Latest / Tom's Hirschsprung's Podcast / Episode 126 - With Laura Rigg

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Episode 126 - With Laura Rigg · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's podcast, a space where
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Speaker 1: we talk openly about living with hirshprng's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in.
0:43
Speaker 2: Hello, and welcome to episode one hundred and twenty six
0:46
Speaker 2: of Tom's Hirshbrons podcast. I'm delighted this afternoon to be
0:50
Speaker 2: joined by Laura. Laura, welcome to the podcast.
0:53
Speaker 3: Thank you so much, and thank you so much for
0:56
Speaker 3: inviting me to share our hirshprgs story.
1:00
Speaker 2: Yeah, and what a story it is. I know, we'll
1:02
Speaker 2: get into it. We'll get into it a little bit.
1:05
Speaker 2: But yeah, this is not your typical diagnosed with hirshprungs.
1:11
Speaker 2: And then everything sort of jogs along, absolutely fine. There
1:14
Speaker 2: seems to be an awful lot to this story. So
1:18
Speaker 2: with that being said, would you like to take us
1:21
Speaker 2: sort of well back to the very beginning.
1:25
Speaker 3: Yeah, absolutely so. July twenty twenty three, I gave birth
1:31
Speaker 3: to my daughter, Harriet and had a really easy pregnancy
1:35
Speaker 3: to be fair, like it was my first pregnancy. Everything
1:37
Speaker 3: was really chill, had no issues, nothing came upon any
1:42
Speaker 3: scans that we had, There was no sign of any
1:44
Speaker 3: kind of trouble so to speak. I was very very overdue,
1:49
Speaker 3: so she did not arrive until I think eleven days
1:54
Speaker 3: after her due date, and I was in hospital five
1:58
Speaker 3: days prior to her being born because she was that
2:01
Speaker 3: stubborn that she just did not want to come out.
2:03
Speaker 3: They really tried everything and she just was having none
2:06
Speaker 3: of it, so eventually ended up in an emergency sea section.
2:11
Speaker 3: So obviously the lead up to the berth was all
2:13
Speaker 3: quite traumatic, and there was a lot going on, lots
2:15
Speaker 3: of medical interventions, and obviously when you've not had a
2:18
Speaker 3: baby before, it's just very like well, you know. But
2:22
Speaker 3: she arrived and she was gorgeous. She was tiny, but gorgeous.
2:26
Speaker 3: I think she was six pounds eight ounces, which is
2:28
Speaker 3: quite small for a very very overdue baby. But all
2:34
Speaker 3: seemed fine sort of those first few hours after birth,
2:38
Speaker 3: and then throughout the day we were having difficulty feeding her.
2:43
Speaker 3: So anytime she had knee like milk or colostrum, it
2:46
Speaker 3: just kept coming back up and it was kind of
2:48
Speaker 3: like this, like bright green color, and a few of
2:51
Speaker 3: the pediatric doctors looked at her and just said, oh,
2:54
Speaker 3: it's just mucus from the sea section. You know, she'll
2:58
Speaker 3: be fine, it's just going to clear out. And I
3:02
Speaker 3: don't really remember a lot from that day because I
3:04
Speaker 3: was so out of it. I was so tired, and
3:07
Speaker 3: I just remember during the night the midwives taking her
3:10
Speaker 3: away for a little bit and trying to get her
3:14
Speaker 3: to feed on some formula and it just wasn't happening.
3:17
Speaker 3: Anything that went in came straight back out. And she
3:21
Speaker 3: also hadn't passed any picconium at this point either. So
3:25
Speaker 3: the next day a new midwife came onto the ward
3:29
Speaker 3: hadn't seen it before. Her name was Jane, and she
3:33
Speaker 3: kind of looked at what happened overnight and she said
3:35
Speaker 3: something's not right here, like I'm not happy. And I
3:40
Speaker 3: overheard her actually on the phone speaking to I guess
3:43
Speaker 3: the pediatric registra or something, saying you will send a
3:46
Speaker 3: different doctor to come and look at this baby because
3:48
Speaker 3: I'm not happy with the one that has looked at
3:50
Speaker 3: her before. So yeah, it was all a bit of
3:53
Speaker 3: a whirlwind. A different doctor came down and then immediately
3:59
Speaker 3: took her over to the Special Care Baby unit. And
4:04
Speaker 3: so this was at York Hoster by the way, where
4:07
Speaker 3: she was born, and so they don't have a nick
4:09
Speaker 3: you at or they just have the Special Care Baby unit.
4:14
Speaker 3: And they took her and we had no idea what
4:16
Speaker 3: was going on, and we waited for what felt like hours,
4:20
Speaker 3: and eventually they got wheeled over to a special Care
4:25
Speaker 3: Baby unit and they said, there was something wrong with
4:29
Speaker 3: babies intestines. We're not too sure what it is, but
4:33
Speaker 3: we can't treat it here. So Harriet was loaded up
4:38
Speaker 3: into this massive kind of like I don't even know
4:41
Speaker 3: what you would call it. It was. It was like
4:44
Speaker 3: a bed, but it was like a big kind of
4:45
Speaker 3: like machine almost, and they popped her in there for
4:49
Speaker 3: transport and took her over to Leeds General Infirmary. Now
4:55
Speaker 3: at this point, I'm, you know, thirty six hours on
4:59
Speaker 3: from emergency section, not very mobile, not feeling great. But
5:05
Speaker 3: I said, there's no way I'm staying in York. I'm
5:07
Speaker 3: going to Leeds, you know, where my baby is. And
5:09
Speaker 3: the middle drives are a bit like, we don't think
5:11
Speaker 3: you're well enough to go, and I was like, I
5:14
Speaker 3: don't care I'm going, and I think they tried to
5:18
Speaker 3: do every test they could to kind of keep me there,
5:20
Speaker 3: but luckily everything came back where they kind of said, well,
5:24
Speaker 3: you know, we can discharge you, but you know, you
5:28
Speaker 3: need to take it easy. So this was sort of
5:32
Speaker 3: like the evening by that point, and my husband drove
5:36
Speaker 3: us over to Leeds. So from York that's about a
5:38
Speaker 3: forty minute drive. It felt like the longest drive in
5:41
Speaker 3: the world. After having major surgery. We got over to
5:46
Speaker 3: LGI found Harriet. She was on the surgical newborn ward
5:53
Speaker 3: and we got there and they said, look, we're not
5:55
Speaker 3: sure what it is, but we think it could be
5:58
Speaker 3: this thing called Hirshbrus disease. Me and my husband are like,
6:02
Speaker 3: what is that. You know, we've never heard of it.
6:05
Speaker 3: You know, it's not in our family, it's not something
6:09
Speaker 3: that we're familiar with. And I think that night, I
6:13
Speaker 3: think just all the emotions and the adrenaline, and because
6:17
Speaker 3: it was nighttime, we just didn't have a chance to
6:19
Speaker 3: speak to anybody about it or to understand, you know,
6:22
Speaker 3: what hirshbrums was. And I just remember they put us
6:26
Speaker 3: in this little side room just off the ward, and
6:30
Speaker 3: my husband and I we just cried because we just
6:32
Speaker 3: you know, we were so scared. We thought, you know,
6:36
Speaker 3: were we going to lose her. We just had no
6:38
Speaker 3: idea what was about to begin. Because that really was
6:43
Speaker 3: just the very start of it. And yeah, she was
6:46
Speaker 3: kept in LGI for we think about two and a
6:49
Speaker 3: half weeks. She was put on bow washouts to clear
6:53
Speaker 3: the stool out from her bowl, and basically it was
6:56
Speaker 3: just a case of getting her feeding and comfort so
7:00
Speaker 3: that she could come home with us and we could
7:02
Speaker 3: continue to do the bow washouts from home. So yeah,
7:07
Speaker 3: so that was just that's just the start.
7:09
Speaker 2: Yeah, I mean that sounds again, I can't imagine how
7:17
Speaker 2: people feel when you go in then, Yes, you said
7:21
Speaker 2: Harriet was slightly overdue, but we go in and you
7:25
Speaker 2: sort of expect a normal quote unquote, you know, having
7:29
Speaker 2: had a normal pregnancy, and you expected then for just
7:35
Speaker 2: the entire world to be to the top side down.
7:38
Speaker 2: I mean, I can't imagine how that must feel.
7:42
Speaker 3: Absolutely, and you know, it really did feel like the
7:44
Speaker 3: whole thing just had turned completely upside down. And I
7:49
Speaker 3: think as well, with kind of very new diagnoses, I
7:53
Speaker 3: think surgeants are quite reluctant to kind of have those
7:56
Speaker 3: realistic conversations with you at that point. So I remember
8:00
Speaker 3: kind of, you know, having in my head that oh, well,
8:02
Speaker 3: she would just have a bit of surgery and you know,
8:05
Speaker 3: everything would be hunky dory. And obviously you know that
8:09
Speaker 3: that wasn't the case. And I know now from you know,
8:11
Speaker 3: experience and seeing other people's stories, that that isn't very
8:16
Speaker 3: often the case. That you know, it's surgery and then
8:19
Speaker 3: you know, you know, everything's normal. And I don't like
8:21
Speaker 3: to use that word, but that's kind of you know,
8:23
Speaker 3: where we're at. So yeah, so we you know, we
8:27
Speaker 3: kind of went home and adjusted to life with bow washouts.
8:33
Speaker 3: They I mean they were okay, she coached with them,
8:36
Speaker 3: Well we coach with them. Okay, it's you know, weird
8:39
Speaker 3: thing to do, but you just kind of get used
8:42
Speaker 3: to it and that just becomes what's normal for you.
8:46
Speaker 3: But it did restrict us quite a lot. You know
8:48
Speaker 3: that we have to kind of plan you know, if
8:50
Speaker 3: we went anywhere, it would have to be around washouts.
8:53
Speaker 3: We couldn't you know, let other people look after her
8:56
Speaker 3: for any sort of extended period because they weren't trained
8:59
Speaker 3: in washout. So and it felt like quite an isolating experience,
9:03
Speaker 3: because how do you explain to your friends that have
9:07
Speaker 3: babies that this is something that you're doing. And I
9:12
Speaker 3: think both of us at the time probably didn't talk
9:15
Speaker 3: about it a lot because we didn't know how, and
9:19
Speaker 3: I think people as well don't really know how to
9:23
Speaker 3: talk about it without feeling awkward. So yeah, I think
9:27
Speaker 3: it was quite isolating in those early days, just overwhelming
9:32
Speaker 3: with all of a sudden having to a care for
9:35
Speaker 3: a child just generly, and then be all these additional
9:39
Speaker 3: things that you had to do, you know, that made
9:42
Speaker 3: it even more complex. But we continued with the washouts
9:48
Speaker 3: until Harriet was about three months old, and one day
9:52
Speaker 3: the washouts just stopped working. We were getting no results
9:55
Speaker 3: from the bow washouts, no store was coming out, no guests.
9:59
Speaker 3: So we rang Stone nurses at LGI. They said to
10:03
Speaker 3: bring her in they'll have a little look, and basically
10:07
Speaker 3: Harriet was just submitted until they could get a result
10:10
Speaker 3: from the washouts. But I think we were in for
10:13
Speaker 3: about a week trying the washouts with the Stone nurses,
10:16
Speaker 3: with the surgeons. They're trying to figure out what might
10:19
Speaker 3: be going on, and you know, they couldn't figure it out.
10:24
Speaker 3: They thought it could be Entricholitis, but that there just
10:26
Speaker 3: wasn't enough kind of evidence to suggest what was going on.
10:30
Speaker 3: But Harriet was getting more poorly, obviously not being able
10:34
Speaker 3: to clear everything out, and so they scheduled her for
10:38
Speaker 3: an iliostomy, and then the morning that she was due
10:43
Speaker 3: to have the iliostomy, she tested positive for COVID sir,
10:50
Speaker 3: so they had to cancel the surgery, obviously with her
10:52
Speaker 3: being such a small baby, and the anstis was not
10:55
Speaker 3: prepared to continue, which is obviously the right decision, but
10:59
Speaker 3: at the time we were just we've got ourselves so
11:01
Speaker 3: geared up, you know, for preparing for the surgery, and
11:05
Speaker 3: then you know it wasn't going to happen. And I
11:07
Speaker 3: also caught COVID at the same time, so we got
11:11
Speaker 3: isolated in this tiny little side room on the ward,
11:16
Speaker 3: just me and Harriet both had COVID, both feeling absolutely awful.
11:20
Speaker 3: It was a horrible experience and definitely don't recommend it.
11:25
Speaker 3: But by some miracle, the washouts started working again, so
11:30
Speaker 3: I think the plan was to kind of delay the
11:32
Speaker 3: surgery until she was well, but it got to a
11:35
Speaker 3: point where we were back to regular washouts. The outcomes
11:39
Speaker 3: was expected and they were quite happy for her to
11:41
Speaker 3: be discharged back home, and we carried on as normal
11:46
Speaker 3: for another few months, and then at six months she
11:50
Speaker 3: got very unwell again and we took her in and
11:55
Speaker 3: the surgeon just said, we need to put her into
11:58
Speaker 3: emergency surgery because you know, she's very sick, and it
12:01
Speaker 3: was entricolitis, and it, you know, it just makes the
12:05
Speaker 3: kids so unwell. And their best course of action was that,
12:09
Speaker 3: you know, to kind of get the iliostomy done now
12:14
Speaker 3: to prevent this kind of happening again. So she had
12:17
Speaker 3: the surgery and she did really well. She recovered really quickly.
12:21
Speaker 3: I think we were admitted and discharged within about seven
12:25
Speaker 3: days so, and she was an absolute trooper. And we
12:29
Speaker 3: kind of noticed as her parents that once she'd had
12:32
Speaker 3: that surgery, she actually seemed a lot brighter. She just
12:35
Speaker 3: looked healthier. So I think, you know, I still stand
12:39
Speaker 3: by it. It was the best thing that I think
12:41
Speaker 3: could have happened for Harriet at that time, and I
12:44
Speaker 3: think it was the right thing to do just in
12:47
Speaker 3: terms of getting her to a point where she could
12:49
Speaker 3: be be well, because these recurrent entricolitis episodes were delaying
12:53
Speaker 3: her having a pull through surgery, which is kind of
12:57
Speaker 3: what the goal that we were always working towards was.
13:01
Speaker 2: Yeah, most definitely. And when the entricolitis happened a second time,
13:08
Speaker 2: did you recognize the signs earlier at that time?
13:13
Speaker 3: Honestly no. And I think entercolitis is so tricky because
13:19
Speaker 3: even the medical professionals themselves can't accurately diagnose it. They
13:24
Speaker 3: just kind of go on best guests. So they'll look
13:27
Speaker 3: at the x rays, they'll look at you know, blood cultures,
13:30
Speaker 3: and they'll say it's likely entricolitis, but you know it,
13:34
Speaker 3: every child presents differently as well. So Harriet doesn't tend
13:37
Speaker 3: to get a temperature. She's never been a child that
13:40
Speaker 3: gets temperatures. But you know, we we spot science like
13:45
Speaker 3: the vomiting that's always one that she gets. And now
13:48
Speaker 3: that she has the IELs to me, you know, the
13:50
Speaker 3: kind of watery output, those kind of are the key
13:52
Speaker 3: indicators that something's not quite right. But then you know,
13:55
Speaker 3: those are also the symptoms of so many other conditions
14:00
Speaker 3: and illnesses for children, so it's really difficult to know
14:03
Speaker 3: what you're dealing with. So we always just kind of
14:06
Speaker 3: act cautiously and as soon as there's a sign of
14:10
Speaker 3: something not being quite right. You know, we always contact
14:13
Speaker 3: the hospital, the stonin urses get some advice and generally
14:17
Speaker 3: they say to bring her in. Definitely.
14:20
Speaker 2: Yeah, I mean it's a it's such a difficult condition,
14:25
Speaker 2: Like you say, it's such a difficult condition to diagnose
14:28
Speaker 2: because it could be so many other things. Yeah, so
14:31
Speaker 2: many other things. And I guess one point that we'll
14:36
Speaker 2: touch on that I can't remember if we mentioned yet already,
14:40
Speaker 2: but that Harriet is total colonic her struts. That wasn't
14:45
Speaker 2: necessarily what they thought it was going to be originally,
14:49
Speaker 2: is that right.
14:50
Speaker 3: Yeah, So we didn't find out that she was total
14:54
Speaker 3: chronic until she was about nine months old, where she
14:58
Speaker 3: finally got to appoint the last me was working super
15:01
Speaker 3: well for her. She was really healthy, really happy. She
15:04
Speaker 3: put on quite a bit of weight as well, and
15:06
Speaker 3: that was something that they'd always been a bit kind
15:08
Speaker 3: of cagey about. She was a small baby anyway, and
15:11
Speaker 3: she was slow to kind of grow any weight. But
15:15
Speaker 3: she got to the point where she was really healthy
15:17
Speaker 3: and they said, okay, let's do the pull through. Let's
15:21
Speaker 3: see how it's going. And they took her down for
15:26
Speaker 3: surgery and during the surgery they biopsied her colon and
15:32
Speaker 3: the way they do it at Algi is really weird
15:35
Speaker 3: because they have to take the biopsy, put it in
15:38
Speaker 3: a taxi and send it over to Saint James's Hospital
15:42
Speaker 3: to their lab while she's like open for surgery and
15:47
Speaker 3: wait for them to call back with the results. So
15:48
Speaker 3: this went on for quite some time because they were
15:51
Speaker 3: back and forth between the two hospitals, and you know,
15:55
Speaker 3: they said, it's going to be a long surgery. Just
15:57
Speaker 3: you know, take some time afterward, go out for the
15:59
Speaker 3: day so my husband to die. You know. Leads to
16:02
Speaker 3: a great city. We love it there, and we just
16:05
Speaker 3: sort of went on a bit of like a coffee
16:06
Speaker 3: shop tour. There's loads of good coffee shops. Obviously we
16:10
Speaker 3: were so anxious, so we couldn't really enjoy ourselves, but
16:12
Speaker 3: we were just kind of like hopping around these coffee
16:14
Speaker 3: shops for a couple of hours and then they called us,
16:17
Speaker 3: I think about lunchtime, and they said, we have stopped
16:21
Speaker 3: the surgery. Can you come back to the hospital and
16:24
Speaker 3: we'll explain what's going on. They said, Harry, it's asolutely fine,
16:27
Speaker 3: but we can't continue. So of course, obviously our minds
16:31
Speaker 3: are just we're just thinking what on earth has happened?
16:34
Speaker 3: Because I don't think it ever occurred to us at
16:36
Speaker 3: that point that they wouldn't be able to do the
16:39
Speaker 3: pull through surgery. So we got back. Surgeon set us
16:44
Speaker 3: down and basically said, look, we have biopsied pretty much
16:49
Speaker 3: all her colon except for five centimeters, and none of
16:52
Speaker 3: it is viable. It's a ganglionic. And he said, I
16:56
Speaker 3: think we are looking at you know, total chlonic hirshbrings disease.
17:00
Speaker 3: And he said that wasn't what we expected because she'd
17:03
Speaker 3: had successful washouts for the most part, you know, for
17:07
Speaker 3: six months before the ilostomy, So it was kind of
17:11
Speaker 3: a shock to everybody. But I guess, you know, you
17:14
Speaker 3: don't know what you're dealing with until you get in
17:17
Speaker 3: there and you the biopsies and see what happened. So
17:21
Speaker 3: that really kind of flawed us because we thought, well, well,
17:24
Speaker 3: what happens now? Where does that? Where does that leave her?
17:29
Speaker 3: And basically the plans then to just keep the iliostomy
17:32
Speaker 3: as it is, work on getting the output to be
17:36
Speaker 3: a lot thicker so that when they revisited pull through
17:40
Speaker 3: again a little bit later on the when she has
17:45
Speaker 3: the pull through astona reverse the stool that comes out
17:48
Speaker 3: is going to be a little bit thicker and isn't
17:51
Speaker 3: going to cause as many issues sort of like with
17:53
Speaker 3: the you know, the nappy rash and things like that.
17:56
Speaker 3: So that was kind of where we left things when
17:59
Speaker 3: she was nine months old, and then I would say
18:02
Speaker 3: the year after that I could only describe as just
18:05
Speaker 3: absolute hell. We had so many issues initially with the
18:12
Speaker 3: iligostomy and leaks and not being able to find the
18:15
Speaker 3: right products and just really struggling. You know, there'd be
18:20
Speaker 3: days where we would be doing five or six bag
18:22
Speaker 3: changes a day and it would you know, you'd put
18:26
Speaker 3: one on and then half an hour later it would
18:28
Speaker 3: it would go again, and you just think, oh, my gosh,
18:30
Speaker 3: what are we doing wrong? Why is it not working?
18:33
Speaker 3: And obviously when you're sort of you know, nine months
18:35
Speaker 3: old babies are you know, a lot less docile than
18:39
Speaker 3: newborn babies, So that added an extra layer of kind
18:42
Speaker 3: of obsessed to it. And then, pretty much like clockwork,
18:47
Speaker 3: for the next year, every three months Harriet got entricolitis,
18:51
Speaker 3: even with the stoma, and well they say entricolitis, We
18:57
Speaker 3: don't know, it could have been tummy bugs. It's it's
19:00
Speaker 3: so hard to kind of tell exactly what they're dealing with.
19:02
Speaker 3: But she's always been treated as somebody that has kind
19:06
Speaker 3: of chronic and chocolitis, and yeah, pretty much you could
19:10
Speaker 3: set your watch to it. You know, it would be
19:12
Speaker 3: three months and we'd be back and again vomitsying, the diarrhea,
19:16
Speaker 3: et cetera. There was one time October twenty twenty four
19:21
Speaker 3: where she did have a tummy bug, and we know
19:23
Speaker 3: that because the rest of us caught it. Okay, well,
19:28
Speaker 3: so she was sick in hospital. I was with her
19:31
Speaker 3: and got sick myself. I just have a memory of
19:35
Speaker 3: lying on you know, like the little like pull out
19:38
Speaker 3: chair beds that they have in the hospital, lying on
19:41
Speaker 3: their feeling absolutely awful and not being able to get up,
19:45
Speaker 3: while a bunch of nurses were trying to sort Harriet's
19:47
Speaker 3: canular out because she'd pulled it out, and you just think, oh,
19:50
Speaker 3: my gosh, like what even is my life that this
19:52
Speaker 3: is happening. And the cherry on top of the cake
19:55
Speaker 3: was that we were actually trying to move house at
19:56
Speaker 3: this point, so we were really catering to Tea Side,
20:00
Speaker 3: So we were packing all our stuff up in York
20:02
Speaker 3: relocating to Teesside. My husband got sick so had to
20:06
Speaker 3: pack up the entire house by himself because nobody could
20:08
Speaker 3: help him because obviously they would catch, you know, the bug.
20:13
Speaker 3: And it is one of those things. I look back
20:15
Speaker 3: at it now and obviously I can laugh, but you
20:16
Speaker 3: just think, how did we get through that? Because you know,
20:19
Speaker 3: house moves are stressful at the best of times, but
20:21
Speaker 3: then you know you've got a Todler in hospital, everybody
20:24
Speaker 3: in the family's sick, nobody can help you pack your
20:27
Speaker 3: house up, and obviously you've got to move by a
20:29
Speaker 3: certain date. There's no extending it. So yeah, it was
20:34
Speaker 3: just total nightmare. That was probably like the worst hospital
20:37
Speaker 3: emission that we've had. And also Harriet was really really
20:41
Speaker 3: unwell at that point, to the point where she actually
20:44
Speaker 3: ended up going on TPN because she lost so much
20:48
Speaker 3: weight from being poorly that they had to get her
20:52
Speaker 3: onto the total parental nutrition through a pit line. So
20:58
Speaker 3: that was another surgery that she had to have, going
21:02
Speaker 3: under the general aesthetic to have the pick line cafeter inserted.
21:08
Speaker 3: And again that was another kind of thing that we
21:10
Speaker 3: didn't really know about, So we didn't know anything about
21:12
Speaker 3: pick lines or about TPN and how that worked. So
21:18
Speaker 3: it's like all these interventions that she's kind of had
21:20
Speaker 3: throughout her journey. I mean it's great in some ways.
21:24
Speaker 3: I feel like we've learned a lot of lessons, but
21:27
Speaker 3: it's also a lot for you know, a child she
21:30
Speaker 3: wasn't even too at this point, you know, to go
21:32
Speaker 3: through and that that can be quite hard, sort of
21:35
Speaker 3: remembering all that and thinking about, you know, the pain
21:38
Speaker 3: that she must have been in but not being able
21:41
Speaker 3: to communicate it and for us as parents being able
21:44
Speaker 3: to do very little about it. Yeah, that's like really
21:48
Speaker 3: really hard.
21:49
Speaker 2: Yeah, yeah, I can imagine, Sorry that I can imagine.
21:53
Speaker 2: That's excuse big, I can imagine. That's incredibly tough because
21:58
Speaker 2: you're almost you got both hands tied together. You can't
22:02
Speaker 2: you can't can't do it. You can't do a great deal.
22:05
Speaker 2: Obviously you try and do like everything you can, but
22:09
Speaker 2: it must be Yeah, it must be incredibly hard. But
22:13
Speaker 2: on the subject that you just said about the whole
22:16
Speaker 2: moving house and having Harriet in hospital and sort of
22:23
Speaker 2: I hear this from a lot of parents who say, well,
22:25
Speaker 2: I have no idea how we got through it, Like
22:27
Speaker 2: I just you know, when you think of obstacles in
22:32
Speaker 2: life and do you think, well, how on earth did
22:34
Speaker 2: we get through it? Sometimes it's one of those things
22:38
Speaker 2: where actually you're a lot stronger than maybe you thought
22:40
Speaker 2: you were at the beginning, And it's it's one of
22:45
Speaker 2: those where maybe maybe like today, when you look back
22:49
Speaker 2: at it and think, actually, how did we do that?
22:52
Speaker 2: But maybe at the time it was just well we'll
22:55
Speaker 2: just do X, Y Z Exactly.
22:58
Speaker 3: Yeah, I think it was. I think think I think
23:00
Speaker 3: as a parent anyway, you get this kind of new
23:03
Speaker 3: foundability to just push through things. And then obviously when
23:07
Speaker 3: you kind of add medical complexities on top of that,
23:10
Speaker 3: you know, you do kind of build this resilience and
23:13
Speaker 3: this ability to weather life storms. And you know, in
23:20
Speaker 3: some ways, I'm almost grateful to have had this experience
23:24
Speaker 3: because you know, it has made me a much stronger person,
23:29
Speaker 3: and you know, I'm seeing it now in kind of
23:33
Speaker 3: the things that I'm doing in my life. It's given
23:35
Speaker 3: me a lot of strength. So for example, I do
23:38
Speaker 3: I work for a university and I do a bit
23:40
Speaker 3: of work with their healthcare team, and I do presentations
23:44
Speaker 3: about Harriet and talk about Hirshbring's disease. And you know,
23:48
Speaker 3: a few years ago, I would never have been able
23:50
Speaker 3: to stand up in front of you know, thirty or
23:52
Speaker 3: fifty people and deliver a presentation. And now I can
23:56
Speaker 3: do that. So it's all these little ways in which
23:58
Speaker 3: that journey has kind of, you know, strengthened, you know,
24:02
Speaker 3: myself and the husband, and I mean, Harriet is the
24:06
Speaker 3: strongest of us all because I have to say, nothing
24:09
Speaker 3: bothers that girl at all. She just gets on with life.
24:13
Speaker 3: She has the best life ever and has so much fun.
24:17
Speaker 3: And I really think that, you know, if you didn't
24:20
Speaker 3: know that she had hirshprings, if you didn't know that
24:21
Speaker 3: she had the ideostomy, you wouldn't know a thing because
24:25
Speaker 3: she's just so full of energy, full of life. And
24:28
Speaker 3: we are so fortunate that that is our experience of
24:32
Speaker 3: the day to day because I know that for so
24:34
Speaker 3: many families that live with hirshprings, and that is not
24:38
Speaker 3: always the case. So while we've had a rough ride
24:41
Speaker 3: of things in terms of hospital emissions and sickness, bugs
24:45
Speaker 3: and that sort of thing, you know, we are very
24:47
Speaker 3: fortunate that our day to day life is at the
24:50
Speaker 3: moment much more settled.
24:52
Speaker 2: Yeah. Yeah, that's really really good to hear. And like
24:55
Speaker 2: you said, you end up being a lot stronger than
24:57
Speaker 2: you you think you are, and it's great to hear
25:00
Speaker 2: as well that you're that you've done presentations, talked to
25:05
Speaker 2: various healthcare teams, which I think is absolutely fantastic because above,
25:10
Speaker 2: above everything else, it get us more awareness out there.
25:14
Speaker 2: I mean, you know, again, like you talk to a
25:16
Speaker 2: lot of healthcare professionals and they can't know everything about everything,
25:20
Speaker 2: of course, but there's a lot that still have no
25:23
Speaker 2: idea what I mean, if if you said the term
25:25
Speaker 2: Hirschbrungk's disease, it probably wouldn't even know what part of
25:27
Speaker 2: the body it would be exactly.
25:30
Speaker 3: So yeah, we see that all the time. And for example,
25:34
Speaker 3: one of our local hospitals is James Cook Hospital in Middlesbrough,
25:37
Speaker 3: which is quite a big hospital and you know it
25:41
Speaker 3: was quite a specialist hospital, but the pediatric stuff there
25:45
Speaker 3: the couple of times where Harriet has had to go,
25:47
Speaker 3: usually for things that aren't Hirschwilms related, they have no
25:51
Speaker 3: idea what Hirshbranks is. They don't even know anything about stomacare.
25:55
Speaker 3: It's you know, it's very much kind of certainly, Mike Serits,
26:00
Speaker 3: I feel like it is really the children's hospitals, especially
26:03
Speaker 3: children's hospitals, that are the only places that are equipped
26:07
Speaker 3: to kind of deal with hirshprings and everything that comes
26:10
Speaker 3: under that umbrella, you know. And for some people we're
26:15
Speaker 3: quite lucky leads. For us, we're still under leads, even
26:18
Speaker 3: though we live in Middlesbrough. But for us it's about
26:22
Speaker 3: I don't know, an hour and a quarter in the car.
26:24
Speaker 3: Some people, you know, their nearest children's hospital is one
26:27
Speaker 3: hundred miles away or you know, one hundred and fifty
26:29
Speaker 3: miles away, and to be able to get the care
26:31
Speaker 3: that they need, you know, it's so much more complicated
26:35
Speaker 3: once you add distance as a factor. So it blows
26:39
Speaker 3: my mind a little bit that, you know, this is
26:41
Speaker 3: obviously you know, hirshprings is quite rare, but it's not
26:44
Speaker 3: as rare as other kind of medical conditions that seem
26:48
Speaker 3: to be. You know, people have a lot of knowledge
26:50
Speaker 3: of and understanding of, so I think being able to
26:54
Speaker 3: raise awareness about it and talk about it, I think
26:57
Speaker 3: is really important.
26:59
Speaker 2: Yeah, most definitely. I mean it's just my own experience
27:02
Speaker 2: in terms of distance. I mean I live in Suffolk
27:06
Speaker 2: and by children's hospital that I went to it was
27:09
Speaker 2: great Ormond Street in London, which is which is fairly
27:12
Speaker 2: far away even on the train and going there once.
27:16
Speaker 2: They're every three months six months throughout my spodhood. It's ladies,
27:22
Speaker 2: you know, a fair old distance and there are people
27:23
Speaker 2: who travel a lot further, a lot further because you
27:28
Speaker 2: need that that specialist care and you need those well,
27:34
Speaker 2: you need those specialists, you know, the people that know
27:36
Speaker 2: you and the people who know how to treat you.
27:38
Speaker 2: And I think that's that's really important. And and just
27:41
Speaker 2: on the subject of awareness as well, I know you're
27:46
Speaker 2: also a big part of a new charity or going
27:50
Speaker 2: to be charity soon I think, not quite a charity yet,
27:54
Speaker 2: going to be a charity suit of Hashburgs Disease UK.
28:00
Speaker 2: In terms of your kind of involvement and role within there,
28:04
Speaker 2: what what do you do?
28:07
Speaker 3: So I'm one of the trustees and we work with
28:11
Speaker 3: our founder and Regina and at the minute we're still
28:16
Speaker 3: trying to kind of figure out what we can do
28:19
Speaker 3: and I guess what we would like to do. So
28:24
Speaker 3: for me, the kind of long term goal I think
28:26
Speaker 3: has always been about creating a network of Hirshpring's families.
28:32
Speaker 3: Where I live in the northeast that doesn't seem to
28:35
Speaker 3: be a great deal going on. So I know in
28:38
Speaker 3: some areas there's a bit more of a community, but
28:41
Speaker 3: in others there really isn't. I do think a lot
28:44
Speaker 3: of it is very dependent on where you live. For example,
28:46
Speaker 3: if you live sort of like Liverpool Way and you're
28:48
Speaker 3: linked in with older Hay Hospital, there's probably a bit
28:51
Speaker 3: more going on for you than if you're based, you know,
28:54
Speaker 3: up in Newcastle or Middlesbrough like I am. So the
28:57
Speaker 3: long term for me would be to be able to
29:00
Speaker 3: kind of facilitate building those networks, working with the hospitals,
29:03
Speaker 3: the universities, tying everything in and being able to create
29:07
Speaker 3: these kind of branches across the UK to support families.
29:12
Speaker 3: I think it's a very lonely experience going through the
29:18
Speaker 3: hirshbrng's journey, and I think, you know, at the time
29:22
Speaker 3: when we were kind of going through it initially knowing
29:26
Speaker 3: that there was a place that I could go to,
29:28
Speaker 3: even if it was just a forum or you know,
29:31
Speaker 3: an online website where other people had had this experience
29:37
Speaker 3: and you could kind of see people through different stages
29:39
Speaker 3: of it. So people that have babies with hirshbrongs, people
29:42
Speaker 3: that have teenagers and then adults with Hirshbrung's, you know,
29:46
Speaker 3: kind of seeing how that journey can look for different people.
29:50
Speaker 3: I think that probably would have helped us a lot
29:53
Speaker 3: in terms of coming to terms with that diagnosis and
29:58
Speaker 3: understanding what that means. So that is kind of for
30:02
Speaker 3: me a big thing. And I think as well, having
30:04
Speaker 3: a place for parents to talk about the challenges of
30:10
Speaker 3: parenting a child with Hirshbrungs. You know, I think we're
30:15
Speaker 3: sometimes you know, generally as parents to say that, you know,
30:20
Speaker 3: afraid to say that we're struggling and that things are
30:22
Speaker 3: really hard. And when you know, for example, I'm in
30:26
Speaker 3: like a WhatsApp group with a bunch of mums and
30:30
Speaker 3: you know, all their kids, thankfully are very healthy and happy,
30:35
Speaker 3: and then you know, when I'm having a sort of
30:37
Speaker 3: like difficulty with Harriet Hirshbrung's or something that's happening, it's
30:40
Speaker 3: quite hard for me to kind of talk about it
30:43
Speaker 3: because I know they can't understand, and I don't expect
30:47
Speaker 3: them to understand, but there isn't really anywhere else I
30:50
Speaker 3: can kind of get that out there, So, you know,
30:54
Speaker 3: I think being able to connect with other people to
30:59
Speaker 3: know that not alone. I think that is a really
31:02
Speaker 3: really important thing and I would really like to be
31:04
Speaker 3: a big part of kind of building that up, you know,
31:08
Speaker 3: in future, and also for you know, children today that
31:12
Speaker 3: have Hirshbruings, for them to be able to build networks
31:14
Speaker 3: and to meet people. Obviously, we're very lucky in this
31:18
Speaker 3: day and age that we have the Internet, social media,
31:21
Speaker 3: it's easier than ever to connect with people all over
31:23
Speaker 3: the world. But I think having Hirshbrings is the UK
31:29
Speaker 3: is kind of like a central hub for that, you know,
31:31
Speaker 3: people can find exactly what it is that looking for
31:34
Speaker 3: just in one place. Yeah.
31:37
Speaker 2: Absolutely, and especially with being UK centric as well, because
31:41
Speaker 2: there are certain things of the UK system that are
31:45
Speaker 2: excuse me, having interview people in South Africa, Canada, Jia, America, etcetera.
31:54
Speaker 2: The healthcare system is completely different wherever you go. Think
32:00
Speaker 2: something that is is UK centric that you can talk
32:06
Speaker 2: to people within, I think will be absolutely fantastic. Really
32:11
Speaker 2: really really looking forward to seeing seeing how that progresses.
32:16
Speaker 2: And as we sit here just now, we'll just received
32:20
Speaker 2: my head little Hirsprung's card, my little key ring as well,
32:24
Speaker 2: so those came very properly in the post so yeah, no,
32:28
Speaker 2: it sounds. It sounds fantastic. And also of the subject
32:35
Speaker 2: of being able to talk to other people who have HUSH,
32:39
Speaker 2: whether whether they have Hirshprungs or whether they are parents
32:42
Speaker 2: of a child with Sprungs, I think that leads us
32:45
Speaker 2: on to sort of parental mental health, which I think
32:50
Speaker 2: is still an under under explored topic. And I think,
32:59
Speaker 2: having discussed this with a few people, not many, but
33:02
Speaker 2: a few people, I think it's something that is I
33:08
Speaker 2: know that you want to talk about, and I think
33:10
Speaker 2: it's something that is incredibly important when it comes to
33:15
Speaker 2: not not just hershbon, having a child with a chronic condition.
33:20
Speaker 2: You know, like you said, you're you're you have a
33:23
Speaker 2: child diagnosed with a condition that nobody's ever heard of,
33:25
Speaker 2: let's be honest, and it's and suddenly you go, well, what, what,
33:32
Speaker 2: what on earth could my child do? Are they going
33:34
Speaker 2: to be able to walk and talk and go to
33:36
Speaker 2: school and you know, play sports or anything like that.
33:41
Speaker 2: I guess would you like to talk a little bit
33:43
Speaker 2: about your experience in that field.
33:47
Speaker 3: Absolutely. I mean I've always kind of said with our experience,
33:51
Speaker 3: I'm an open book insofar as how I feel and
33:55
Speaker 3: what my experience of things is. But obviously I can't
33:58
Speaker 3: speak for Harriet, and I kind of don't want to
34:01
Speaker 3: kind of put things out there that, you know, she
34:05
Speaker 3: can't really defend herself against, especially she's a child. I
34:09
Speaker 3: think one of the things that's very difficult to talk
34:11
Speaker 3: about when it comes to the mental health of a
34:15
Speaker 3: parent of a child that has a chronic condition is
34:18
Speaker 3: that you almost feel like you can't really talk about
34:20
Speaker 3: it because it's your child that has the problem. You know,
34:24
Speaker 3: it's your child that is having the surgeries. It's your
34:27
Speaker 3: child that is having the hundreds of canular attempts and
34:31
Speaker 3: all those sorts of things. So you kind of feel
34:35
Speaker 3: a bit like, well, you know, I can't make it
34:38
Speaker 3: about me, and I can't fall apart now because you
34:42
Speaker 3: know it's not me that has the condition. But I
34:45
Speaker 3: think it takes such a toll because it's not just
34:50
Speaker 3: you know, the diagnosis, it's everything that comes with it.
34:53
Speaker 3: It's the mental load of it. It's knowing the prescriptions,
34:57
Speaker 3: ordering the prescriptions, keeping track of hospital appointments, knowing you
35:01
Speaker 3: know when your child is in well and what you
35:03
Speaker 3: need to do, always having a backpack to go to hospital.
35:07
Speaker 3: It's all these things that you just kind of you
35:10
Speaker 3: just do them because you have to, you have no choice,
35:15
Speaker 3: But it's still there. You're always thinking about what's the
35:18
Speaker 3: next thing going to be, and that is huge for
35:22
Speaker 3: anybody to take on. And it's not always going to
35:26
Speaker 3: be easy, you know. And I think when you're in
35:29
Speaker 3: situations where your child in hospital, you're not sleeping, you're
35:33
Speaker 3: not eating very well, you know, you're not really being
35:36
Speaker 3: able to look after yourself. I think you absolutely are
35:38
Speaker 3: susceptible to experiencing poor mental health, and I think that
35:43
Speaker 3: it's not always picked up on or recognized or in
35:47
Speaker 3: those situations, you know, it can't really be focused on
35:50
Speaker 3: because obviously the priority is looking after the child that
35:53
Speaker 3: is in well. But I've definitely a couple of times
35:56
Speaker 3: when we've been admitted experienced some really difficult mental health issues.
36:02
Speaker 3: I was very lucky in that LGI have something called
36:06
Speaker 3: a gastro psychologist that we work with who is so
36:10
Speaker 3: lovely and she kind of supports us as a family
36:15
Speaker 3: and talks about what we're experiencing, how we feel about it,
36:21
Speaker 3: and what we can do to kind of, you know,
36:23
Speaker 3: make the situation better. But I'm very acutely aware that
36:27
Speaker 3: that's not everyone's experience, and I think a lot of
36:30
Speaker 3: parents probably suffer in silence and probably don't really know
36:36
Speaker 3: how to get out of things. So I think, you know,
36:39
Speaker 3: with Herschbrings's us UK, I think it would be great
36:41
Speaker 3: if we can kind of filter in a bit of
36:44
Speaker 3: support for parental mental health and look at how we
36:48
Speaker 3: can improve our mental health even when we are faced
36:51
Speaker 3: with incredibly difficult situations. But ultimately, you can't look after
36:58
Speaker 3: anybody until you can look after your health. And I
37:01
Speaker 3: think certainly in the last year we've been very lucky
37:05
Speaker 3: that things have kind of been a bit easier for us.
37:07
Speaker 3: Harriet's not been in hospital as much. We have, you know,
37:11
Speaker 3: a relatively okay day to day life. That's going to
37:15
Speaker 3: be a bit of breathing room to kind of think about, Okay, well,
37:17
Speaker 3: how can I improve my mental health? How can I
37:20
Speaker 3: deal with situations better? But obviously that isn't always the case.
37:24
Speaker 3: People don't get that kind of that break. So I
37:27
Speaker 3: think having a bit more certainly in the hospitals as well,
37:30
Speaker 3: just a bit more kind of integrated support of the
37:32
Speaker 3: parents I think would really be invaluable because it is
37:37
Speaker 3: really hard and like I said, you know, not every
37:39
Speaker 3: day is going to be an easy day, and it's
37:43
Speaker 3: not as possible to think, well, you know, I'm lucky,
37:46
Speaker 3: because things could be worse. You know, you get very
37:50
Speaker 3: bogged down in the situation that you're in. So yeah,
37:54
Speaker 3: and that can be you know, extraordinarily tough, and it
37:58
Speaker 3: feels like nobody really gets it, you know.
38:01
Speaker 2: Yeah, absolutely. I mean it's good to know that there
38:05
Speaker 2: is a gastro psychologist. I've never heard of that term.
38:07
Speaker 3: I'd never heard of it either, but yeah, that's what
38:11
Speaker 3: she is.
38:12
Speaker 2: Yeah, that's really really good to hear because the lynks
38:16
Speaker 2: as well. Having read a lot of papers as I have,
38:22
Speaker 2: the links between gastro health and mental health are huge,
38:28
Speaker 2: or gastro health and brain health are massive. So I
38:32
Speaker 2: guess we are possibly more susceptible having a stomach condition
38:36
Speaker 2: to other issues as well. But that's really really good
38:39
Speaker 2: to hear. And like you say, you know, everybody is
38:43
Speaker 2: different when it comes to when it comes to having
38:49
Speaker 2: a chronic condition or being a parent of a child
38:51
Speaker 2: with the chronic condition, So I guess it's quite difficult
38:55
Speaker 2: to have a sort of one size fits all approach.
38:58
Speaker 3: Yeah, you know, I think it's always going to be
39:03
Speaker 3: It's always going to be a challenge. I mean, like,
39:04
Speaker 3: how many different types of hirshebrings do we have, you know,
39:06
Speaker 3: ultra short segment, short segment, long segment total, chlonic, you know,
39:10
Speaker 3: and within that, every child you know, experiences it differently,
39:16
Speaker 3: so and then every parent experiences differently. You know. Some
39:19
Speaker 3: families have absolutely brilliant support, other families don't. And I
39:26
Speaker 3: think being able to kind of deal with that inequality
39:29
Speaker 3: and make it a bit more kind of you know,
39:33
Speaker 3: even across the board, would would go a long way
39:36
Speaker 3: in supporting families, you know for sure.
39:39
Speaker 2: Yeah, yeah, definitely. I just thought that point of how
39:42
Speaker 2: many do we have? I think I think it's six. However,
39:47
Speaker 2: I've just seen I've been doing a lot of little
39:50
Speaker 2: bit of research and talking to various parents with TCHD
39:53
Speaker 2: total and then there's a little plus signal at the
39:57
Speaker 2: other plus side, sorry, at the end of it, and
39:59
Speaker 2: that plus can mean loads of different things. So now
40:03
Speaker 2: by six hirshbruns that I put up a few a
40:07
Speaker 2: few weeks ago, I now think there's loads more. So
40:10
Speaker 2: I need to do some research before I before I
40:13
Speaker 2: start posting that again. But yeah, you're right, there's there's
40:16
Speaker 2: so many other conditions and potential sort of side effects
40:21
Speaker 2: that come with with hirshbruns. And just as we wrap up,
40:27
Speaker 2: I know you've talked about how well Harriet's getting on
40:30
Speaker 2: at the moment. That's so so good to hear that
40:32
Speaker 2: you haven't get touched with has any admissions for a while,
40:38
Speaker 2: But what do you see for her in the future.
40:44
Speaker 3: So where we're at with our journey at the moment
40:46
Speaker 3: is that because she's kind of doing so well with
40:50
Speaker 3: her ilostomy and hasn't had any kind of significant illnesses
40:55
Speaker 3: for a while, is just to kind of keep things
40:58
Speaker 3: as is. It may be the case that they, you know,
41:03
Speaker 3: offer pull through surgery using her you know, the tiny
41:07
Speaker 3: bit of you know, colon that she's got left and
41:10
Speaker 3: the small intestine to do a pull through. Me personally
41:15
Speaker 3: and my husband personally, urgue is that because she has
41:18
Speaker 3: a reasonably good quality of life at the moment, we're
41:21
Speaker 3: not really prepared to kind of put her through that
41:24
Speaker 3: surgery just because I think there are just probably just
41:29
Speaker 3: too many risks in terms of what the outcomes are
41:32
Speaker 3: for her. And that's at the moment that is our choice.
41:37
Speaker 3: And we've been very lucky that you know, are you know,
41:39
Speaker 3: the surgeons and stoninurses have worked with us some kind
41:42
Speaker 3: of not really pushed us one way or the other,
41:46
Speaker 3: and we felt like we've been listened to in terms
41:48
Speaker 3: of making that argument for keeping things as they are.
41:51
Speaker 3: Whether when Harriet is a little bit older and has
41:53
Speaker 3: a bit more understanding of things, she you know, wants
41:57
Speaker 3: to have a bit more input on that decision, then
41:59
Speaker 3: you know, it's her body that's that's her choice to make.
42:03
Speaker 3: I think as parents were always going to kind of
42:06
Speaker 3: hope that she doesn't kind of put herself through that,
42:08
Speaker 3: but being able to understand it's not really going to
42:11
Speaker 3: be our decision forever. And I mean that's another thing
42:16
Speaker 3: that you know, we kind of carry the not the burden,
42:19
Speaker 3: but the load of as parents of children with this condition,
42:23
Speaker 3: is that you're making these decisions for them, and you know,
42:27
Speaker 3: one day we are going to have to explain to
42:29
Speaker 3: her why she has a stoma and you know, why
42:32
Speaker 3: we didn't put her through a surgery, and you know,
42:35
Speaker 3: all these kind of tricky conversations that one day we
42:38
Speaker 3: will have to pick up. You know, that's a huge
42:41
Speaker 3: kind of load to carry as a parent, and you know,
42:44
Speaker 3: we just kind of with Harrier, even though she's only
42:47
Speaker 3: just coming up to three, you know, try to explain
42:50
Speaker 3: to her. You know, she's got her strungs, she has
42:52
Speaker 3: a stonma, you know, but she's so happy and healthy
42:56
Speaker 3: and that's what makes her happy and healthy. And you know,
43:00
Speaker 3: she's very interested in her stone as well. She always
43:02
Speaker 3: likes to see what we're doing. When we do bad changes,
43:04
Speaker 3: she wants to get involved. So I think for us,
43:08
Speaker 3: it's just about kind of building her own self confidence
43:12
Speaker 3: as she grows up and goes through life. But yeah,
43:15
Speaker 3: like I said, she's just absolutely full of energy and
43:18
Speaker 3: I think she's I think she's probably gonna be quite sporty,
43:20
Speaker 3: so fingers crossed. You know, she kind of finds a
43:23
Speaker 3: way to balance that with you know, the iliostomy or
43:27
Speaker 3: if she ever does go through surgery, to be able
43:30
Speaker 3: to just keep on being herself. You know, this condition
43:33
Speaker 3: doesn't define her. It's it's just a part of who
43:36
Speaker 3: she is.
43:37
Speaker 2: Absolutely no well said, Well said, But I thank you
43:41
Speaker 2: so so much for coming on and all obviously all
43:44
Speaker 2: the work that you do with with Hershbrod's UK wish
43:47
Speaker 2: you all the all the success with that as well.
43:51
Speaker 2: And wishing all the best for Harriet, for you and
43:55
Speaker 2: the rest of the family. Thank you so much for
43:57
Speaker 2: coming on so much.
43:58
Speaker 1: Thank you, thank you for listening and being part of
44:03
Speaker 1: this growing community. If you have enjoyed the episode, don't
44:06
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