Latest / Tom's Hirschsprung's Podcast / Episode 52 - With Gemma Boggs

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Episode 52 - With Gemma Boggs · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode fifty two of Tom's Hirshprung's Podcast. We've now officially
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Speaker 1: been going a year, one year into the podcast, and
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Speaker 1: I'm delighted to welcome to our one year show. Gemma.
0:54
Speaker 1: Welcome to the podcast.
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Speaker 2: Gemma, Hi, Hi, don't thank you for having me. I'm
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Speaker 2: excited to be here.
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Speaker 1: Thank you so much for coming on. Absolute pleasure to
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Speaker 1: have you and to make the year long episode of
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Speaker 1: Hirshbrung's one is all the better. Now we're here to
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Speaker 1: talk about your daughter, Dorothy. It was diagnosed with Hirshbrung's disease.
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Speaker 1: Would you like to take me back as where I
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Speaker 1: usually start at the beginning? Would you like to take
1:23
Speaker 1: us back to the start of Dorothy's journey?
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Speaker 2: Yes, sure, So Dorothy was born September twenty eighteen. Pregnancy
1:34
Speaker 2: was all okay, the difference so I've got an older
1:39
Speaker 2: child as well as son who's ten, and throughout the
1:43
Speaker 2: pregnancy was fine, but she didn't move as much as him.
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Speaker 2: And I don't know if that's you know, you look
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Speaker 2: back on things, but she definitely, like I went in
1:50
Speaker 2: for a few extra scans, etc. So she was definitely
1:53
Speaker 2: very very still. But apart from that, everything fine. She
2:00
Speaker 2: was born elective cesarean, so again that all went fine.
2:05
Speaker 2: Thursday morning, presented with a beautiful baby girl, how you know,
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Speaker 2: all lovely. So she was born in Bath hospital because
2:13
Speaker 2: we lived in warm Minister at the time. And then
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Speaker 2: I remember we went up to the room again. She
2:21
Speaker 2: was fine, but she just slept. She just slept. She
2:25
Speaker 2: didn't she didn't cry, she didn't do anything. She also
2:30
Speaker 2: wasn't interested in feeding. Tried a few times, I breast fed,
2:34
Speaker 2: she just wasn't interested. But we thought, me and my husband, well,
2:39
Speaker 2: maybe this is a cesarean child. My first one wasn't.
2:42
Speaker 2: Maybe this is a difference with a cesarean baby. We
2:45
Speaker 2: didn't know exactly, you know, you just don't know these things.
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Speaker 2: So that first Thursday, she slept, she didn't really eat.
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Speaker 2: They even came I think that evening. They bought the
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Speaker 2: lactation specialists around try and get her fit to feed.
3:02
Speaker 2: She was sick a few times, but they weren't too
3:05
Speaker 2: concerned because it was like a yellow color. And then
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Speaker 2: Friday came still the same, still hadn't really fed. Now
3:16
Speaker 2: she hadn't passed her mconium the issue we had, so
3:22
Speaker 2: they tried to discharge us that morning. It actually got
3:26
Speaker 2: missed that she hadn't passed in mconium.
3:29
Speaker 1: Yeah.
3:30
Speaker 2: So the only reason we managed to stay is because
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Speaker 2: I said I'd had caesarean and I'm not ready to
3:34
Speaker 2: go home. So it was quite a scary start, to
3:40
Speaker 2: be honest, because of that. So I managed to push
3:45
Speaker 2: them to let us stay for another night, and I'm
3:48
Speaker 2: so thankful we did because my mum and dad were
3:53
Speaker 2: visiting that evening on Friday, and I will never forget.
3:57
Speaker 2: I was lying in the bed, my mum was holding Dorothy,
4:01
Speaker 2: you know, meeting her granddaughter, and suddenly green vial projectile
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Speaker 2: out of her. So James ran out to go and
4:11
Speaker 2: get one of the midwives. They came in, went and
4:16
Speaker 2: picked went and got another midwife. She came in. They
4:19
Speaker 2: called down bass got a NICKQ down below, so they
4:23
Speaker 2: called down to doctor the nick you. She came running up,
4:27
Speaker 2: looked at that and went, oh, that's that's not right.
4:29
Speaker 2: That's not the right color. And there's some things that
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Speaker 2: stick in your head throughout this. There were some moments
4:36
Speaker 2: that you I don't think I'll ever forget. And she
4:39
Speaker 2: turned to the midwife and said, oh, she's she's passed
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Speaker 2: a maconium, and the midwife looked at them, went me
4:46
Speaker 2: and changed both at the same time, went no. And
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Speaker 2: the face of that midwife I'll never you know, it
4:52
Speaker 2: still chills me to this day because I think she
4:54
Speaker 2: then realized like, this is something really wrong here. So
5:00
Speaker 2: then the next bit's a bit of a blur because
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Speaker 2: it all happened so quickly. She got transported straight down
5:07
Speaker 2: to the NICK queue, plugged into the machine, you know,
5:11
Speaker 2: into the incubator all that. They put a tube into
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Speaker 2: her and started syringing the bile out, suptioning the bile
5:19
Speaker 2: that way, and there was just so much of that.
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Speaker 2: They you know, did one emptied it and another one.
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Speaker 2: So I managed to walk down to the nick queue,
5:33
Speaker 2: still not knowing what was going on. You know, nothing
5:35
Speaker 2: could be mentioned why this is happening. So we still
5:38
Speaker 2: didn't know why Dorothy was puking at the screen. They
5:42
Speaker 2: said it was an avocado color. Then that was the
5:48
Speaker 2: first time they said, oh, something could be wrong with her,
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Speaker 2: as in, this isn't right. So this was the first
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Speaker 2: time we went, Okay, she's not just sleepy, she's not
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Speaker 2: just not feeding because she's there a sterian baby. Obviously
5:58
Speaker 2: we now though that's not nothing to do with it.
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Speaker 2: Something's wrong with her. Obviously your mind just goes what's
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Speaker 2: going on. We didn't know what to think. They then
6:12
Speaker 2: discussed with us what they were doing. So they were
6:15
Speaker 2: taking this spile out of her, and obviously now they
6:18
Speaker 2: realized that she hadn't passed and peconium. They said it's
6:21
Speaker 2: a blockage, and they said it could be Hirchbruns. And
6:26
Speaker 2: it was mentioned to us then, and it was because
6:28
Speaker 2: one of the nurses and I can't remember the connection,
6:32
Speaker 2: but she either had a family member or knew of
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Speaker 2: somebody who had Hirsbrun's. So because of that, it was
6:39
Speaker 2: then mentioned to us quite early on in the process.
6:43
Speaker 2: Of course, never heard of it before, didn't know what
6:46
Speaker 2: it was. I didn't know if it was serious, if
6:48
Speaker 2: it was not, you know, didn't know. But they did
6:52
Speaker 2: say to us, it's probably just a blockage. Don't worry,
6:55
Speaker 2: it's just a blockage. So that's what you cling onto.
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Speaker 1: It's presently just a blockage.
7:00
Speaker 2: She'll be fine. And so they took some X rays.
7:03
Speaker 2: They brought in the X ray machine, wheeled it over,
7:07
Speaker 2: took an X ray and they sent them off to
7:08
Speaker 2: Bristol because that's the closest a children's hospital. But they said,
7:12
Speaker 2: we'll wait and then you're there going, come on, do something.
7:16
Speaker 2: What's going on? And they're kind of you know, they
7:18
Speaker 2: were fabulous the bath that you were absolutely wonderful once
7:24
Speaker 2: she calmed down and they've managed to get to get
7:26
Speaker 2: her to a place where they were happy. They even
7:29
Speaker 2: got her out and they put her on me so
7:31
Speaker 2: I could cuddle her, you know, because so they didn't
7:34
Speaker 2: have to stay in this machine. That Friday night, they said, well,
7:38
Speaker 2: you need to go back up and try and get
7:40
Speaker 2: some sleep. Me and my husband didn't want to leave her.
7:43
Speaker 2: So they wheeled out this iPad on a stick on
7:48
Speaker 2: wheels with a camera that they then put up against
7:53
Speaker 2: her incubator and whatever it's called. Sorry, I'm not very
7:57
Speaker 2: good with the technical land.
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Speaker 1: Yeah it gives they sound well, right, And.
8:01
Speaker 2: So we took that back up and had it by
8:03
Speaker 2: our bed. I'm not sure we got any more sleep.
8:06
Speaker 2: Than we would, but you know, they try. It's these
8:10
Speaker 2: things that they try to do to ease it. So
8:14
Speaker 2: Saturday morning we went back down with her. They'd heard
8:17
Speaker 2: back from Bristol and they made the decision, Yes, she
8:21
Speaker 2: needs to go for further testing because nothing she's still
8:24
Speaker 2: on past anything, and she was still they were still
8:26
Speaker 2: having to get this bile out of her, and she
8:29
Speaker 2: still obviously wasn't feeding or anything. So twelve o'clock the
8:32
Speaker 2: ambulance arrived. James had to move the car and obviously
8:37
Speaker 2: I couldn't drive, having a stairys and again something they said, Well,
8:44
Speaker 2: I said, well, I'm coming in the ambulance with her,
8:45
Speaker 2: and they said, oh, I don't think you'll be able
8:47
Speaker 2: to get in because it's a big step. And I
8:49
Speaker 2: turned to them and said, I'd get on a horse
8:51
Speaker 2: if I could, if I needed to, And I think
8:53
Speaker 2: any mum out there would agree you. Nothing would stop you.
8:58
Speaker 2: So I did get into the ambulance, probably an ambulance.
9:01
Speaker 2: I don't know how old it was, but I'll tell
9:02
Speaker 2: you now it was the most uncomfortable, painful ride of
9:07
Speaker 2: my life. Every I felt every bump. Yeah, but I
9:11
Speaker 2: was with Dorothy, so you know, you just any parent,
9:14
Speaker 2: you just do it, don't you. So we drove to Bristol,
9:20
Speaker 2: walked through the A and E wheeling her through. James
9:24
Speaker 2: was obviously still driving at this point to get there.
9:27
Speaker 2: So we got put onto the actual children's ward. Now,
9:29
Speaker 2: so Bristol has us Saint Michael's which is babies, and
9:35
Speaker 2: the Children's Ward which is actually for children. Right, they
9:38
Speaker 2: made the decision because it could have been hurts buns,
9:42
Speaker 2: or it could have been something that needed surgery. Obviously
9:46
Speaker 2: they didn't know at the time. The Children's ward is
9:48
Speaker 2: equipped for that because that's where the surgery is all happened,
9:50
Speaker 2: whereas that Michael's isn't. So they made the decision to
9:54
Speaker 2: take us there. So we were very lucky and they
9:57
Speaker 2: had a room free because obviously Dorothy being born, the
10:01
Speaker 2: chance of infection and everything was high, so they did
10:05
Speaker 2: put us into a room, but of course it was
10:07
Speaker 2: for children, so she was on a bed. She wasn't
10:10
Speaker 2: in a little you know, she was on this tiny
10:11
Speaker 2: little baby but on this bed. And the nurses at
10:16
Speaker 2: Bristol John's Hospital were fantastic. They looked after us so well.
10:24
Speaker 2: I was entitled to food because I'd just give him birth,
10:27
Speaker 2: but they made sure James had some two they let
10:32
Speaker 2: him stay. We were only really meant to have one
10:34
Speaker 2: parent in because again, if her child's older, he's still
10:37
Speaker 2: not nice, but it's more manageable. But I was struggling
10:39
Speaker 2: to walk. I was meant to be in a bed,
10:44
Speaker 2: so they let him stay. He slept in a chair
10:46
Speaker 2: for a week. But he's in the military. He's used
10:50
Speaker 2: to that, I think. But the fact that we were
10:53
Speaker 2: together was amazing. One thing I did forget to mention
10:59
Speaker 2: was on the day Doreth was born, my eldest whoul
11:01
Speaker 2: break his arm. Yeah, so he did break his arm. Unfortunately,
11:06
Speaker 2: he was fine, but it was funny because we remember
11:09
Speaker 2: that happened before this happened with Dorothy and me and
11:11
Speaker 2: James like, oh, you know, that's nothing, but you know,
11:13
Speaker 2: that's the worst thing that day. So he ended up
11:18
Speaker 2: spending a week with my mum. So he was fine
11:20
Speaker 2: and it was nice not having to worry about him.
11:22
Speaker 2: He was well looked after, he was safe, so that
11:25
Speaker 2: was a he was kept out of it, out of
11:28
Speaker 2: the drama, out of all that because he was only
11:31
Speaker 2: four at the time, so you know. So yeah, so
11:35
Speaker 2: we were in Bristol, settled in. They took her for
11:39
Speaker 2: an X ray Saturday evening where they put the solution
11:44
Speaker 2: up to see where the blockage is and to do
11:48
Speaker 2: the bowls. So my father in law had rushed up
11:51
Speaker 2: from Portsmouth by then. Yeah, he got on his car
11:55
Speaker 2: and he came up to support us, and Jans went
11:58
Speaker 2: into the X ray. I remember sitting outside with my
12:01
Speaker 2: father in law and this is again where it goes
12:04
Speaker 2: a bit bumpy. So off the initial bath trying to
12:08
Speaker 2: discharge us, there's another bump in the road, I think
12:12
Speaker 2: because she's a girl, and there's no I'm sorry I
12:16
Speaker 2: should say, and I'm jumping around.
12:17
Speaker 1: Here, go for it.
12:18
Speaker 2: There's no history of Hirsbron's in anither of our families anywhere, right,
12:23
Speaker 2: and she's a girl, so as you know, it's a
12:26
Speaker 2: very rare disease, and it's even rarer in females. So
12:29
Speaker 2: I just really thought they the chances of her having
12:32
Speaker 2: it were so so slim that they just really thought
12:36
Speaker 2: she she didn't have it. So this doctor came out
12:40
Speaker 2: and said, I shouldn't really tell you this, but it's
12:42
Speaker 2: just a blockage. You're okay, She's okay. So I stood
12:46
Speaker 2: up obviously, relief because by then we'd talk to people
12:49
Speaker 2: like Hirschbum's. We found at what Hirchbuns was and at
12:52
Speaker 2: the time, obviously we thought, well, we don't want that
12:54
Speaker 2: for our daughter, you know. So when he came out
12:57
Speaker 2: and said blockage, the relief, you know, hugged him, hugged
13:01
Speaker 2: my father, nor we we we were just so all brilliant,
13:04
Speaker 2: we'll be we'll be home tomorrow, you know, wonderful, we
13:07
Speaker 2: can forget this and get on with get on with everything.
13:11
Speaker 2: Because they said, putting this solution up for this X
13:13
Speaker 2: ray usually then flashes flashes them out, so she did.
13:17
Speaker 2: Then the mconium came out and a little bit came out.
13:21
Speaker 2: So we were like, oh, brilliant. So took her back
13:25
Speaker 2: to her room and she still just slept. Nothing changed
13:30
Speaker 2: in her. She still wasn't interested in feeding. She still
13:35
Speaker 2: just slept. She was very docile, didn't cry, you know,
13:39
Speaker 2: really nothing that a bait an newborn baby does. She
13:41
Speaker 2: just wasn't doing any of it. But because they said
13:46
Speaker 2: it was a blockage and the radio, you know, they
13:48
Speaker 2: looked at the X rays, they said that it's just
13:52
Speaker 2: a blockage. They were like, no, no, she's fine. So
13:56
Speaker 2: they then tried because she wasn't feeding, they tried to
13:58
Speaker 2: feed her electrolytes for a bottle. Nurse came in. Now,
14:03
Speaker 2: I've not had much experience with hospitals, luckily in my life,
14:08
Speaker 2: so I didn't know how they work, and I didn't
14:10
Speaker 2: realize that hospitals weren't Monday to Sunday, Monday to Friday.
14:16
Speaker 2: So because we went on a Saturday, the staff in there,
14:21
Speaker 2: I mean, they were still great, but the radio acor
14:23
Speaker 2: that read the x rays wasn't, let's say, the one
14:27
Speaker 2: who reads them from Monday to Friday. So he did
14:30
Speaker 2: read it wrong. He made them you know, he made
14:31
Speaker 2: a mistake. People do We don't howl any ill feeling.
14:35
Speaker 2: These things happen. So still wasn't. So they were going
14:40
Speaker 2: to discharge us on Tuesday. Again, So here we go
14:44
Speaker 2: is the second time. Yes, so and again I think
14:50
Speaker 2: you you just you got to advocate for your children.
14:52
Speaker 2: They can't speak for themselves. You have to stand up.
14:54
Speaker 2: And so we'd met miss McNally by then, who was
14:59
Speaker 2: the consultant, or was the consultant at Bristol Children's Hospital.
15:03
Speaker 2: She'd come in in pret you know. So this was
15:05
Speaker 2: from Saturday to Tuesday she'd come in and spoke to
15:07
Speaker 2: us when it could have been hurt Bruns and explained
15:11
Speaker 2: it and you know, and we were told by the
15:14
Speaker 2: nurses there and other dots. So she's the best bow
15:16
Speaker 2: specialist from the you know, from the South. She's really good,
15:20
Speaker 2: you know. So if it is Hirchbung, she's the best
15:22
Speaker 2: hands and she knows what she's talking about. So we've
15:26
Speaker 2: you know, you put your confidence in it, put faith
15:28
Speaker 2: in them. You go, okay, they know what they're doing.
15:31
Speaker 2: We have no idea. And so Tuesday morning she came
15:36
Speaker 2: in with her team and said, oh, you know, ready
15:38
Speaker 2: to discharge, Dorothy, how you're feeling? And I just said,
15:42
Speaker 2: can I just can you just look at her one
15:44
Speaker 2: more time piece? Because her tummy is not looking right,
15:48
Speaker 2: you know. Her bowls obviously had expanded again, had filled
15:53
Speaker 2: up again with the milk that I tried to give her,
15:55
Speaker 2: with the electrolytes, etcetera that they were trying to give her.
15:58
Speaker 2: And she pulled back the blanket and her again never
16:01
Speaker 2: forget the face of miss Minally, you know, it's the
16:03
Speaker 2: same faces as the midwife, and it just dropped and
16:06
Speaker 2: she went, oh, because by that time you could see
16:10
Speaker 2: the imprint of her bow it had, Yeah, it had
16:14
Speaker 2: enlarged so much against her tommy that you could actually
16:18
Speaker 2: see it slightly. Because of course she was only a
16:20
Speaker 2: couple of days old, so it's very small. And of
16:24
Speaker 2: course Miss Allie said, well that's not right, so took
16:29
Speaker 2: her again. Things happened. I always think for them it's quickly.
16:34
Speaker 2: From me and James, it wasn't quickly. I mean every
16:38
Speaker 2: time a nurse comes in, have you got the results?
16:40
Speaker 2: Have you heard something? And they're like no, but you
16:42
Speaker 2: know so because of course they've got other patients and things.
16:45
Speaker 2: But when you're focus as that one child, you want
16:48
Speaker 2: answers straight away. So they started doing this, you know,
16:54
Speaker 2: getting rid of the bile again out of her. They
16:58
Speaker 2: then I can't remember. But if they started doing washouts,
17:01
Speaker 2: then I honestly can't remember. It's all a bit, you know,
17:04
Speaker 2: it all gets a bit blurred together, bearing in mind
17:08
Speaker 2: giving birth a few days before, very hurt. When I coughed,
17:12
Speaker 2: you know, it was I was having to express milk.
17:17
Speaker 2: You know. My mum ran out and got a hand
17:21
Speaker 2: pump for me because they were electric pump because at
17:23
Speaker 2: the hospital wasn't very good because we weren't in the
17:25
Speaker 2: baby's ward, so it was all a bit you know,
17:28
Speaker 2: all these things are happening as well. So they then
17:34
Speaker 2: because they weren't glad was it, because they were going
17:36
Speaker 2: to do a biopsy on the Monday, but they canceled
17:39
Speaker 2: it because they said it was a blockage. So then
17:44
Speaker 2: they scheduled another biopsy in and I think they scheduled
17:48
Speaker 2: that in on the Wednesday. So this was of course
17:51
Speaker 2: again you say on the next day, but it's a
17:53
Speaker 2: long time when your baby is poorly, even twenty four
17:57
Speaker 2: hours is a long time to work. So they did
18:02
Speaker 2: the biopsy Wednesday morning, and I think by then we
18:06
Speaker 2: were hoping it was Hirsbruns. We knew it wasn't just
18:10
Speaker 2: a blockage. We knew there was something more going on.
18:16
Speaker 2: And I think if it wasn't Hirsbruns, what was it?
18:20
Speaker 2: You know, they'd have to do more tests, more things
18:24
Speaker 2: to find out. And I just think by them we
18:25
Speaker 2: were actually It's weird because obviously two days earlier we
18:28
Speaker 2: were hoping anything but Hirsbruns, and now, yeah, our mindset
18:34
Speaker 2: had definitely changed, I think by then. So they did
18:37
Speaker 2: the biopsy on Wednesday, and then Friday they walked in
18:41
Speaker 2: and confirmed perch bruns and I think, yeah, it was weird,
18:45
Speaker 2: but it was a relief. It was a relief to get.
18:50
Speaker 1: Yeah, I was aboud to say, was that was that?
18:52
Speaker 2: Then?
18:52
Speaker 1: A relief at that point from going from oh, I
18:55
Speaker 1: really hope it's not to them, well at least we
18:58
Speaker 1: know what it is.
19:00
Speaker 2: Yeah, yeah, exactly it was. It's a really weird mindset
19:03
Speaker 2: to go through, to be so oh it can't you know,
19:07
Speaker 2: it can't be that just and then actually to have
19:09
Speaker 2: a diagnosis because then you know they can do something,
19:13
Speaker 2: they could help her. You know, they know what they're doing.
19:17
Speaker 2: So then, like I said, I can't remember if they
19:19
Speaker 2: were doing washouts previously, but they definitely were then and
19:23
Speaker 2: I mean her tummy went right down. She then started feeding.
19:31
Speaker 2: I do remember, yes, So I think it was them
19:33
Speaker 2: because they did the washout. She started feeding, she started crying,
19:36
Speaker 2: she started all these things that babies are meant to do.
19:40
Speaker 2: She was doing. So they then spoke to us about
19:46
Speaker 2: obviously all the things that's going to entail what her
19:50
Speaker 2: drums is. We were obviously googling or we can. I mean,
19:54
Speaker 2: there's there's there's stuff out there, but it's it's hard
19:57
Speaker 2: to find. Sometimes you know, there's not that much on
20:00
Speaker 2: hers bruns, so you don't for someone new that's never
20:05
Speaker 2: heard of it before, it's it's hard to find what
20:07
Speaker 2: you're looking for. And also the internet can be that
20:10
Speaker 2: kind of place where it is what you're looking at factual.
20:16
Speaker 2: So we obviously knew more about it and what it
20:19
Speaker 2: was going to be. So then they said to us,
20:23
Speaker 2: we're going to operate on her as a baby. They
20:25
Speaker 2: can operate on babies now, which they said is still
20:27
Speaker 2: quite new and in the scheme of surgeries because they
20:32
Speaker 2: used to do it on three two three, wait till
20:35
Speaker 2: they're a bit older, a bit stronger. So Dorothee she
20:40
Speaker 2: wasn't the first by any means, but they were still
20:42
Speaker 2: quite a new procedure on babies, which we were all
20:46
Speaker 2: four because if she if they waited till she was three,
20:49
Speaker 2: it would have been another surgery stone attached and then
20:53
Speaker 2: you know she was a bit older. So they said,
20:56
Speaker 2: are you happy to do the washouts? We said, brilliant.
20:59
Speaker 2: They said, because you can do the washouts, you can
21:01
Speaker 2: take a home the two months and then she can
21:04
Speaker 2: have the surgery in two months. We said, brilliant, and
21:07
Speaker 2: it's another thing. I mean, the nurses said to us.
21:10
Speaker 2: You know, a few years ago the washouts were only
21:13
Speaker 2: performed by doctors. Then they were only performed by nurses,
21:19
Speaker 2: so the parents weren't allowed to do them, so you
21:21
Speaker 2: had to stay so well, you know, a few years
21:23
Speaker 2: ago we would have had I say, a few years ago.
21:24
Speaker 2: She's six now, so I mean a few years ago
21:26
Speaker 2: before Dorothy was born. Yeah, we Wolady had to stay
21:29
Speaker 2: in hospital for those two months because or go in
21:33
Speaker 2: the morning, come back, go in the evening, which we
21:37
Speaker 2: lived an hour an hour and a half in Bristol
21:39
Speaker 2: at the time, so that wouldn't have been feasible. So
21:41
Speaker 2: the fact that we could do the washouts at home
21:44
Speaker 2: was amazing, you know, all these things that you look
21:46
Speaker 2: back and go, gosh, thank goodness for that because it
21:49
Speaker 2: made it so much more manageable and such and nice.
21:53
Speaker 2: We know, we go and be with our son. He
21:55
Speaker 2: came and gave it dorothyan hospital, you know, which is love.
22:01
Speaker 2: So we ended up taking a home on the Saturday,
22:06
Speaker 2: so she was in hospital from the Thursday to the
22:10
Speaker 2: following Saturday. Went home with all the gear. Uh, you know,
22:14
Speaker 2: did we have to then? Obviously have all the saline,
22:16
Speaker 2: the tubes, the syren, all that stuff with the wash out,
22:21
Speaker 2: and but we were home, and I think that was
22:26
Speaker 2: a big thing as well. That was a big relief.
22:28
Speaker 2: We were home, We were a family again. And obviously
22:31
Speaker 2: it wasn't the first you know, the first two months
22:34
Speaker 2: with her, she had a wash out in the morning
22:38
Speaker 2: and a wash out in the evening, and they worked
22:40
Speaker 2: for her and again her tummy would I mean, I've
22:43
Speaker 2: got photos of her tummy before wash out and then
22:46
Speaker 2: you know after wash out. It's definitely a two person job.
22:51
Speaker 2: So I'm so thankful my husband was there with me
22:53
Speaker 2: and we could do it together. And in fact it
22:55
Speaker 2: became a three person job because THEO would stand at
22:57
Speaker 2: the at Dorothy's head and make her gig and la,
23:00
Speaker 2: you know, and entertain her and so that was lovely.
23:04
Speaker 2: So then operation was scheduled for twenty second of November,
23:12
Speaker 2: so back up to Bristol. They obviously explained to us
23:17
Speaker 2: that they don't know, like was all hirch One's cases,
23:19
Speaker 2: how much of her bow will be removed until they
23:23
Speaker 2: go in. It was keyhole. So she actually had the
23:28
Speaker 2: suave procedure the pool through. So we took her in.
23:35
Speaker 2: We were on the ward then, so we went in
23:38
Speaker 2: on the on the twenty second and went into the
23:42
Speaker 2: operation and we were advised to go away from the hospital.
23:45
Speaker 2: We advised to leave and not sit there. And Dowell,
23:49
Speaker 2: because obviously it's a long operation, I sy test and
23:54
Speaker 2: come back. I mean, it's incredible to me that they
23:56
Speaker 2: can do this on such a small, small hang, still
24:00
Speaker 2: so tiny, and then the whole time we were we
24:06
Speaker 2: went out, we went into Bristol, we got some lunch,
24:10
Speaker 2: but we were obviously waiting for the phone, really wishing
24:13
Speaker 2: the phone wasn't going to win, because we knew if
24:15
Speaker 2: it did, it would be then saying it's longer than
24:19
Speaker 2: we thought, we've had to remove it all or because
24:21
Speaker 2: that was still a possibility. You just don't know till
24:24
Speaker 2: they're in there as it transfires. She was extremely lucky
24:30
Speaker 2: and she had short segment, so she had I've got
24:35
Speaker 2: it written down here how much it was. In the end,
24:37
Speaker 2: it was twenty one point six centimeters removed, so she
24:42
Speaker 2: had like her main bit was about twelve centimeters. Then
24:48
Speaker 2: she had their transition zone and then they take a
24:51
Speaker 2: little bit of healthy bell just to really make sure
24:55
Speaker 2: they've got it all, So that was another relief. That
24:58
Speaker 2: was enough. Other you know, this was the last kind
25:03
Speaker 2: of unknown, and that's pale. You know. I think with hirsprungs,
25:08
Speaker 2: a lot of it is unknown.
25:09
Speaker 1: Every case still is. I mean even after I was
25:12
Speaker 1: speaking to a doctor the other day and she's worked
25:16
Speaker 1: in hir sprungs for years, and she was saying, you know,
25:19
Speaker 1: there's still so much we don't know now, so yeah, oh,
25:23
Speaker 1: you're absolutely right.
25:24
Speaker 2: Yeah, it's and each case is so unique, which is
25:27
Speaker 2: something we didn't really you know again after research and
25:30
Speaker 2: what works one child doesn't work for another? What were
25:33
Speaker 2: you know? And then used every Yeah, so unique that
25:37
Speaker 2: you can't really base. Oh well that worked for them.
25:40
Speaker 2: So hence going if the operation, they don't even know
25:42
Speaker 2: how much bower they have to remove until they get
25:44
Speaker 2: in there, which is is really scary. So she got
25:47
Speaker 2: a slight temperature after that, but that was fine, so
25:51
Speaker 2: we actually went home. She was in the hospital for
25:54
Speaker 2: two nights, went home the next day. So the washouts
25:58
Speaker 2: then stopped and we had to do dilation. So because
26:04
Speaker 2: of the surgery, to stop the the scar tissue closing
26:09
Speaker 2: in as it healed, we had to dilater with this
26:13
Speaker 2: metal bar, and that was the point where I had
26:19
Speaker 2: to bow out because I couldn't handle that. That was my,
26:27
Speaker 2: I think, limit of what I could do. So, you know,
26:30
Speaker 2: thankfully my husband could do it, and I'd still it's,
26:34
Speaker 2: you know, one of those things I look back up
26:36
Speaker 2: and I wasn't there to help him through that, but
26:39
Speaker 2: I couldn't. Yeah, I think it was just it was
26:44
Speaker 2: just my limit. I just couldn't do that. But he
26:47
Speaker 2: did and he obviously had to, and we were obviously
26:50
Speaker 2: having frequentent visits with Bristol Miss McNally checking everything was okay.
26:57
Speaker 2: They increased the diameter of the the bar to do thatch.
27:02
Speaker 2: She had to do that for quite a few months,
27:04
Speaker 2: stop it healing, but always going okay, always fine. She was,
27:10
Speaker 2: she was doing really well. She was doing better than me.
27:13
Speaker 2: If I put that I struggled that first year of
27:16
Speaker 2: her life. I really did not so much because of
27:20
Speaker 2: the Hirschbrungs. I think everything that happens and then they're
27:25
Speaker 2: not knowing.
27:26
Speaker 1: Yes, yes, that makes absolute sense. And I think that's
27:30
Speaker 1: something when I talk to a lot of parents, something
27:35
Speaker 1: that sometimes gets brought up, sometimes that gets missed, the
27:40
Speaker 1: toll it takes on the mothers and fathers. I think
27:46
Speaker 1: some hospitals are very aware of it. Some are sort
27:50
Speaker 1: of solely focused on the child. And I can understand that.
27:52
Speaker 1: I can totally understand that. But that makes a lot
27:56
Speaker 1: of sense to me that actually what you went through
27:59
Speaker 1: and and you've explained that really really well, but it
28:02
Speaker 1: was only what was it, five days? I mean that
28:05
Speaker 1: all of the things you went through in less than
28:08
Speaker 1: a week is more than a lot of people go
28:11
Speaker 1: through in their entire lifetime, you know. And I think
28:15
Speaker 1: the fact that also the fact that you recognize, actually,
28:18
Speaker 1: this has taken an awful lot on me is really
28:21
Speaker 1: good in terms of self awareness as well, because I think, yeah,
28:25
Speaker 1: that dad is an awful lot to go through.
28:27
Speaker 2: Yeah, it was. It was a lot, I think, And yeah,
28:31
Speaker 2: so it was that was difficult. And I couldn't have
28:34
Speaker 2: spoken to you about this six years ago, five years ago,
28:38
Speaker 2: I didn't really speak to anybody about it. I shut
28:40
Speaker 2: it away in a way, you know. Priority was Dorothy.
28:43
Speaker 2: Of course, then obviously the big thing I think in
28:48
Speaker 2: our heads was the entercolitis risk. Was you know, she
28:52
Speaker 2: was young, her immune system wasn't developed, and I really
28:58
Speaker 2: built it up in my head that that was it.
29:00
Speaker 2: She was going to spend her life kind of you know,
29:02
Speaker 2: in cotton wall and not be able to do anything,
29:05
Speaker 2: and this is going to ruin her life. And it
29:07
Speaker 2: was you know, I really did get to that place.
29:11
Speaker 2: And then unfortunately, on December twenty second, she did get
29:16
Speaker 2: taken into hospital. From the most she was fine everything.
29:22
Speaker 2: She didn't have a temperature or anything like that, but
29:23
Speaker 2: you know, they tell you the signs to look out for,
29:26
Speaker 2: and her wind that she passed was the most foul
29:30
Speaker 2: smelling thing we have ever experienced. And again we were
29:33
Speaker 2: a bit like well, but it was. It was awful,
29:37
Speaker 2: but because she didn't have a temperature or anything else,
29:39
Speaker 2: we were a bit. But the team at Bristol are
29:42
Speaker 2: great and that we had the aligned to the STOA
29:44
Speaker 2: nurses even though Jonathan didn't have a stoma, their bowl specialist,
29:48
Speaker 2: Claire and Hillary and they've helped us out in those
29:51
Speaker 2: early days. They were always on the end of the
29:53
Speaker 2: phone so they were placed to go. You know, no question,
29:57
Speaker 2: too small, nothing was an issue. But they told her
30:01
Speaker 2: to bring her in and she did. She got put
30:04
Speaker 2: on the between this drip and all and all that
30:08
Speaker 2: to get it through. So unfortunately she spent her first
30:10
Speaker 2: Christmas in hospital, but she doesn't remember any of it.
30:16
Speaker 1: You know.
30:17
Speaker 2: I think this is the thing we take back that
30:19
Speaker 2: because it was so young, she doesn't remember. She's got
30:23
Speaker 2: her magic tummy, she says, the doctor's fixed her magic tummy.
30:27
Speaker 2: She's very proud because again it was all you know,
30:30
Speaker 2: through keyhole. So she's only got two little scars on
30:35
Speaker 2: her tummy. I did ask her about Hirchbruns and I said,
30:38
Speaker 2: you know, I said to her, because I told her
30:41
Speaker 2: I was speaking to you. She was very excited about that,
30:43
Speaker 2: and I think she's proud. She's proud of it, you know, yeah,
30:47
Speaker 2: she is. We celebrate every time. So she started pouring,
30:52
Speaker 2: probably well just before one. I think she's in diping
30:58
Speaker 2: nappy still and I remember sending my husband a video
31:02
Speaker 2: and I was like, she's perd. I remember opening up
31:04
Speaker 2: nap and I was like, she's poved. My gosh, like
31:06
Speaker 2: I've never been so excited in her life. She was
31:09
Speaker 2: must have been January February time, so she had the
31:11
Speaker 2: operation of November. It took her a while to to
31:14
Speaker 2: start hollering, but yes, so so happy. And from that
31:19
Speaker 2: when she was potty training, she put on the toilet.
31:21
Speaker 2: We'd all celebrate, we had a little song, we'd sing.
31:25
Speaker 2: You know, our neighbors must have thought we were a
31:27
Speaker 2: barmy exactly. And unless the thing I remember, she went
31:31
Speaker 2: to nursery and she went to the toilet there, and
31:34
Speaker 2: she came back she said, no one celebrated. No, I'm stamped.
31:39
Speaker 2: Well I know only that she had done for on
31:41
Speaker 2: the toilet. But you know, I think each male said,
31:44
Speaker 2: each time she's growing bigger, she's she's she's, she's absolutely incredible.
31:49
Speaker 2: We're really lucky. She said, no more instances of entin
31:51
Speaker 2: lighters where we've had to take it to hospital, and
31:55
Speaker 2: there's all these milestone I think she hits that you
31:58
Speaker 2: just breathe a little bit more and you relax a
32:00
Speaker 2: little bit more. The first time she had a temperature,
32:04
Speaker 2: the first time she had diarrhea, and she didn't need
32:06
Speaker 2: you know, and she actually just dealt with it, Yeah,
32:10
Speaker 2: with cowpol and you know that. Oh good, Okay, So
32:14
Speaker 2: every time she gets temperature, we're not going to have
32:16
Speaker 2: to rush off. So but yeah, so I did ask
32:21
Speaker 2: about the heirs wrong, sorry, and I said, you know,
32:23
Speaker 2: do you wish she didn't have it? She said no,
32:25
Speaker 2: And I said, oh, why not. Well, I like being
32:27
Speaker 2: special and she said sometimes, you know, sometimes I do
32:31
Speaker 2: and sometimes I don't. But it doesn't And she's like,
32:34
Speaker 2: it doesn't change anything for me, you know, And I
32:36
Speaker 2: think because she was born with it, and also it's
32:39
Speaker 2: like diagnosed as a baby. To her, it's just it's
32:43
Speaker 2: just her. And I hope because again you just don't
32:49
Speaker 2: know things and change. But at the moment, she's doing
32:52
Speaker 2: fantastically and I really hope that that continues. But I
32:56
Speaker 2: know that she will tackle anything that comes to her.
33:01
Speaker 2: But yeah, so it was. It was a very roller
33:03
Speaker 2: coaster her story.
33:05
Speaker 1: Yeah, no, absolutely, And thank you so much for sharing
33:09
Speaker 1: because lots of great little details in there, and it's
33:12
Speaker 1: just sort of listening to that and sort of relating
33:15
Speaker 1: it to either stories that I've heard before or my
33:19
Speaker 1: own story as well. There's a couple of bits that
33:21
Speaker 1: that really stood out for me, one of which was
33:24
Speaker 1: the advocacy. And I think I have enormous respect for doctors, nurses,
33:34
Speaker 1: people in the medical profession have enormous respect that. I mean,
33:37
Speaker 1: God knows, you know, my life has been saved so
33:39
Speaker 1: many times by them. But I still think, you know,
33:44
Speaker 1: mother's instinct is something you know, you can't quite put
33:47
Speaker 1: your finger on it. Yeah, But at the same time,
33:51
Speaker 1: I think it is so so important. And you know,
33:54
Speaker 1: people who know my story know that, you know that
33:57
Speaker 1: happened to me as well. Yeah, my mum advocated for me.
34:01
Speaker 1: She knew something was wrong and she called the doctor
34:04
Speaker 1: out on Easter Monday, who didn't really want to come
34:06
Speaker 1: out because he wanted a day off, but he had to.
34:11
Speaker 1: And I just think, I think that's so so important
34:15
Speaker 1: that you go actually deep down, I think I think
34:19
Speaker 1: something's not quite right, and you know, people will tell you, yeah,
34:23
Speaker 1: it was fine, worry like you said, just the blockage,
34:26
Speaker 1: you know, And I think that's so so important to
34:30
Speaker 1: go actually I'm concerned here. I want I want to
34:35
Speaker 1: make sure that one hundred percent and so yeah, I
34:39
Speaker 1: think that's that's huge.
34:41
Speaker 2: But the other thing we found was was interesting was
34:46
Speaker 2: not all doctors know what Hirsbunds is. You know, it's
34:49
Speaker 2: so rare. That really surprised us. So when we went
34:52
Speaker 2: up to our surgery, so, like I said, we were
34:54
Speaker 2: at Warminster at the time, so it was a military
34:56
Speaker 2: doctor is my husband's military and doctor to top of
35:00
Speaker 2: them there, she was fantastic she went off, She researched
35:03
Speaker 2: about it. She would ring me, say how's Dorothy. When
35:06
Speaker 2: she did her first poo, she shouted down the phone.
35:11
Speaker 2: The health visitors came to see me here at home.
35:14
Speaker 2: I didn't have to go to them, you know. The
35:16
Speaker 2: support from the medical profession they were, there's been, you know,
35:21
Speaker 2: but overall they've been absolutely fantastic. And even Bath hospital
35:26
Speaker 2: we spoke to them about what had happened. They came.
35:30
Speaker 2: Midwife came to our house. Chief midwife came to my house.
35:33
Speaker 2: We spoke about what happened, and she rang me a
35:35
Speaker 2: week later and said, we've now put this into place,
35:37
Speaker 2: we're changing this. It wasn't me and James wasn't more
35:41
Speaker 2: about we were complaining and wanted to get people in trouble.
35:43
Speaker 2: That was our attention. It was more we don't want
35:47
Speaker 2: this to happen again, you know, for someone else, because
35:51
Speaker 2: it would have been much smoother for us if in
35:53
Speaker 2: that first twenty four hours they'd gone, oh she's not
35:55
Speaker 2: passing theconium, let's monitor and let's do this, and it
35:58
Speaker 2: would have been a much less panicked transition. But they so,
36:04
Speaker 2: they were incredible, you know, So everyone has been people. Yeah,
36:07
Speaker 2: it surprises me that they said, you know, we are
36:09
Speaker 2: still staying with Bristol even though we've moved we now
36:11
Speaker 2: live in Surrey, because they know Hirsbruns all right. They
36:16
Speaker 2: know Dorothy, but they know Hirsbruns. So we will always
36:19
Speaker 2: stay with them as long as we can, because we
36:24
Speaker 2: don't want to go somewhere where they don't know what
36:26
Speaker 2: Hirchbuns is.
36:27
Speaker 1: No, And I think that's also you know, I understand
36:32
Speaker 1: that not every doctor and nurse can know every single
36:35
Speaker 1: thing about every single condition, you know, especially as we
36:39
Speaker 1: know the one in five thousand, the super rare ones
36:42
Speaker 1: that you know that we are that can't know everything
36:46
Speaker 1: about everything. So the find that when the way researched
36:50
Speaker 1: said right, could be this, could be that, et cetera
36:53
Speaker 1: is excellent. So yeah, I don't don't blame anybody for
36:57
Speaker 1: not knowing a hundred percent of everything. But I think
37:01
Speaker 1: as well, you touched on one thing there when you
37:05
Speaker 1: said that you're very happy to tell Dorothy's story now,
37:09
Speaker 1: but you know five and a half years ago or
37:12
Speaker 1: five years ago was an absolute no no. But I
37:16
Speaker 1: have huge respect for anybody at any time who wants
37:21
Speaker 1: to come on and share whether it be their child story,
37:23
Speaker 1: whether it be their own story or siblings story of Hirshprunks,
37:27
Speaker 1: because I just I think it's fantastic. And I've mentioned
37:31
Speaker 1: before it took me thirty one years to share my own,
37:34
Speaker 1: so you are many many years ahead of me, So
37:40
Speaker 1: I have I have enormous respect for anyone who comes
37:44
Speaker 1: on and it's it's a fascinating story as well, because
37:48
Speaker 1: as you said, no, I know, we'll move on in
37:52
Speaker 1: a second, but you said that with Dorothy was sort
37:57
Speaker 1: of that first few years. Obviously with the most it's difficult,
38:00
Speaker 1: like for a lot of people. And how is Dorothy now?
38:06
Speaker 2: She's she's absolutely thriving. She's absolutely sorry. She's just a
38:10
Speaker 2: typical six year old child. She loves school play, she
38:14
Speaker 2: does gymnastics, rainbows, she you know, she did rugby last year.
38:19
Speaker 2: She it doesn't stop her like she doesn't because she
38:23
Speaker 2: doesn't know that it could, you know. And we've never
38:26
Speaker 2: we've never made it a negative and it doesn't have
38:28
Speaker 2: to be a negative at all. Hirch phones doesn't stop
38:32
Speaker 2: people doing anything. And I do appreciate though that we
38:36
Speaker 2: or she and we have been extremely lucky with her
38:39
Speaker 2: hirch Bunks because I do appreciate that there are people
38:43
Speaker 2: out there that haven't had it so lucky.
38:45
Speaker 1: You know.
38:45
Speaker 2: I was listening to one episode where she did go
38:49
Speaker 2: in and she did get that phone call to say
38:51
Speaker 2: it's the whole bow, you know, and that took me
38:53
Speaker 2: right back to the feeling. So I know we've been
38:57
Speaker 2: extremely lucky. But I also feel like because no now
39:01
Speaker 2: operating on her as a baby, her immune system had
39:04
Speaker 2: that chance to grow normally like it should have, which
39:11
Speaker 2: maybe you know, didn't operate till three or four would
39:14
Speaker 2: it would have been maybe a bit a bit weaker.
39:16
Speaker 2: So I think with the advances and all the surg calls,
39:19
Speaker 2: the advances and all that, it's definitely helping.
39:22
Speaker 1: Absolutely definitely. And you mentioned there about yeah, feeling very lucky.
39:29
Speaker 1: Not a lot of people who have a rare condition
39:30
Speaker 1: do feel very lucky something. Why was it me? Why
39:34
Speaker 1: was it not the other four nine hundred and ninety
39:37
Speaker 1: nine people. But I love that outlook, And that was
39:40
Speaker 1: another reason why I really wanted you on the show,
39:42
Speaker 1: was that do you have this positive outlook and this
39:47
Speaker 1: kind of like yes, Dorothy has hirshbrungs. Yes, been through
39:52
Speaker 1: all sorts. As we've mentioned, but like you said, she
39:54
Speaker 1: plays rugby, you know, and you would some people might
40:00
Speaker 1: sit down and go rugby, you know, but.
40:03
Speaker 2: I would have six five years ago. I mean, I
40:07
Speaker 2: took her to her first baby class and I was petrified,
40:10
Speaker 2: but I did it. And she, you know, has a
40:14
Speaker 2: look back since. So yeah, I get it. And like
40:17
Speaker 2: I say, when she got the diagnosis, I couldn't see
40:19
Speaker 2: her even go to school. I was go homeschooling, was
40:22
Speaker 2: going through you know, all the how do I protect her?
40:26
Speaker 2: But actually, like I say, because she had the operation,
40:30
Speaker 2: so yng, she doesn't know any and you know, all
40:32
Speaker 2: those things she had, prodding and poking and all these
40:35
Speaker 2: horrible things, people putting fingers where you don't want fingers
40:38
Speaker 2: being put she doesn't remember any of it. It's not
40:42
Speaker 2: a memory for her. So her to her hurtchbums is
40:44
Speaker 2: just something she has. It's just a part of her.
40:48
Speaker 2: Like she's got two hands, you know, it's not anything different.
40:52
Speaker 2: But she also knows that she's very special, and she is.
40:57
Speaker 2: She's she's rare. She's got her magic tummy and like
40:59
Speaker 2: I said, that's what she calls it, her magic tummy.
41:01
Speaker 2: The doctor's fixed.
41:03
Speaker 1: I love that. I love I love that praise of magic, Tommy.
41:07
Speaker 1: I think that's that's absolutely fantastic and like we, like
41:09
Speaker 1: you said before, it turned it into a positive and
41:14
Speaker 1: I think that's fantastic and it kind of it speaks
41:18
Speaker 1: to the positive attitude that you seemingly all have, which
41:21
Speaker 1: I think is is amazing. And just as we'd sort
41:26
Speaker 1: of wrapped towards the end here in terms of future
41:31
Speaker 1: for Dorothy, I know she said get a really really
41:34
Speaker 1: well at the moment, what does she want to be
41:36
Speaker 1: when she grows up?
41:38
Speaker 2: At the moment, she's really into horses, so anything to
41:42
Speaker 2: do with horses. I think it just changed. But I
41:45
Speaker 2: just I'm really positive now that she can do anything.
41:50
Speaker 2: Like I say, if i'd spoken to you five years ago,
41:53
Speaker 2: it would have been a different answer. But speaking now,
41:59
Speaker 2: I'm really happy with how she's getting on. And I
42:01
Speaker 2: do say lucky because we are lucky. She Yeah, she's
42:04
Speaker 2: got hirsbrunds, but it could have been a lot worse.
42:09
Speaker 2: And I know people have stonmas and I know they
42:11
Speaker 2: can extremely well with stovers, and again a STMA doesn't
42:14
Speaker 2: stop you doing anything, and stoner's not anything to be
42:17
Speaker 2: ashamed of at all. But I am very grateful that
42:21
Speaker 2: she didn't have to go down that road. It just
42:23
Speaker 2: made it easier for us because me and James I
42:26
Speaker 2: don't know anything about that. So I mean, one the
42:31
Speaker 2: one question I think we'll always have is why she
42:33
Speaker 2: got it. Yeah, because because there's no there's no history,
42:40
Speaker 2: and if you were going to play the you know,
42:42
Speaker 2: the game, it should have been my son because he's
42:44
Speaker 2: a boy. Do you know what I mean?
42:45
Speaker 1: Like, yeah, yeah, yeah, It's like you said previously, with
42:49
Speaker 1: so many questions and going, well, it can't be Hirshbrungs
42:52
Speaker 1: because she's a girl.
42:54
Speaker 2: Just said to us in the hospital, she's a girl.
42:57
Speaker 2: It won't be Hirsbruns. You know, one in the family's
43:00
Speaker 2: go it.
43:01
Speaker 1: Yeah. It's one thing that fascinates me is genetics, because
43:06
Speaker 1: I mean I speak to people who it runs through
43:09
Speaker 1: their family. I speak to people like myself. I mean,
43:11
Speaker 1: I don't have any history of it at all, you know,
43:14
Speaker 1: and I going back centuries, nobody had Hirschbrugs. But then
43:19
Speaker 1: some people it runs through the family. And I still
43:23
Speaker 1: don't really think there's a satisfactory adds sower that I
43:26
Speaker 1: can give or anybody else can give you.
43:28
Speaker 2: No, And I think that's another one of those the
43:29
Speaker 2: Hirschmun's mysteries, isn't it It's why does it happen? I mean, again,
43:33
Speaker 2: I speak for myself as the mum. I struggled a
43:37
Speaker 2: lot in the early days of did I do something?
43:40
Speaker 1: You know.
43:41
Speaker 2: During the pregnancy, because they say it it forms quite quickly,
43:46
Speaker 2: so you do you go down that road, you know,
43:48
Speaker 2: what did I do? Did I do something? Did I
43:51
Speaker 2: But I now know no, it wasn't anything I did,
43:54
Speaker 2: but again it was it was definitely something I battled
43:59
Speaker 2: with in those early days and it's taken. My husband
44:03
Speaker 2: has supported me through this and he's always said no,
44:05
Speaker 2: you know, he's no, it's nothing you did. So but
44:08
Speaker 2: sometimes you need to figure that out your sat. But yeah,
44:12
Speaker 2: we're fantastic support family friends. You know, they were always
44:16
Speaker 2: asking how she is. They were always supportive in the
44:19
Speaker 2: early days there when we needed them, So we are
44:24
Speaker 2: really Yeah. I know you said it's funny to say lucky,
44:27
Speaker 2: but she is one of the lucky ones in that respect.
44:31
Speaker 1: Fantastic. Thank you ever so much for sharing Dorothy's story
44:36
Speaker 1: and coming on the show. Just lastly, you know, if
44:39
Speaker 1: people want to keep up to sday with with how
44:40
Speaker 1: Dorothy's doing. I know you share on your Instagram. Where
44:45
Speaker 1: can people find you?
44:46
Speaker 2: So, yeah, I am on Instagram. I think it's Jem
44:49
Speaker 2: Underscore bogs g e M Underscore Boggs and I used
44:55
Speaker 2: to share a lot. I don't share so much anymore
44:57
Speaker 2: because she's obviously a little bit older. Yeah, but we
45:01
Speaker 2: still do do things. And I'm you know, I have
45:04
Speaker 2: a few followers and I follow people that we've met
45:07
Speaker 2: through Hirsbrungs and only through Hirschbrungs, and it's really a
45:10
Speaker 2: nice community I think to be part of. So really
45:13
Speaker 2: really happy to be on here, Tom, And I'm so
45:15
Speaker 2: glad of what you're doing because spreading the message of
45:18
Speaker 2: Hirchbrungs is wonderful.
45:20
Speaker 1: That's my pleasure. Thank you so much for coming on.
45:23
Speaker 1: Thank you, Thank you for listening to the podcast. Find
45:30
Speaker 1: us on Instagram, Tom's Underscore Hirshbrungs Underscore Podcast. Listen to
45:35
Speaker 1: previous episodes on Spotify by searching Tom's Hirshbrungs Podcast.