Latest / Tom's Hirschsprung's Podcast / Episode 107 - Ed Leach and Laura Wilson (Part 1)

Transcript

Episode 107 - Ed Leach and Laura Wilson (Part 1) · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
0:12
Speaker 1: just want to understand more, this podcast is for you.
0:15
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.
0:43
Speaker 2: Hello, and welcome to episode one hundred and seven of
0:47
Speaker 2: Tom's Hirshbrungs Podcast. I am very glad to be joined
0:52
Speaker 2: this morning by two guests, both Ed and Laura. Welcome
0:57
Speaker 2: to the podcast, both of you. Now we are thanks
0:59
Speaker 2: to about your daughter Elidy and her extraordinary experience with
1:08
Speaker 2: Hirshbrun's and a lot of other associated conditions as well,
1:12
Speaker 2: which is just yeah, incredible. And I guess I know
1:17
Speaker 2: you're both going to sort of tell the story as
1:19
Speaker 2: as we go, but I'll start sort of ladies first,
1:23
Speaker 2: if we don't mind, Laura, would you just like to
1:27
Speaker 2: just sort of take us back a little bit to
1:29
Speaker 2: the beginning.
1:31
Speaker 3: Yeah, sure, so normal pregnancy with her, there was no
1:36
Speaker 3: concerns there, and then I got to it was the
1:41
Speaker 3: day before us flake seven weeks and they said that
1:45
Speaker 3: the baby's bit small. So they said they want to
1:48
Speaker 3: induce me and I was like, okay, that's fine, but
1:51
Speaker 3: I'm not doing it now. I'll do it tomorrow. So
1:53
Speaker 3: I've got children at home I want to be with
1:55
Speaker 3: and it's just a lot, and they wanted to hit
1:58
Speaker 3: me in there and then, and I was like, no,
1:59
Speaker 3: I need a bit of time to process it. So
2:02
Speaker 3: they said that's fine, come back first thing in the morning,
2:05
Speaker 3: and then yeah, we went back in, went through the
2:10
Speaker 3: induction process and they got to six centimeters dilated with yeah,
2:17
Speaker 3: and then it decided it was best to do a
2:22
Speaker 3: sea section because I wasn't progressing enough and I was
2:24
Speaker 3: like no, in so much pain. This went on for
2:27
Speaker 3: two days, bearing in mind, so two days in labor,
2:30
Speaker 3: I was like, no, I'm soight exhausted. So yeah, sea
2:33
Speaker 3: section was the route emergency section. And then she was born.
2:38
Speaker 3: Sorry cat, she was born. And yeah. From that point,
2:44
Speaker 3: she didn't who for forty eight hours and she didn't
2:49
Speaker 3: and she was flying up greenstick constantly, and the nurses
2:51
Speaker 3: kept saying to me, no, it's normal, No, it's fine.
2:55
Speaker 3: So we got sent home at forty hours after she
2:58
Speaker 3: was born. We were home for eight hours and they said,
3:00
Speaker 3: if it snot had gone for toilet, like, come back in.
3:04
Speaker 3: So we came back in and I was very out
3:08
Speaker 3: of it. I was very much drugged up, trying to
3:12
Speaker 3: feel normal with so much pain relief. It was ridiculous,
3:15
Speaker 3: and I was a bit blurry as to what went
3:17
Speaker 3: on here, but from what Ed told me, they took
3:21
Speaker 3: her for an X ray in the A and E
3:23
Speaker 3: bit at our local hospital, and I was falling asleep
3:26
Speaker 3: because I was so out of it, and apparently they
3:31
Speaker 3: saw something, but they never actually told us what they saw,
3:34
Speaker 3: and they just said you need to get up to
3:36
Speaker 3: Evelena were calling an ambulance and we were like, oh,
3:38
Speaker 3: I never even heard of Evelina in our whole lives,
3:41
Speaker 3: so we were like oh, and me, I was quite
3:43
Speaker 3: naive to it. I was thinking, oh, no, it's fine.
3:46
Speaker 3: I'll probably have to give her I don't know, something
3:48
Speaker 3: like laxatives and still be fine. Didn't even think even
3:52
Speaker 3: though we didn't know what Herstbrungs was because who members
3:55
Speaker 3: of my family have it? But I did mention that
3:58
Speaker 3: through my pregnancy and they said, no, no, women can't
4:02
Speaker 3: carry the gene to pass on to their children. And
4:05
Speaker 3: that's what I was told by a midwife, by two
4:08
Speaker 3: midwives actually, and yeah, so we put that back of
4:12
Speaker 3: our minds until we went to London and they were
4:17
Speaker 3: just doing so much stuff that we had never known
4:21
Speaker 3: or seen before. They would try and wash outs, and
4:24
Speaker 3: they were putting canulas in her, giving her fluids and
4:29
Speaker 3: she wouldn't take any feed. I was trying to breastfeed
4:33
Speaker 3: her and she was just formiting. So then they had
4:36
Speaker 3: to say, oh, we're going to do one million hour
4:40
Speaker 3: and then they upped it to two and it just
4:43
Speaker 3: wasn't It wasn't working, nothing was being kept down. Her
4:46
Speaker 3: tummy was so distended that they had to do the
4:50
Speaker 3: washouts and they were trying to get us to do
4:52
Speaker 3: the washouts. Yeah, and it wasn't until she was actually
4:56
Speaker 3: a week old that they actually diagnosed her. But that's
4:59
Speaker 3: only been because they went to go do some tests
5:02
Speaker 3: and then they said, do you know what it could be?
5:05
Speaker 3: And I said, well, Hurstprung's one's in the family. Could
5:07
Speaker 3: it be that? And then I'm assuming they've done one
5:10
Speaker 3: of the tests for that. Maybe Ed remembers a bit
5:13
Speaker 3: more detail than I do, but yeah, it was hert
5:16
Speaker 3: sprung say, I remember they said to a room and
5:19
Speaker 3: explained it to us. But yeah, before that's a bit blurry.
5:23
Speaker 3: I think it might be able to fill in a
5:25
Speaker 3: few gaps there.
5:26
Speaker 2: Yeah, if you wouldn't mind it. I mean kind of
5:29
Speaker 2: the yeah, the gaps where Laura was kind of out
5:32
Speaker 2: of it, the man on the ball at that stage.
5:39
Speaker 4: The thing is, I could I couldn't put myself in
5:43
Speaker 4: Laura's position, as I said, where she had just had
5:47
Speaker 4: a C section literally forty forty odd hours prior. You know,
5:54
Speaker 4: she had a lot of pain medication. So we've gotten
5:57
Speaker 4: to we've got home with Led and I knew before
6:06
Speaker 4: we'd even left the hospital there was something wrong. It
6:10
Speaker 4: was late at night the night before before Laura come
6:14
Speaker 4: home with eld that she was she's not latching, and
6:17
Speaker 4: then she did latch, and then she was throwing up constantly.
6:20
Speaker 4: So I went because law on the breast feet, which
6:23
Speaker 4: I think brilliant. You know, they need that Kirk colstume
6:27
Speaker 4: and so on. First, But then we had to last
6:32
Speaker 4: as was go up, get ready mades for her to try.
6:37
Speaker 4: Tried them, No, still nothing, and I could hear in
6:42
Speaker 4: Lawa's voice I knew it was she was struggling with it,
6:47
Speaker 4: you know, getting nurses to help her to get to feed.
6:52
Speaker 4: She wouldn't she hadn't booed. The next morning, kept throwing
6:56
Speaker 4: up and I said, you can't, you can't believe her.
6:59
Speaker 4: Lot that. Yes, it's not right. You know, she just
7:02
Speaker 4: had to c section for one. She's not pooing, she's
7:05
Speaker 4: not feeding properly, and you want to release her. That's
7:07
Speaker 4: not that's not how this goes. But I think this
7:10
Speaker 4: was at the time where they're changed the protocols of
7:14
Speaker 4: releasing babies and mums, and it was up and until
7:20
Speaker 4: the four hour time scale. They were allowed to go
7:24
Speaker 4: until they has to take her own if she hasn't
7:29
Speaker 4: pooed until ten o'clocks even and then yeah, come back,
7:33
Speaker 4: sat there and watched that clock, law Aida and led
7:38
Speaker 4: was add a little nap and soon a family come
7:42
Speaker 4: around at night we have to think to eat and
7:44
Speaker 4: it's ten o'clock. Sorry.
7:49
Speaker 2: Yeah, that's a tough one. That is a really I
7:52
Speaker 2: can't imagine. I cannot imagine what that that.
7:57
Speaker 1: Would feel like.
7:58
Speaker 2: No, not at all far.
8:02
Speaker 4: That's motion it was in Annie and the doctor was amazing.
8:09
Speaker 4: She was absolutely fantastic and she still works her now
8:12
Speaker 4: and when we got up with if we'd ever need
8:15
Speaker 4: to go into hospall, we'd go. And if she's on
8:17
Speaker 4: and she's always got issue and she remembers eladish straight
8:21
Speaker 4: all the time. Done the ray and I believe there
8:27
Speaker 4: in that X ray she had spotted what we learned
8:31
Speaker 4: a week later in Evelina that she had a mal
8:36
Speaker 4: mal rotation of the intestines and stomach and where obviously,
8:44
Speaker 4: as you know with the horse ones, it's not with
8:46
Speaker 4: the gangling cells and not pushing anything through. I believe
8:49
Speaker 4: that the bow would expand it and it got to
8:53
Speaker 4: a point where it was just getting bigger and bigger
8:55
Speaker 4: and bigger inside her. At that point they requested us
9:03
Speaker 4: to be transferred up to Evelina, and that was a
9:07
Speaker 4: whole another Plava. There was a nurse, fantastic chearge nurse
9:12
Speaker 4: there with us, So I'll take them up, doesn't matter.
9:14
Speaker 4: I'm going to go have my hours and don't care.
9:17
Speaker 4: I want to get them up there. I'll go with them.
9:21
Speaker 4: And I still remember the nursing charge there shut it down. No,
9:27
Speaker 4: you're not going over your hours. And I just looked
9:29
Speaker 4: at this woman and I thought, Wow, like you've got
9:33
Speaker 4: nurses here that are going above and beyond and and
9:37
Speaker 4: you're stopping them just because the anxious Yeah, well, let's
9:41
Speaker 4: not get into that as political. But we had to
9:45
Speaker 4: wait until the morning shift for the woman who lived
9:49
Speaker 4: on campus in there's nurse houses there, and then she
9:55
Speaker 4: turned up late, overslept. By this, you can imagine, I've
10:03
Speaker 4: got a baby there that's had candas putting an et
10:08
Speaker 4: ray done. My she was free at the time, Aida,
10:14
Speaker 4: my other daughter, she was falling asleep in qqm A.
10:18
Speaker 4: And then it was early after the morning. My cousin
10:22
Speaker 4: who lives quite close to us, she went and stayed
10:25
Speaker 4: and took Aida and stayed there, and then that she
10:30
Speaker 4: went to Laura's dad. After that for a couple of weeks,
10:34
Speaker 4: and then that morning she turned up I think about
10:39
Speaker 4: half seven eight o'clock in the morning and went up
10:43
Speaker 4: to London with Laura. But the ambulance made Laura hold
10:46
Speaker 4: the baby all the way up to London instead of
10:49
Speaker 4: putting her in the car seat and putting her. Mind
10:51
Speaker 4: Laura's just had a seat section and we had a
10:54
Speaker 4: car seat, and we had a car seat. It was
10:57
Speaker 4: totally dumbfounded, but it is what is bitch that morning,
11:03
Speaker 4: Law is obviously thinking what's going on? You know, no
11:08
Speaker 4: one's even told us. They said that they saying on
11:11
Speaker 4: the X ray, which transflied later on to be what
11:17
Speaker 4: the mal rotation, et cetera. Straight up to London, and
11:22
Speaker 4: it was just it was It was like one hundred
11:24
Speaker 4: miles an hour within such a short space of time,
11:29
Speaker 4: everything in our lives had stopped, literally stopped. I couldn't
11:36
Speaker 4: imagine what was going through Laura's head. I mean, coming home,
11:42
Speaker 4: grabbing it, getting stuff to drive straight to London. You
11:47
Speaker 4: sit there thinking what was taking No one, no one,
11:52
Speaker 4: no one speaks to you, no one, no one, no
11:54
Speaker 4: one prepares you for a life that's gonna be turned
11:59
Speaker 4: upside down, which gets told your new normal constantly. That's
12:07
Speaker 4: I think that's the worst thing. It's You've got a
12:10
Speaker 4: new born which you want to enjoy. You've got mum
12:13
Speaker 4: who's just had a sea section, just wants to enjoy
12:15
Speaker 4: a new baby, and it's just gone, no, turn upside down,
12:20
Speaker 4: straight to London. And yeah, it was just crazy. We
12:25
Speaker 4: got to London. For the first seven days it was
12:32
Speaker 4: up and down, up and down, up and down. Law
12:36
Speaker 4: and the sea section had got infected because of the
12:40
Speaker 4: stress the up and down moving about led this doctor
12:47
Speaker 4: h and they work in shifts up there that now
12:49
Speaker 4: on a shift rotation. I know as a parent you're
12:54
Speaker 4: going to go, well, that's your view as a parent.
12:57
Speaker 4: Sometimes you know, you get you get the wrong idea.
13:01
Speaker 4: This doctor just didn't listen to me. He just didn't listen,
13:04
Speaker 4: didn't want to listen. Then my Lawa's condition was getting worse,
13:09
Speaker 4: and it was the ladies on Evelina Ward who said, Lord,
13:15
Speaker 4: you need to go down to the other side of
13:17
Speaker 4: the hospital to see the doctors because that's not right.
13:22
Speaker 4: The affection started spreading. So she waited around there for hours.
13:27
Speaker 2: And he was.
13:31
Speaker 4: I see that's the word. And then Laura got seen
13:37
Speaker 4: while the doctors around there, her dad come picked her
13:41
Speaker 4: up for a couple of days to go and rest
13:43
Speaker 4: because she needed She couldn't she couldn't function properly. She
13:48
Speaker 4: wouldn't be able to be the mom she wanted to
13:50
Speaker 4: be being in that condition. They started with Barret shouts
13:58
Speaker 4: for melody after laurad expressed a lot of milk, haven't
14:02
Speaker 4: you to leave with lady to try and you know,
14:08
Speaker 4: put her through the n G tube for for her
14:10
Speaker 4: and so forth, because she wouldn't take it orally, and
14:12
Speaker 4: then she tried taking it orally. And I do believe
14:17
Speaker 4: that the initial part of diagnosing hir Sprungs and trying
14:20
Speaker 4: to figure out if it is hirs Sprungs is hit
14:24
Speaker 4: a mess. It's trying arrow. I believe so from what
14:27
Speaker 4: I've seen and listened to some of your podcasts and
14:30
Speaker 4: then doing my own research, I do believe it is
14:32
Speaker 4: trying to know and what works from one might not
14:34
Speaker 4: work for another. And I think that's something you accept.
14:40
Speaker 4: But it was only on the day seven, wasn't it.
14:46
Speaker 4: There was Day seven? I I said to Hate, I
14:52
Speaker 4: need to go home and get led new clothes, me
14:57
Speaker 4: fresh clothes and bring Laura back because Lord, over a
15:00
Speaker 4: couple of days and you just to try and rest
15:02
Speaker 4: and try and do that. I got jove from Lee
15:15
Speaker 4: London to round Gate and hunting my little girl a
15:20
Speaker 4: week either I literally walk walk through the door. I'm
15:30
Speaker 4: going a phone call to say we need to get
15:35
Speaker 4: into surgery. She'd had two previous sector rays that day,
15:40
Speaker 4: A lot of take her down.
15:41
Speaker 2: To and then.
15:49
Speaker 4: On sorry, no, they're called first to say there's been
15:54
Speaker 4: an accident. I don't think it's really took her down.
15:58
Speaker 4: Director and they had to kill the the pump to
16:02
Speaker 4: the the baby thub and if it's a student had
16:09
Speaker 4: taken it down not I understand. It's very busy. You
16:12
Speaker 4: know that there's still certain things that you do, help
16:16
Speaker 4: and safety you do. I hadn't secured it and it
16:21
Speaker 4: had fallen and it were on the head. I'll figure
16:26
Speaker 4: what though. I was getting on here, like how can
16:30
Speaker 4: you allow a pump and they're bulky to fall and
16:33
Speaker 4: hit her on the head. You know there was an
16:37
Speaker 4: ending to that further on down the line, because I
16:41
Speaker 4: can sure you didn't go in our favor whatsoever. And
16:47
Speaker 4: then I still remember the consultant's name, Ms. Cathad. Fantastic woman.
16:55
Speaker 4: Fantastic woman. She was like, we need to get her
16:58
Speaker 4: into surgery. I just pulled up and ram two hours
17:00
Speaker 4: later just to change clothes. Head straight rack up there
17:04
Speaker 4: in my daughter and so we need to get her
17:05
Speaker 4: into surgery. She's at a point where if we don't
17:09
Speaker 4: do something right at the second, there's gonna be a problem.
17:15
Speaker 4: There's a little boy and he's coming be sleeping. But
17:18
Speaker 4: I'm I can assure you she'll be down and you'll
17:21
Speaker 4: you'll see and you'll be amazed to see her. We
17:26
Speaker 4: need to get her into surgery. We need to perform
17:29
Speaker 4: surgery now, for it's too late. I literally jumped back
17:34
Speaker 4: in the car. I was there five minutes. I think
17:38
Speaker 4: I was at home five minutes straight back up. I
17:42
Speaker 4: remember the giant and the heavens opened on them roads
17:49
Speaker 4: and I was, yeah, I'll probably was speeding, but it
17:52
Speaker 4: didn't matter. I got to London and the next time
17:58
Speaker 4: we've seen her was intensive care. That nothing prepares you
18:04
Speaker 4: for that, nothing at all at all, because you've seen
18:12
Speaker 4: your baby, you know, and you're trying. They've been trying
18:15
Speaker 4: bow or shouts after telling them to stop. Well, I
18:17
Speaker 4: didn't stop working as Hurstpones in the family. The amount
18:22
Speaker 4: of times we told this doctor and there's hirshpes as
18:25
Speaker 4: Hurstpons And it was a shift change that that's when
18:27
Speaker 4: miss Caphagia had come on the first day she was
18:31
Speaker 4: on her road to saw ELDI something was done. Can
18:36
Speaker 4: you tell me why it's taking seven days for that
18:37
Speaker 4: point for someone not to listen to me, Laura and
18:44
Speaker 4: telling you this is what runs in the family. No,
18:46
Speaker 4: it's not genetic, it's not genetic. Okay, it's strange, but
18:50
Speaker 4: you know, I'm pretty sure there's a correlation there. There's
18:53
Speaker 4: a niece that's got it, there's an aren't you that's
18:55
Speaker 4: got it? Now it's it's at of like skips a
18:58
Speaker 4: generation if you look at the Panlora explained that the family,
19:02
Speaker 4: and it's like it skips a generation each time. And
19:11
Speaker 4: she listened, she listened, and at that point they had
19:18
Speaker 4: created a soma. First off, just to give the bowel rest,
19:25
Speaker 4: I believe that the first one was she'd rotated around
19:29
Speaker 4: the intestines again. The bands, the bands that hold the
19:33
Speaker 4: intestine in place, had all groups up at the top.
19:38
Speaker 4: And the way they explained it to us was was
19:41
Speaker 4: literally like that the intestines have ballooned. The stomach was
19:45
Speaker 4: running wrong way, and they believe that's why it wasn't
19:50
Speaker 4: she was trying her frink up. You know, she was
19:54
Speaker 4: in there for for a good few days, wasn't she?
19:58
Speaker 4: And then she was We sat down our commenter consuls.
20:04
Speaker 4: Then they sat down again with ad and said that
20:08
Speaker 4: they need to perform another surgery on her which they
20:16
Speaker 4: would be able to tell us whether or not it
20:19
Speaker 4: was her bones and where the transition zone was so
20:31
Speaker 4: they I don't know, do you remember the second.
20:36
Speaker 3: Yeah, I think I think she was maybe two weeks
20:41
Speaker 3: old or just after two weeks old. And I know
20:45
Speaker 3: she was in there for over ten hours because they
20:50
Speaker 3: told us to go and walk around, and we just
20:54
Speaker 3: sat there long. Boy just sat there waiting. Yeah, they said,
21:00
Speaker 3: go get some are I get something sweet? And we
21:02
Speaker 3: just we just sat there. We just waited for her.
21:05
Speaker 3: We didn't want to go just in case we missed
21:07
Speaker 3: them and then we had to run up your s.
21:09
Speaker 3: But we just wanted to be there. And I think
21:12
Speaker 3: I think, I'm sure they'd let us both down that time,
21:16
Speaker 3: because when she's had surgeries and procedures, yes, one person
21:19
Speaker 3: can go, one person waits for them both to come back.
21:22
Speaker 3: But I think this time they let us both and
21:26
Speaker 3: we got down there and she was out of it
21:29
Speaker 3: and then oh it was horrible.
21:34
Speaker 4: That is horrible. There was there was another procedure before
21:37
Speaker 4: that one. You're about the lost procedure on the boxes. Yeah,
21:42
Speaker 4: and they all come into one. They all don't merge
21:45
Speaker 4: the amount of just there was a procedure before that
21:50
Speaker 4: because they believe they call the transition zone at fifty
21:57
Speaker 4: five centimeters, so just and the woman she sat down
22:02
Speaker 4: and she explained it. So the colon had transpired, it collapsed,
22:10
Speaker 4: and then as it went back up and transitioned into
22:14
Speaker 4: the small so the illegal valve instead of it and
22:19
Speaker 4: this is the way it explained it. Instead of it
22:20
Speaker 4: being mini valve in between, it was micro so it
22:29
Speaker 4: hadn't it wasn't a correct size anyway. And then what
22:34
Speaker 4: they did was they took a biopsy at fifty five
22:39
Speaker 4: centimeters from the jurdenum downwards and fashioned a stoma at
22:46
Speaker 4: that point. So for the next I think it was
22:53
Speaker 4: the next week or so, that allowed it to see
22:56
Speaker 4: if it became active, how it was doing, and so forth.
23:03
Speaker 1: But in.
23:05
Speaker 4: Between this point that it said, because she's not getting
23:10
Speaker 4: the nutritional support from the milk and so forth, we
23:18
Speaker 4: needed to put in a central light. And we're like, well,
23:23
Speaker 4: what's the central line, you know, and the and they're
23:29
Speaker 4: very good explaining what it does. And I think this
23:34
Speaker 4: is where I sort of blur out what they spoke
23:40
Speaker 4: about with the central venus access and and what it does,
23:46
Speaker 4: because to me, it was just getting in We need
23:51
Speaker 4: her to be functioning in the way she needed to function,
23:54
Speaker 4: you know, And I think it was it was just
23:58
Speaker 4: after that second procedure that she had the central line
24:03
Speaker 4: PIM and she was on twenty four hours a day,
24:08
Speaker 4: wasn't she? It was it was constant needed that.
24:11
Speaker 2: That's how that was.
24:15
Speaker 4: The second procedure, the stona where they'd refashioned it. It
24:22
Speaker 4: was apparently it wasn't it wasn't doing what they wanted
24:24
Speaker 4: to do. They left, So the colon is still inside
24:28
Speaker 4: with a mucus fistula next to it. And that was
24:35
Speaker 4: so that the way they said it was so they
24:38
Speaker 4: didn't lose where it was basically, okay, I'd lose it,
24:43
Speaker 4: but you know, okay, and I'd gone home, hadn't I?
24:52
Speaker 4: And then this is where Laura and explained what they
24:54
Speaker 4: explained it before the third procedure. And I was in
24:58
Speaker 4: the van driving to go and get a low because
25:03
Speaker 4: we were told at this point that you ain't going on, yeah,
25:07
Speaker 4: your whole life. You're going to pick up from where
25:13
Speaker 4: you live and reposition right here for the next for
25:18
Speaker 4: how I belonged that, you know, it takes don't in mind,
25:23
Speaker 4: our rather daughter was away from us with our granddad,
25:30
Speaker 4: and he's incredible.
25:32
Speaker 3: He he was our rock through that.
25:36
Speaker 4: Yeah, we.
25:38
Speaker 3: I couldn't imagine how it would have coped go through
25:41
Speaker 3: that with Aida as well. I mean, she was nearly
25:46
Speaker 3: free and she adjusted so well, and really we shouldn't
25:54
Speaker 3: have expected her to. There was nothing we could have
25:57
Speaker 3: done to prevent here, and he made sure she had
26:01
Speaker 3: normal So he took her out in Lundon. He come
26:04
Speaker 3: and stayed for a month I think almost, and then
26:09
Speaker 3: he visited working. He was working working, so it would
26:15
Speaker 3: give one of us time with Elody, one of us
26:17
Speaker 3: of Aida, and then he'd work and then we'd both
26:19
Speaker 3: get time with Led because he would stop working and
26:23
Speaker 3: be with her and do things there and be the support.
26:28
Speaker 3: And then maybe after two months we came up with
26:33
Speaker 3: the idea of having an hour two with Ada together
26:37
Speaker 3: and that was just have dinner every night. And then
26:40
Speaker 3: one of us had to turn back to this. But
26:42
Speaker 3: when just swap from there.
26:44
Speaker 4: And I think it was that point, wasn't it was?
26:46
Speaker 2: It was.
26:48
Speaker 4: It was recognizing what it takes away from others and
26:57
Speaker 4: how it affects everyone, not just the imminent. I mean
27:03
Speaker 4: the family we have is quite close knit and small,
27:07
Speaker 4: you know, and her dad he's one man that I
27:14
Speaker 4: don't think and I strongly believe I don't think I
27:20
Speaker 4: and it's not my dad, that's her dad. I don't
27:23
Speaker 4: think I would have coped without him there he I mean,
27:33
Speaker 4: and I think he said Laura one time. It was
27:36
Speaker 4: like he'd we've made a head. It was his daughter
27:42
Speaker 4: again and a way that's nice because obviously you know
27:48
Speaker 4: she loves her granddad. See. Yeah, but the day he
27:58
Speaker 4: brought her back, even though it was watched and it's
28:04
Speaker 4: like a movie watch she run down in St. Pancras
28:09
Speaker 4: and I ain't seen her for weeks, and yeah, it
28:16
Speaker 4: was having her back, but he was also losing it
28:19
Speaker 4: for him because it was day in doubt.
28:23
Speaker 3: Ha ha ha.
28:25
Speaker 4: But then he I don't know, it was just like
28:28
Speaker 4: he got everyone in his arms and just powered through
28:34
Speaker 4: like and he still does to his dad, you know.
28:38
Speaker 4: And he works for a big, big firm. He works Vizors,
28:43
Speaker 4: so he was working out of a we work in
28:45
Speaker 4: London and he adjusted his life there. And I don't think.
28:53
Speaker 4: I don't think the effect of how it comes to
28:58
Speaker 4: that with our hersbrungs. I think there's so much more
29:02
Speaker 4: background to it than you know, the hearing now and
29:06
Speaker 4: actually the condition it does because the condition itself doesn't
29:14
Speaker 4: it does restrict you, yes, but there's so many other
29:19
Speaker 4: ways in the way your body can function. But the
29:24
Speaker 4: heartache and the restriction on how you can feel it
29:31
Speaker 4: will always be with you, you know. But yeah, so
29:39
Speaker 4: I'll get back on tracking. I'll divert a bit.
29:41
Speaker 3: The not.
29:44
Speaker 2: Absolutely fine, I quite lie these ones where we sort
29:47
Speaker 2: of jump around from bits and pieces and yeah.
29:55
Speaker 4: When you think about it. So then second to conceeded,
30:01
Speaker 4: I was on the way back home to bring everything
30:03
Speaker 4: back up and the lady they called me, and I
30:10
Speaker 4: just pulled up at home and I knew this meeting
30:14
Speaker 4: was going to happen. It was just we had nothing
30:17
Speaker 4: up there. And it was that point where that said
30:25
Speaker 4: to us that I still remember this because of her care,
30:32
Speaker 4: how much care she was going to require. And I think,
30:35
Speaker 4: I think I think duly bound to actually ask you
30:40
Speaker 4: this because of the care it's needed. And and it's
30:46
Speaker 4: sad to say, but I think families do relinquish responsibility.
30:54
Speaker 4: And I don't, you know, go all your bad person that,
31:01
Speaker 4: But when I sit back and think how much care,
31:06
Speaker 4: how much it takes away from your life, I can
31:10
Speaker 4: understand why people do rink with the responsibility. I do, absolutely,
31:18
Speaker 4: but I couldn't Elie's as you know, I could never
31:26
Speaker 4: do that. But they sat with Law and they said
31:30
Speaker 4: that she may never eat, drink, you know, function like
31:39
Speaker 4: a normal child would. And I think that that hit
31:44
Speaker 4: home then because of how much the hirshbrongs had gone
31:55
Speaker 4: and it took up through a whole intestine. They knew
31:59
Speaker 4: then that the transition zone of the fifty five per cents,
32:03
Speaker 4: it wasn't the transition zone, because prior to that meeting,
32:12
Speaker 4: we was like, well, okay, fifth five centuries is good,
32:15
Speaker 4: like you know, it's that's a good old fast eyes
32:18
Speaker 4: of small intestine remaining. We can we can work with that.
32:25
Speaker 4: And when you're told no, and you know there's another
32:30
Speaker 4: pled to come in to try and find the transition zone,
32:34
Speaker 4: to see how far it had gotten, you know, it's
32:38
Speaker 4: not good. But Lord told me all about that meeting
32:42
Speaker 4: because she was in there and I was on the phone.
32:47
Speaker 3: Sorry, I saw that sort of going to have the kids.
32:52
Speaker 4: Now?
32:52
Speaker 3: Is that when you was traveling back?
32:54
Speaker 4: Yeah, yeah, So.
32:58
Speaker 3: My dad was sitting in Hdu with l D and
33:01
Speaker 3: Aida and I think Ada was playing with the nurses
33:04
Speaker 3: and yeah, so cool be in and I said, I
33:06
Speaker 3: don't really want to have this meeting without her dad
33:09
Speaker 3: because he needs to be Then she's like, you can
33:11
Speaker 3: call him that we need to we need to talk now,
33:14
Speaker 3: like the urgency now. And I was like panicking, So
33:19
Speaker 3: I called called dead and he was driving back. So
33:23
Speaker 3: we had it on his little car speaker thing the phone,
33:28
Speaker 3: and they told him on the phone to begin with,
33:29
Speaker 3: they said, we'll think you should pull over. I don't
33:33
Speaker 3: think you should drive for this talk, and so we
33:37
Speaker 3: did he because he was he was near a service
33:42
Speaker 3: station anyway, and they set us down, while me down
33:47
Speaker 3: and head on the phone, and then they said it's
33:56
Speaker 3: not going to it's not going to get better. We're
33:58
Speaker 3: not going to be able to do anything for her permanently.
34:03
Speaker 3: It's just keeping her comfortable to will never eat, she
34:08
Speaker 3: will never drink, she will never walk or talk or cruel.
34:12
Speaker 3: She'll never get to that far of her life. They
34:16
Speaker 3: said that they don't believe she'll eve and make it
34:17
Speaker 3: three year old.
34:20
Speaker 4: But she has.
34:21
Speaker 3: She's coming out. And they told us, they said, if
34:29
Speaker 3: you want to give up your rights, like this is
34:32
Speaker 3: the time you can do it. And I went, that's
34:36
Speaker 3: not e green option, and Ed said the same. At
34:40
Speaker 3: the end of the day, no matter what obstacles we
34:43
Speaker 3: have to face. She's our child and I don't know
34:49
Speaker 3: what anyone else is do in that situation. And I
34:50
Speaker 3: can't speak for anyone else but for me personally, I
34:53
Speaker 3: don't care if I had a day with her, or
34:56
Speaker 3: ten years of her or anything. She's my child and
34:58
Speaker 3: I will take every time I can. And she's proved
35:03
Speaker 3: them wrong in so many aspects. Obviously they can't guarantee
35:09
Speaker 3: because they can't guarantee anything. It's all a bit unknown
35:15
Speaker 3: with her condition and everything. But yeah, but we took
35:23
Speaker 3: the chance to try and make the chance better for her,
35:25
Speaker 3: and I'm glad we did because I couldn't imagine my
35:30
Speaker 3: lafe for her. Now. She's a character. She's she's so
35:35
Speaker 3: strong in so many different ways and very strong willed
35:39
Speaker 3: as well. She's just amazing, honestly. But yeah, that conversation
35:47
Speaker 3: where they said, we think you should consider it now,
35:50
Speaker 3: I said, there's nothing sad because something to consider. She's
35:52
Speaker 3: my child. That's the end of it, I think, I
35:57
Speaker 3: think with the.
35:59
Speaker 4: The lady and I said, we've always said from the start,
36:03
Speaker 4: don't sugarcoat anything. Yeah, it's trying to know black and white.
36:10
Speaker 4: How it is wallet in tels what her diagnosis is.
36:16
Speaker 4: From the start, it's all and they were always good
36:19
Speaker 4: with that, you know, because I can't work like that.
36:24
Speaker 4: I can't live in a dream world. It doesn't work
36:27
Speaker 4: like that. And then that said that they hadn't gotten
36:33
Speaker 4: transition zone and would have to do it again. And
36:36
Speaker 4: that's when she got to the having the Lad's procedure,
36:42
Speaker 4: where I didn't. I didn't know until last week when
36:49
Speaker 4: I done the form for you, and I was I
36:53
Speaker 4: didn't know. It's a cor appendix ol. I just didn't.
36:56
Speaker 4: I didn't even read it properly, obviously, and it was
37:02
Speaker 4: then bear with me, Bobba pubs hups. So she don't
37:11
Speaker 4: listen though, I'll tell you, she's our own person. She's
37:16
Speaker 4: very strong with this one. Honestly. She gives us on
37:21
Speaker 4: our toes. She's fantastic, honestly. And then we had our
37:28
Speaker 4: and then she had the Lad's procedure and what this
37:30
Speaker 4: then explained that all this, what we're going to do
37:32
Speaker 4: is we'll go in, we will take biopsies, and we'll
37:40
Speaker 4: do them live, we'll test them live. So they'd take
37:43
Speaker 4: a biopsy, they would send it away, they'd get the
37:47
Speaker 4: results of it straight away, literally straight away. And I
37:53
Speaker 4: think that's why it took so long for the procedure,
37:59
Speaker 4: because obviously I think they were doing it at like
38:02
Speaker 4: three or five centimeter intervals. It was something like that
38:07
Speaker 4: they was doing. I can't I can't be specific, I
38:09
Speaker 4: can't remember. I do apologize, but and they got down
38:16
Speaker 4: two just of the small bell remaining twenty two centimeters.
38:23
Speaker 4: So you've got the duodemon flectre durrodenesial flecture coming out
38:28
Speaker 4: of the stomach the bend which they roughly approximate US
38:33
Speaker 4: five centimeters, and then from that point down to the
38:37
Speaker 4: fashion in of the soma, he's twenty two so literally
38:43
Speaker 4: comes out and then goes straight down into the zone
38:48
Speaker 4: bag which yes, it's long segment hers runs, but then
38:55
Speaker 4: falls under a subcategory. And these subcategories aren't quite known
39:00
Speaker 4: because I want to talks about them, because you have
39:06
Speaker 4: the total Colonica ganglinosis, which is a subcarategory of long
39:11
Speaker 4: segment Hirst frungs, yes, and near total. There are more
39:17
Speaker 4: severe forms within it, but it all falls under long
39:22
Speaker 4: segment of hirstprngs.
39:24
Speaker 3: Is and.
39:27
Speaker 4: I believe and in my own opinion, it's just my
39:31
Speaker 4: opinion that they need to be addressed a bit more
39:36
Speaker 4: because from listening to others speak about long segment hirshbrungs
39:43
Speaker 4: or hirshbrungs, whatever it may be, there's so many different
39:46
Speaker 4: forms and it's absolutely incredible how many different forms there are.
39:57
Speaker 4: I think this up to the consulting last week, and
40:00
Speaker 4: I don't think I don't know if he realized I
40:03
Speaker 4: look into things and he was trying. He was explained
40:07
Speaker 4: to us the different forms of of segment along segment,
40:10
Speaker 4: hirshprungs or hirshprungs, and I didn't even iden Rilla's until
40:16
Speaker 4: about a month and a half ago that there was
40:17
Speaker 4: skip segment, And it's like, how does it even work?
40:21
Speaker 4: You know? And it's only that consulting that we had
40:26
Speaker 4: last week that has ever classified led has having total
40:34
Speaker 4: poleonic a ganglinsis because then it's and it all depends
40:39
Speaker 4: on the hospital or department are under because some class
40:46
Speaker 4: under thirty centimeters as total coon a ganglysis and some
40:53
Speaker 4: I think it's a little bit more, not much more.
40:57
Speaker 4: But it's a very great area from what I've read,
41:02
Speaker 4: very gray area. And I couldn't get my head around
41:06
Speaker 4: that that was what it sort of transpired to be.
41:11
Speaker 4: But sorry, going back when she came around from that
41:20
Speaker 4: procedure then Charlotte Holbrook, and she'd done this protheedure and
41:27
Speaker 4: and she'd drawn a very detailed and the artwork was unbelievable,
41:31
Speaker 4: and she drawn this in the post report, and she
41:39
Speaker 4: had she had drawn where the transition zone was prior
41:44
Speaker 4: and then where it was now. For the difference thirty
41:50
Speaker 4: centimeters can make is unbelievable. Because at the fifty five
41:58
Speaker 4: cent me to mark where we bought her trans own was,
42:03
Speaker 4: we were thinking, yeah, it may adapt, and it's called
42:06
Speaker 4: Boo adaptation, which happens in the first two years of life.
42:12
Speaker 4: It goes for a stage of adapting with the hursprungs
42:18
Speaker 4: and that's when they do the reduction and they go
42:20
Speaker 4: we're going to try and we'll test it to see
42:23
Speaker 4: if the reside in Boo adapts to a function of
42:29
Speaker 4: what the bow should do. And where it took it
42:35
Speaker 4: down to the twenty seven including the duodenum altogether, it
42:41
Speaker 4: sort of puts the possibility of that doing that at
42:46
Speaker 4: very very minimal. And when she explained that to us,
42:54
Speaker 4: it was art well, okay, so what do we do
42:58
Speaker 4: from here. Then we were as told that she would
43:01
Speaker 4: have the TPN for life, that that that's inevitable because
43:07
Speaker 4: the remaining bell wouldn't take in the nutritional value of
43:14
Speaker 4: what she needs. But then you'll you also run the
43:19
Speaker 4: risk of because it's so short and there's so up high,
43:27
Speaker 4: do you run the risk of deydration or listening all
43:29
Speaker 4: the electrolytes and so forth. And that was quite hard
43:35
Speaker 4: to take, I think, because you see and you see
43:44
Speaker 4: other babies, and you shouldn't compare your life to others,
43:47
Speaker 4: but you do. Let's let's be real. You look at
43:52
Speaker 4: other babies around you, and you're so happy for them,
43:56
Speaker 4: you are. And this is where I think for law,
44:01
Speaker 4: I can never imagine it because from a man's point
44:06
Speaker 4: of view and a father's point of view, I mean,
44:09
Speaker 4: you're watching your whole world crumble, you are, and you're
44:14
Speaker 4: seeing others and you go, well, why her, Well, why
44:16
Speaker 4: have you done that to her? Like you know, she
44:20
Speaker 4: she's a child, she done anything to deserve that, And
44:24
Speaker 4: then where laws concerned, she wants to take on the
44:28
Speaker 4: mothering responsibility, but she's been taken away from her each
44:32
Speaker 4: step at a time. And as a dad, you just
44:35
Speaker 4: want to go. No, you can't do that. Let me
44:36
Speaker 4: give my baby back. You know you do. It's just
44:40
Speaker 4: it's just the way you functured. I think the way
44:45
Speaker 4: she was on I think it was one million hour
44:48
Speaker 4: through because she had a bag putting, well didn't she
44:51
Speaker 4: pegg tube? She peg tube putting at the same time. Sorry,
44:55
Speaker 4: I forgot about that one. That was another one she
44:57
Speaker 4: was on.
44:58
Speaker 3: She said, Ann, you tube for a while and they
45:00
Speaker 3: kept the inducing while the plague was healing to make
45:02
Speaker 3: the show us thing. It was okay, that's what.
45:06
Speaker 4: Yeah, And she was on one mill one mill and hour.
45:11
Speaker 4: Oh for wow, Like it's a drop, It's literally a drop,
45:16
Speaker 4: and you wanted to have the babies have like three
45:20
Speaker 4: ounces of this age. That's how can U a disease?
45:29
Speaker 4: How can it take over so much? You know, she's
45:34
Speaker 4: a character as you can see. Yeah, and then.
45:47
Speaker 1: Thank you for listening and being part of this growing community.
45:50
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
45:53
Speaker 1: leave a review and share it with someone who might
45:56
Speaker 1: need it. You can connect with us on social media
45:59
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirsprung's Podcast.
46:04
Speaker 1: See you next week,