants to his wording as well. Uh, and they
18:14
Speaker 6: didn't know what Woody House, France was then to what
18:17
Speaker 6: I've been sold and sorry, and they they don't have
18:26
Speaker 6: a procedure on her. I'm not quite sure whether it's
18:29
Speaker 6: to bring a stone er out or not. I don't
18:32
Speaker 6: know the full details. And unfortunately my grandparents aren't around
18:36
Speaker 6: to ask them what they go through. But they end
18:40
Speaker 6: up damaging her womb and having to remove it. So
18:45
Speaker 6: they didn't really know what they were doing back then
18:47
Speaker 6: with my auntie anyway, and then she's okay now she
18:54
Speaker 6: can go to the toilet normally ss that require any
18:56
Speaker 6: medication or anything. But from what my mum said, she
19:01
Speaker 6: apparently had a storma for a few months. But yeah,
19:05
Speaker 6: I'm not quite sure in her. But my niece, she
19:08
Speaker 6: lives in Canada, and that's my brother's daughter, and she's
19:16
Speaker 6: what fourteen fifteen fifteen now theen now And when she
19:21
Speaker 6: was born, she was about two months old and she
19:24
Speaker 6: got her storma put in and she had a stoma
19:27
Speaker 6: for six.
19:28
Speaker 4: Months and then it got reversed all through. She can
19:35
Speaker 4: go to toilet herself now, but even now she requires
19:40
Speaker 4: like saline water. So for an hour each morning, she
19:45
Speaker 4: has to have been connected through a little thing in
19:52
Speaker 4: her belly so called button, like a button in her belly.
19:55
Speaker 4: I don't know if they do it different. I'm assuming
19:58
Speaker 4: they do it different in different countries that deal with definitely,
20:00
Speaker 4: but she's got like a.
20:00
Speaker 6: Button in her belly which they connect she connects to
20:03
Speaker 6: for an hour and just to sit on the toilet
20:05
Speaker 6: and basically empty herself and then isn't it rest of
20:08
Speaker 6: the day she continues as normal. But that's when she
20:12
Speaker 6: just empties herself every morning and she can just continue
20:17
Speaker 6: her day as normal.
20:21
Speaker 4: But yeah, that's the extent they've got it.
20:23
Speaker 5: Yeah, the the Mickey button, the belly butts. Yeah, that's
20:29
Speaker 5: quite a popular one in the American of the America.
20:34
Speaker 5: There's been quite a few people I've spoken to who've
20:36
Speaker 5: had that. I guess over here we've we've kind of
20:39
Speaker 5: done the ace malone, the kind of made out of
20:43
Speaker 5: the appendix. We tend to do that quite often over
20:47
Speaker 5: I mean, you have either or I think it's sometimes
20:50
Speaker 5: it comes down to surgical preference and things like that.
20:54
Speaker 6: Yeah, I mean she's she doesn't have to limit what
20:58
Speaker 6: she drinks me from my niece, but she had done
21:03
Speaker 6: so Echois. She yeah, you are telling us about it.
21:10
Speaker 6: She only has that hour in the morning, but she
21:13
Speaker 6: has to get up pretty early to do it. She
21:14
Speaker 6: has to get five o'clock every morning and sit on
21:17
Speaker 6: minute for a whole hour and then I'm assuming fluids
21:22
Speaker 6: that go through with her empty of her completely and
21:24
Speaker 6: then she's fine to the day. But I know it
21:28
Speaker 6: took her a while to find something that blocked for her,
21:31
Speaker 6: and they was considering putting the stomach back in. But
21:33
Speaker 6: where she's fifteen, which is a bit more aware and
21:38
Speaker 6: that self conscious, I'd say, because I mean, I know
21:42
Speaker 6: I was at that age.
21:43
Speaker 4: I would have been.
21:44
Speaker 6: Distraught if I was that age not to have a
21:46
Speaker 6: snowy pin, because that's hard feel naturally. She decided to
21:51
Speaker 6: try this way and it's working. Sorry, but if it
21:53
Speaker 6: doesn't work in suiture, I think there is the option
21:56
Speaker 6: to have a stone on back in.
21:59
Speaker 5: Yes, really good, No, it's good to hear. I think
22:03
Speaker 5: it's good to hear that there's advancements in medicine from
22:07
Speaker 5: even from my time having my ace and things like that.
22:10
Speaker 5: So it's yeah, no, that's and it's a very interesting.
22:13
Speaker 5: I always find it interesting hearing family connections when it
22:17
Speaker 5: comes to down to bruns. I mean it's like, like
22:19
Speaker 5: you said, ed, when the doctors are saying, oh, no,
22:21
Speaker 5: it can't possibly be and this, that and the other anything.
22:24
Speaker 2: Well, it's a coincidence, isn't it. It can't just be
22:28
Speaker 2: a coincidence in so many different cases they offered genetics tested.
22:34
Speaker 2: Oh but there's been there's been no follow up with
22:38
Speaker 2: that whatsoever, which I found it quite extraordinary, and I
22:44
Speaker 2: think that was it was mentioned two three times to
22:49
Speaker 2: be fair. And then I think it got to the
22:51
Speaker 2: point where, because we've been in for so long with her,
22:58
Speaker 2: they were just trying to progress her, to get her
22:59
Speaker 2: at you know, and the stone and with her stoma
23:06
Speaker 2: because of the high output, because of how far up
23:12
Speaker 2: the intestine the herstbuns would affect it. Her outputs. Anything
23:18
Speaker 2: goes in comes out, and the absorption is they couldn't
23:27
Speaker 2: tell you because it literally she can have a drink
23:33
Speaker 2: in a couple of minutes that's in her stone bag.
23:37
Speaker 6: Okay, but them sorry for but that's why with it
23:43
Speaker 6: you have to be so careful what she can eat
23:45
Speaker 6: and what she part eat, you know.
23:49
Speaker 2: But she owns it. She literally owns it. And all
23:55
Speaker 2: she's known is that, and she's so positive about it.
24:01
Speaker 2: And I love that. I love that I can. We
24:04
Speaker 2: didn't think we would get her to where she is now,
24:13
Speaker 2: and we take each day as it comes because we
24:20
Speaker 2: we wasn't promised tomorrow. You know, We've always lived in
24:25
Speaker 2: the real world with her and with other factors that
24:33
Speaker 2: come with the her frongs. I don't think people pay
24:36
Speaker 2: you for that, and we know now that her her
24:46
Speaker 2: kidneys and liver there they're clogging because the TPN clogs out,
24:51
Speaker 2: doesn't filter things because it's the man made substance. It's
24:56
Speaker 2: it's quite concentrated. The the balances are okay, they're they're
25:04
Speaker 2: doing okay. It's just the urear levels and this. And
25:09
Speaker 2: you become a doctor. You become a doctor anything to
25:12
Speaker 2: do with anatomy leading off from hirstbongs. You're like, yeah,
25:17
Speaker 2: I'm there all over it. I know what I'm saying now,
25:20
Speaker 2: you know. And people look at you as to say,
25:23
Speaker 2: you must have something wrong with your coming out of
25:25
Speaker 2: these words, you know, but it's your life and and
25:30
Speaker 2: I think that's a positive to take away from it.
25:34
Speaker 2: I've become i don't know, like a sort of a
25:42
Speaker 2: subject matter expert within that field, do you know what
25:45
Speaker 2: I mean? And it is quite incredible to see how
25:51
Speaker 2: you can progress with hirsh buns at such a high level,
25:56
Speaker 2: high level of how much of it's affected here, you know.
26:02
Speaker 2: And what surprised me was how many people have a sohmer.
26:11
Speaker 5: One in two and something like that.
26:14
Speaker 2: Incredible And I'll tell you why. We're like she when
26:21
Speaker 2: was it? I think it was last year. There's an
26:22
Speaker 2: old lady and she loves old ladies. She talks to them,
26:27
Speaker 2: you know, and this and this old day. Oh can
26:30
Speaker 2: she have one of these? Chris, We've got a limit
26:32
Speaker 2: not what she eats. And because she can't have this
26:35
Speaker 2: because it's like popcorny crisp and with the shell very
26:40
Speaker 2: you know, don't really want to go through the stoma
26:43
Speaker 2: lodging into placed in a bit of the stoma and.
26:45
Speaker 6: The blockinglusters in the bag is where she did nick
26:48
Speaker 6: some of her sisters before and it clustered into like
26:52
Speaker 6: a big fall.
26:54
Speaker 2: And we've got a limit sort of that because obviously
26:57
Speaker 2: our condition and she's gone. I was she went, oh yes,
27:01
Speaker 2: just what SMA. I was like, you know what, some
27:06
Speaker 2: some people that have found that a bit weird, but
27:09
Speaker 2: I'm like, full respect, you like, absolutely brilliant. Like and
27:16
Speaker 2: now you're starting to hear about it more and more.
27:18
Speaker 2: Like the marathon runner that done the first marathon with
27:20
Speaker 2: his doma and you know, I think, here's a couple
27:23
Speaker 2: of years ago now, but it's just the the life
27:28
Speaker 2: it leads on to varies for different people, and it
27:34
Speaker 2: has been with eld a certain wow a roller coaster
27:38
Speaker 2: to say the least, and the long term for her
27:43
Speaker 2: now it's very cloudy, but we know, we know, sorry,
27:55
Speaker 2: we know that there are certain things that we need
27:59
Speaker 2: to do for her to put it into place for her,
28:06
Speaker 2: to give her the best on ear life that we can.
28:10
Speaker 2: You know, I think if you let him all your life,
28:17
Speaker 2: it will rule you if if you understand that and
28:26
Speaker 2: you turn everything into positive because you never know what's
28:29
Speaker 2: going to happen around the corner. And I think that's
28:31
Speaker 2: one thing with her, Like we watch her flourish and
28:37
Speaker 2: she she's brown into this little girl that we didn't
28:41
Speaker 2: think we'd have here h and she's just amazing cheers
28:49
Speaker 2: and the difficulties she faces every day, it's like.
28:54
Speaker 6: Yeah, as an adult, maham, I would handle that, and
28:58
Speaker 6: she gets through its so well. I mean, I know
29:02
Speaker 6: I'm speaking for both of us when I say this,
29:03
Speaker 6: but Christmas is quite a touchy season for us because
29:08
Speaker 6: Leddy's first Christmas was in hospital and were done there
29:12
Speaker 6: together and we were in her little side room doing
29:16
Speaker 6: the letters, just free together and we're just trying to
29:19
Speaker 6: make a lot of exaing to our child, Aida saying, oh,
29:22
Speaker 6: two trees are better than one and just making it better.
29:26
Speaker 6: But ultimately we didn't even think we'd have our home
29:29
Speaker 6: for any Christmas. And now we're coming up to what is.
29:32
Speaker 4: This her third bird, fourth but fourth Christmas? I think, yeah, yeah,
29:40
Speaker 4: so four Christmas.
29:41
Speaker 2: So third were a home.
29:43
Speaker 6: And that amazed me in itself. But I just wanted
29:46
Speaker 6: to add on to what you were saying about it
29:49
Speaker 6: being the debate between it being hereditary and not, because
29:53
Speaker 6: when we were always obviously told it's not it doesn't
29:57
Speaker 6: run in the family and stuff. And so when we
30:01
Speaker 6: had the conversation with them, like weys have children in
30:03
Speaker 6: the future, and they said, oh, no, no, your other
30:05
Speaker 6: children would have it because it doesn't run in the family.
30:11
Speaker 6: But then we did speak to someone they said, oh,
30:13
Speaker 6: it's very very likely that your next child, if you
30:16
Speaker 6: do have another child, will have it. He doesn't because
30:19
Speaker 6: we've obviously got another child now. But we were very
30:24
Speaker 6: much told, like we were devised not to have more
30:26
Speaker 6: children just in case if you don't want to go
30:28
Speaker 6: through this again. He hasn't got it either, So and.
30:36
Speaker 2: This is another way. I've got twelve year old son
30:40
Speaker 2: as well. I'll assure you he's not got it, and
30:48
Speaker 2: he gets running from mal Away. So the gene and
30:54
Speaker 2: the genetic side of things, we know it runs in
30:56
Speaker 2: Laura's family. My son has a little bit of fat
31:00
Speaker 2: from it, which was from the previous relationship. And it's
31:04
Speaker 2: it's pinpointing where it's following on from. And I think
31:08
Speaker 2: when they sit there and say it's not genetic, and
31:11
Speaker 2: you can then you sit there and say, well, my gene,
31:14
Speaker 2: this side hasn't affected. Laura's genes have got two cases
31:21
Speaker 2: of it, and it's sort of like, as I said,
31:24
Speaker 2: it skipped a generation each time because Martin, which is
31:30
Speaker 2: our older brother, it didn't affect her older sister. There's
31:35
Speaker 2: affected Laura's line. You can't tell me it's not, honestly like,
31:43
Speaker 2: it's just incredible life. And they will sit there and
31:46
Speaker 2: fill the brew in the face and to you it's
31:47
Speaker 2: not genetic, and they will and I don't understand. I
31:51
Speaker 2: think it's because there's not enough research there. There's not
31:55
Speaker 2: enough resources that could go into it that far. But
32:00
Speaker 2: they're not. I believe in my own personal thing, I
32:03
Speaker 2: don't believe there's enough out there to sort of pinpoint
32:10
Speaker 2: past Bronx before led I was very it's blindsided by it,
32:18
Speaker 2: you know, I knew ye Law's family. Yeah, I knew that,
32:23
Speaker 2: but until it happens, you don't know.
32:30
Speaker 5: No, I think there's one of the genetics side. I
32:33
Speaker 5: think people, okay, there's fair enough to say there's not
32:36
Speaker 5: enough research to say that it's yeoh is or it
32:40
Speaker 5: is in a certain way, but there's also not enough
32:43
Speaker 5: research to say it isn't. So I think talking in
32:46
Speaker 5: definite is really really difficult when it comes to to
32:50
Speaker 5: say it is or it isn't. I think so really
32:53
Speaker 5: you can always say possibly maybe if it runs in
32:56
Speaker 5: the family there's x percent or whatever, that's fine, But
33:01
Speaker 5: talking in definite, I think is really really tough.
33:04
Speaker 2: Yeah, I agree, I do agree. Yeah, it's it is
33:08
Speaker 2: a very gray area, isn't it. It's you can't, you can't.
33:13
Speaker 2: I think it'll be a very long time until there
33:18
Speaker 2: is a definitive answer there. Yeah, but I think it's
33:25
Speaker 2: not all doom and gloom. No, it really isn't. And
33:29
Speaker 2: listening to some of your pacasts and I listened to
33:32
Speaker 2: people and I think, wow, Wow, it's very different experiences
33:38
Speaker 2: but all so very positive. And I think I took
33:42
Speaker 2: I took something from that because the last three years. Yeah,
33:47
Speaker 2: it's been difficult, and I know it's very difficult. Rose
33:49
Speaker 2: heads for her and in some ways I think whether
33:58
Speaker 2: herst problems, it's taken and a lot of the intestine
34:03
Speaker 2: and just left her with a very very short amount.
34:06
Speaker 2: There are positives I can take from that, and I
34:08
Speaker 2: say I very closed off person when it comes to
34:12
Speaker 2: personal life. But I think going through this whole experience together,
34:19
Speaker 2: it's I can put it. It's changed me.
34:25
Speaker 5: Oh it's bounty, yeah, I can.
34:30
Speaker 2: I can tell you well before this I was I'm
34:34
Speaker 2: quite a bubbly I was. I still am. But I
34:37
Speaker 2: think it's because of the amount of pressure. And you've
34:43
Speaker 2: got to be on your guard all the time with her.
34:46
Speaker 6: You have to be.
34:48
Speaker 2: It's all the appointments, it's all the blood tack get taken,
34:52
Speaker 2: it's weed. All of her line cares, so everything has
34:56
Speaker 2: to be sterile. Every responsibility is through us, and I
35:01
Speaker 2: think that's quite It does change as a person, but
35:06
Speaker 2: not in a bad way. You know, it made me
35:10
Speaker 2: grow up and it's an awful lot and I know
35:14
Speaker 2: Laura could say the same. It's it widens your sort
35:18
Speaker 2: of knowledge, an affect of life, and when it comes
35:26
Speaker 2: to the stone, as you become an expert in doing
35:28
Speaker 2: stone bags, like incredible, incredible. The amount of different ways
35:33
Speaker 2: you can do a stone bag is unreal. I've had
35:36
Speaker 2: untold amounts of different templates are used or do different ways,
35:40
Speaker 2: different accessories you can use for it. Applicator, Oh incredible, her.
35:45
Speaker 6: Skins in so soort hasn't it. It's interrrendous at times
35:48
Speaker 6: where the stone miness has come out and she's not
35:50
Speaker 6: even known.
35:51
Speaker 2: What to do.
35:51
Speaker 4: Yeah, and they're dead coming on.
35:53
Speaker 6: You have to random ideas and they just work and
35:56
Speaker 6: the house I'll get it done in minutes. We do
36:00
Speaker 6: sometimes and I'll.
36:02
Speaker 5: Tell you what the the.
36:05
Speaker 2: Staff that you have around you that we only deal
36:08
Speaker 2: now with one out of Kings Stoney nurse, pediatric nurse,
36:14
Speaker 2: local p direct surgical consultant of Alina or Dash Kings
36:23
Speaker 2: and then we have a community nurse that takes blood. Oh,
36:26
Speaker 2: there's so many people all come together and it's part
36:28
Speaker 2: of a multidisplmary tine just for one person. But it
36:34
Speaker 2: also feel like you look past this country in different
36:39
Speaker 2: other countries. There are there are so many different things
36:43
Speaker 2: other countries do that people don't embrace together a worldwide
36:50
Speaker 2: collaborative in a way and there's so much to learn
36:54
Speaker 2: from how sprungs that. And that's like even by doing
36:58
Speaker 2: this podcast, I wouldn't have known about this. Your podcasting
37:03
Speaker 2: listeners for Laura, you know, and and and I've learned
37:07
Speaker 2: a lot from listening to some of your speakers I have.
37:11
Speaker 2: I think I listened to a lady was it where
37:15
Speaker 2: was it? It was in a different country, and she
37:17
Speaker 2: was going I think her partner worked for the embassy
37:21
Speaker 2: out there. I want to say it was Amy. I
37:27
Speaker 2: might have been.
37:27
Speaker 5: I'm not really sure.
37:29
Speaker 2: Yes, yes, And they take a lot of the barbs
37:33
Speaker 2: his nuts can to test love themselves.
37:37
Speaker 6: Yes.
37:42
Speaker 4: I couldn't believe it.
37:43
Speaker 2: I was just I was just go, wow. And and
37:46
Speaker 2: there's another I think that another one that's the whole website.
37:51
Speaker 5: Yeah, it's fantastic.
37:53
Speaker 2: And literally I was honing to Laura a few months
37:57
Speaker 2: ago that all the medical to and that people people
38:01
Speaker 2: don't understand. Yeah, and there's nowhere you can go unless
38:07
Speaker 2: you know it and you're living it. There's no where
38:08
Speaker 2: you can go. And then I listen to your book
38:10
Speaker 2: and I was like, oh my god, there it is.
38:14
Speaker 2: I was just like, it's amazing, though, isn't it.
38:16
Speaker 4: It is also people that don't go through this stuff.
38:21
Speaker 6: They you've explained it to them, and you know, they're
38:24
Speaker 6: baffled because they're like, what the hell are these words?
38:26
Speaker 6: They're sorry, and then they go, oh, at least he's
38:29
Speaker 6: doing it right now, and I'm like, oh my god. Yeah,
38:33
Speaker 6: I'm just like, yeah, yeah, explain that again.
38:37
Speaker 5: No, No, I just I just on that subject while
38:40
Speaker 5: we've got sort of a few more minutes and just
38:43
Speaker 5: the future itself. I know you've talked a little bit
38:46
Speaker 5: about what's up coming up a little bit. What do
38:48
Speaker 5: you I guess in turn, what do you kind of
38:51
Speaker 5: hope for for the future? For reality, Well, it's a
38:57
Speaker 5: tough one on there. Sorry. So we know.
39:06
Speaker 2: We sat down last week and we have got meen
39:09
Speaker 2: coming up. We're transplanting and so forth, because we know
39:15
Speaker 2: now that she's gone through the phase of our adaptation,
39:20
Speaker 2: it hasn't transpired that's worked or or or hasn't gone
39:23
Speaker 2: where they wanted it to go. And and and now
39:28
Speaker 2: it's time and we was always told when we sit
39:30
Speaker 2: down and go right, we need to talk to the
39:33
Speaker 2: transplant team. We know that's going to be one of
39:35
Speaker 2: the last options. Yeah, so the future is very gray
39:43
Speaker 2: for her, and as I say, we take each day
39:46
Speaker 2: as it comes.
39:47
Speaker 5: Yeah, and.
39:50
Speaker 2: We didn't expect as if we didn't expect time to
39:52
Speaker 2: get through, let alone another year. And I think that's
39:57
Speaker 2: that's just us been positive in this light because we
40:02
Speaker 2: know at any moment things change, and they can, and
40:06
Speaker 2: her deterioration can happen within ten minutes. It really can.
40:11
Speaker 2: But that's where you have everyone around you that understand
40:16
Speaker 2: your situation. Where I work, my manager is absolutely brilliant.
40:22
Speaker 2: Be anything that's to do with my daughter. He will
40:28
Speaker 2: listen and outside of work I can call enof want,
40:32
Speaker 2: but he also has put things in place in work
40:35
Speaker 2: that allows us to drop everything can go. And that's
40:41
Speaker 2: massive for us. That speaks volumes. Laura's dad and my
40:49
Speaker 2: mom my cousin. We have our family unit that we
40:54
Speaker 2: keep so close, and they all understand Lody and they
40:58
Speaker 2: understand how much we cherish on moments and milestones to
41:03
Speaker 2: us are very different from someone at her rage and
41:09
Speaker 2: so forth. And I think that's unless you're you're going
41:12
Speaker 2: through the whole procedure with the horse bunks and what
41:14
Speaker 2: effects it has and what else it entails, you wouldn't understand.
41:19
Speaker 2: But and I do believe, as I said, with your
41:23
Speaker 2: podcast is becoming a voice for hersbungs. It really is,
41:29
Speaker 2: and I just think it's incredible. I do. And she's
41:31
Speaker 2: incredible girl. She is the most strongest, bravest little girl
41:37
Speaker 2: that I know. And yeah she yeah, she made us
41:44
Speaker 2: they're people m a lot, Yes she is.
41:48
Speaker 5: Yeah, Laura, would you like to add anything to that?
41:51
Speaker 4: I feel like me and Ed are very.
41:54
Speaker 6: Very different in how we view things because Ed does,
41:59
Speaker 6: and but I think we compliment to her a well
42:01
Speaker 6: with it because there does like to think long term.
42:04
Speaker 6: He likes to think the worst scenario, whereas I'm quite like, bro,
42:08
Speaker 6: I've got to live for now. We got to live
42:10
Speaker 6: in the moment. Because if we start panicky about things
42:12
Speaker 6: that might have happened one second, that's okay. If we
42:16
Speaker 6: start thinking about things that we can't predict are going
42:20
Speaker 6: to happen and we can't deal with till they happen,
42:22
Speaker 6: we're just going to be unhappy every single day. And
42:24
Speaker 6: I think where we both communicate in different ways of
42:28
Speaker 6: looking at things, we kind of come to a happy
42:31
Speaker 6: medium and just combine the vote because I know there's
42:35
Speaker 6: times where I need to sometimes think more in depth
42:38
Speaker 6: about what's going to happen, and there's sometimes where he
42:40
Speaker 6: needs to chill out.
42:41
Speaker 4: A bit and just enjoy now. So I think what
42:46
Speaker 4: we both hope for is we just want her to
42:50
Speaker 4: be her or as long as we will.
42:56
Speaker 6: Obviously any parent would want as much time will be
42:59
Speaker 6: tid the second have, but we're also realistic in the
43:03
Speaker 6: fact that we just want her to be happy. So
43:05
Speaker 6: as long as she's happy and as long as she's
43:07
Speaker 6: not in pain, that's that's we're okay. We're fine. As
43:13
Speaker 6: long as as long as that doesn't change, that's where
43:16
Speaker 6: we're fine. But we also know that we may need
43:19
Speaker 6: to hit a few umps in the road to get
43:22
Speaker 6: her to that point when things happen. But right now
43:26
Speaker 6: she is doing okay in herself. There are things with
43:30
Speaker 6: her bloods and stuff that we're not happy with, but
43:33
Speaker 6: as a child and a person herself, we are happy
43:37
Speaker 6: with how she is doing. And her brain works absolutely fine.
43:42
Speaker 6: She's a very smart girl, so she's very excited and
43:45
Speaker 6: she's very excited to start school. So I feel like
43:47
Speaker 6: in our brains we just started to get at school
43:49
Speaker 6: in September because that's what she wants to do, and
43:52
Speaker 6: that if she's happy.
43:53
Speaker 4: We're happy.
43:54
Speaker 5: So that's fantastic. Well, thank you so much for this,
43:58
Speaker 5: and I'll add one more thing that hasn't hasn't been said,
44:00
Speaker 5: just how amazing you two are. I mean, everything you've
44:04
Speaker 5: been through, I just it has been a monumental pleasure
44:09
Speaker 5: to meet. Well, I say both of you, all of
44:11
Speaker 5: you hook throughout this podcast and I wish I wish
44:18
Speaker 5: you all the absolute best for the future. And thank
44:22
Speaker 5: you so so much for coming on see Good.
44:30
Speaker 1: Thank you for listening and being part of this growing community.
44:33
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
44:36
Speaker 1: leave a review, and share it with someone who might
44:39
Speaker 1: need it. You can connect with us on social media
44:42
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
44:47
Speaker 5: See you next week, BA,