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Episode 110 - With Sarah Hartwick · 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 Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello, and welcome to episode one hundred and
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Speaker 1: ten of Tom's Hirshbrungs Podcast. I am delighted to be
0:53
Speaker 1: joined this evening by Sarah. Sarah, Welcome to the podcast.
0:57
Speaker 2: Thank you, it's agree to be on here.
1:00
Speaker 1: Thank you so much for coming on. And I know
1:02
Speaker 1: we were just channing a little bit earlier on. This
1:05
Speaker 1: is potentially one of the youngest children I think we're
1:09
Speaker 1: ever going to talk about on the podcast, because you
1:12
Speaker 1: gave birth eleven weeks ago.
1:16
Speaker 2: So yes, almost yeah.
1:18
Speaker 1: So so we are. We are talking about a very
1:21
Speaker 1: very young child here. So thank you so much for
1:26
Speaker 1: coming on because I know presumably this time is a
1:30
Speaker 1: complete whirlwind.
1:33
Speaker 2: Yes, it's been very crazy. I when I you know,
1:38
Speaker 2: when we got the diagnosis and we were at the
1:40
Speaker 2: children's hospital and everything like that they didn't. Surprisingly, they
1:44
Speaker 2: didn't have a lot of resources. So when I went online, your.
1:47
Speaker 3: Podcast was one of the first that I found, and
1:50
Speaker 3: it's been so nice having the variety of ages and
1:55
Speaker 3: not only talking to parents of kids with hirshbrums, but
1:58
Speaker 3: also like grown adults who have hirshbrums and are doing
2:01
Speaker 3: great things.
2:02
Speaker 2: Because I remember when.
2:03
Speaker 3: We received the kind of likelihood that this is probably hirshbrums,
2:08
Speaker 3: my first thought, which I think I've heard a lot
2:12
Speaker 3: of parents talk about, was what's his quality of life.
2:15
Speaker 2: Going to be?
2:15
Speaker 3: And I was so sad, and I was just so
2:19
Speaker 3: kind of you know, you go down the parental rabbit
2:21
Speaker 3: hole of what's my child.
2:24
Speaker 2: Life going to look like with this disease?
2:25
Speaker 3: And since you know, finding the podcast and everything, it's
2:28
Speaker 3: been really great to see that lots of people go
2:31
Speaker 3: on to be Olympians and be able to play sports
2:35
Speaker 3: and you know, just kind of live their life way more.
2:38
Speaker 2: Typically than what I first perceived it was going to be. Like.
2:41
Speaker 3: So I wanted to get on here too and offer
2:45
Speaker 3: some advice, you know, kind of experience for you know,
2:49
Speaker 3: people who probably in this moment are working through a
2:52
Speaker 3: diagnosis of Hirshbrums.
2:53
Speaker 1: So absolutely, yeah, there's there's there's an awful lot of
2:56
Speaker 1: people in the world who are doing some amazing things
3:00
Speaker 1: and have Hirshbrungs. So like, the aim really is to
3:05
Speaker 1: just show people that, you know, it's yeah, there's ups
3:09
Speaker 1: and downs, of course there are, but you know, it
3:11
Speaker 1: shouldn't stop us doing whatever we want to do. You know,
3:15
Speaker 1: as you said, Olympians, you know, actors, actresses, all sorts,
3:18
Speaker 1: so plenty of things. But if we take you back
3:22
Speaker 1: to the beginning, and I know it's not that long ago,
3:25
Speaker 1: eleven weeks ago, this sounds like it sounds like I'm
3:27
Speaker 1: taking you back far in time. I'm not. I'm only
3:29
Speaker 1: taking you a couple of months ago. Would you like
3:33
Speaker 1: to sort of start the story, I guess from the beginning, Yeah,
3:37
Speaker 1: for sure.
3:38
Speaker 2: So my pregnancy and everything was completely normal. As most
3:42
Speaker 2: people probably know, you can't necessarily pick up Hirshbrungs disease
3:46
Speaker 2: on ultrasounds and things like that. So when I went
3:49
Speaker 2: into labor spontaneously, like there was no indication that there
3:53
Speaker 2: would be anything going on. But the pregnancy was normal,
3:56
Speaker 2: the birth was really smooth, and labor was smooth. I
3:59
Speaker 2: got really lucky with that.
4:01
Speaker 3: And then when he was born, he you know, by
4:05
Speaker 3: all appearances, looked completely fine. And then he was kind
4:09
Speaker 3: of a textbook diagnosis in the sense that he presented
4:14
Speaker 3: very normally for a Hirschbrungs. So in the first twenty
4:19
Speaker 3: four hours he hadn't had a maconium. We were feeding
4:23
Speaker 3: him breast milk and then also trying to top him
4:27
Speaker 3: up with a bit of formula, and then, you know,
4:30
Speaker 3: in a weird amount of time later, so almost an
4:32
Speaker 3: hour or two after, he would just puke all of
4:35
Speaker 3: his milk up. And at that point it wasn't bile
4:38
Speaker 3: or anything like that. But this is my first baby
4:42
Speaker 3: as well, so I had no idea kind of what
4:44
Speaker 3: was normal, like just normal newborn stomach sorting itself out
4:48
Speaker 3: in the first twenty four hours of life.
4:49
Speaker 2: So I kind of let the nurses know what was
4:52
Speaker 2: going on.
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Speaker 3: They didn't seem overly concerned at the time too, so
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Speaker 3: I was like, Okay, I guess it's just maybe I'm
4:58
Speaker 3: feeding too much and all that some of the nurses
5:01
Speaker 3: sadom may just be I was trying to feed them
5:03
Speaker 3: too much volume in that first twenty four hours of
5:06
Speaker 3: life kind of thing. So for that piece, there weren't
5:09
Speaker 3: any major red flags yet, but the doctors that came
5:12
Speaker 3: in kind of sporadically were starting to realize that going
5:17
Speaker 3: that long with automacodium was, you know, potentially something unusual.
5:22
Speaker 2: So they kept an eye on him.
5:24
Speaker 3: And then going into kind of the second day postpartum,
5:28
Speaker 3: he started to get more lethargic, so just kind of
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Speaker 3: sleepy and not really interested in eating, and he wasn't
5:37
Speaker 3: getting a lot of food in for kind of what
5:39
Speaker 3: they were hoping for his feeds. I had to kind
5:41
Speaker 3: of wake them up to eat and that kind of thing.
5:44
Speaker 3: Still was having these episodes of vomiting the formula and stuff,
5:48
Speaker 3: and again at that point it wasn't bile. It was
5:50
Speaker 3: just like continuously anytime we tried to feed them. And
5:53
Speaker 3: then his belly started to get a little bit descended,
5:56
Speaker 3: so they sent him for an X ray, which just
5:59
Speaker 3: showed that he had had some air fluid levels or
6:02
Speaker 3: gas levels, which can indicate things aren't moving through properly,
6:05
Speaker 3: but at that point it wasn't kind of this big concern,
6:09
Speaker 3: so they just kind of monitored him. And then later
6:12
Speaker 3: that evening he actually did have a maconium, so we
6:16
Speaker 3: were like, okay, like it was just a slow process
6:18
Speaker 3: of getting his gut going. And then overnight again that night,
6:23
Speaker 3: same thing, kind of puking, not really keeping his milk down,
6:27
Speaker 3: not doing well with feeding, that kind of thing. And
6:30
Speaker 3: so the next day his belly started to get much
6:32
Speaker 3: more to stend it and still hadn't had any more
6:34
Speaker 3: episodes of stool, and so the doctors that were just
6:39
Speaker 3: kind of checking in on him said, okay, we're going
6:42
Speaker 3: to get the pediatrician on the unit involved because we
6:45
Speaker 3: think this is probably, you know, a little bit more concerning.
6:48
Speaker 3: They sent him for an ultrasound as well, and it
6:50
Speaker 3: still showed kind of this similar thing as the X
6:53
Speaker 3: ray did, and so the pediatrician came in and did
6:56
Speaker 3: a full assessment. She also didn't love how his belly
6:59
Speaker 3: was looking, that he wasn't eating, And at this point
7:01
Speaker 3: it was like later afternoon on the third day. He
7:04
Speaker 3: was born on the twenty ninth, and sorry, this would
7:07
Speaker 3: have been sorry the second day.
7:08
Speaker 2: It's all a blur at this point. Honestly, that was
7:11
Speaker 2: like first forty eight hours. Yeah, so this was the
7:13
Speaker 2: thirty first, and he was born on the twenty ninth,
7:15
Speaker 2: So like going into the third day, in the afternoon,
7:18
Speaker 2: they were getting more concerned. He was really sleepy at
7:20
Speaker 2: this point, like no interest in eating all that kind
7:22
Speaker 2: of stuff. So they took him over to the nick
7:25
Speaker 2: you to just.
7:26
Speaker 3: Kind of monitor him, and then did some more X rays,
7:29
Speaker 3: and at that point they put an ENNG tube down
7:33
Speaker 3: his nose to suck out the stuff that wasn't coming
7:35
Speaker 3: out naturally, started him on some antibiotics, and then they
7:40
Speaker 3: were all kind of off chatting with the team at
7:43
Speaker 3: the Alberta Children's Hospital, and so they kind of came
7:47
Speaker 3: in and said, you know, he they did another X ray,
7:52
Speaker 3: the obstruction was looking progressively worse, and just in case
7:56
Speaker 3: he ends up needing surgery, he has to get transferred
7:59
Speaker 3: to the children's hospital.
8:00
Speaker 2: And so this was just.
8:02
Speaker 3: Such a blur and like stressful, obviously a situation like
8:06
Speaker 3: most people go through. I think it was Gemma on
8:08
Speaker 3: your podcast previously that talked a lot about, you know,
8:11
Speaker 3: kind of what moms and parents go through in this time,
8:13
Speaker 3: and it was everything she said I was feeling, just
8:16
Speaker 3: like the shock and the hormones and being separated from
8:19
Speaker 3: my child. It was so hard to go through all
8:21
Speaker 3: of that, but I knew he was going to, you know,
8:25
Speaker 3: the right place to be treated, and they had said
8:27
Speaker 3: to me, I was kind of like, Okay, what could
8:30
Speaker 3: possibly be going on?
8:31
Speaker 2: And at that point it was just kind.
8:33
Speaker 3: Of like, oh, hey, well, could be a maconium plug,
8:35
Speaker 3: but that's pretty rare. It could be something called Hirschbrung's disease,
8:39
Speaker 3: and I was like, oh no, that's that's not it.
8:42
Speaker 3: And then and or it could just be some sort
8:45
Speaker 3: of like a like actual obstruction like twisting over the bowel.
8:48
Speaker 2: We just don't really know yet. And so then he
8:51
Speaker 2: got transferred to.
8:52
Speaker 3: Children's that night, and I was obviously like a basket case,
8:56
Speaker 3: so anxious, so stressed out. But the nurses and the
8:59
Speaker 3: team that kind of made me really, they really made
9:03
Speaker 3: it a much more common environment. He didn't have to
9:05
Speaker 3: get rushed to to have more tests overnight. They were
9:09
Speaker 3: fine with him kind of just with the ng and
9:11
Speaker 3: settling until the morning, which gave me a little bit
9:14
Speaker 3: of reassurance. But yeah, so the next day they did
9:19
Speaker 3: a contrast enema, which most kids get. I'm noticing just
9:23
Speaker 3: listening to more episodes, like that's quite a common thing
9:25
Speaker 3: that people are experiencing when their little ones get diagnosed.
9:28
Speaker 2: This early, so he got that and the surgeon came in.
9:31
Speaker 3: She was super lovely and said, look like this is
9:33
Speaker 3: probably looking like it's hershbrum's disease. And I was like, no,
9:36
Speaker 3: I like, it's the super rare thing and so far
9:42
Speaker 3: she said, it looks like it's probably short segment, so
9:44
Speaker 3: that's good news, but ultimately we won't know exactly for
9:48
Speaker 3: sure until we do the rectal biopsy, so then you know.
9:50
Speaker 3: Rectal biopsy got done the next day. In total, we
9:53
Speaker 3: were only there for about five days, so pretty short stay.
9:57
Speaker 3: He improved really fast after they did his first irrigation,
10:01
Speaker 3: and I think they got about two hundred mils out
10:04
Speaker 3: of his first irrigation, which was wild shows you how
10:07
Speaker 3: backed up he was. But then I kind of thought, like, okay,
10:10
Speaker 3: so that maconium probably was just overflow coming out, like
10:13
Speaker 3: not even a true like stool that he did on
10:15
Speaker 3: his own.
10:15
Speaker 2: But yeah, So, the the experience.
10:19
Speaker 3: In Nicki was everything that Ja talked about from a
10:23
Speaker 3: mom's perspective. It was stressful, it was very difficult trying
10:27
Speaker 3: to manage the yourself as a postpartum woman, and like yes,
10:34
Speaker 3: access to medication for pain, like all that stuff for yourself.
10:37
Speaker 2: That was hard.
10:39
Speaker 3: But yeah, luckily he was only there for about five days.
10:41
Speaker 3: We started to do the irrigations, he improved, and then
10:44
Speaker 3: they discharged us before the biopsy results were back. But
10:47
Speaker 3: you know, it was very likely to be Hirschfruing's disease.
10:50
Speaker 1: So yeah, wow, that's that's quite that's quite a start.
10:58
Speaker 1: And I it's interesting thing that they mentioned it was
11:01
Speaker 1: the possibility of Hirshbrungs early on. And I know you've
11:07
Speaker 1: talked about a lot of the classic symptoms, the mconium,
11:11
Speaker 1: the the not I know you said it wasn't bile,
11:15
Speaker 1: but there was more things sort of coming up or
11:17
Speaker 1: certainly milk wasn't staying down, so kind of all the
11:22
Speaker 1: classic signs. But I guess, like a lot of parents
11:26
Speaker 1: who don't have any Hirschbrungs in the family or have
11:28
Speaker 1: never heard of Hirshbrungs, you maybe google it and say, oh, well,
11:32
Speaker 1: it's one in five thousand. We won't be the one.
11:35
Speaker 1: Surely we won't be the one. And and well, I
11:39
Speaker 1: guess somebody has to be the one at some point.
11:42
Speaker 1: But it's how did you feel, I guess when even
11:47
Speaker 1: though the odds were so small, because I'm presuming there's
11:50
Speaker 1: no sort of genetic history of Hirshbrungs in the family
11:53
Speaker 1: or anything like that.
11:55
Speaker 2: Yeah, and also on both mine and my husbands side,
11:57
Speaker 2: we have no history of Hirshbrungs, no kind of stories
12:00
Speaker 2: of people like passing away from stomach problems, you know,
12:04
Speaker 2: that kind of thing. So it was very new.
12:08
Speaker 1: Yeah. So you so you are in kind of in
12:11
Speaker 1: my case as well, you are the one in five thousand,
12:13
Speaker 1: or Leo is the one in five thousand. So I
12:17
Speaker 1: guess it is.
12:18
Speaker 2: I guess.
12:18
Speaker 1: How does that sort of feel that it is kind
12:21
Speaker 1: of just just luck? I guess.
12:27
Speaker 2: Yeah.
12:27
Speaker 3: Like it was very It was a huge mental thing
12:30
Speaker 3: that I had to work through because coming up to this,
12:33
Speaker 3: like as I said, Leo's my first child and probably
12:36
Speaker 3: will be my only child because I have two other
12:37
Speaker 3: step sons. I had waited, you know, such a long
12:42
Speaker 3: time to like find the right person and have a
12:44
Speaker 3: baby with them, And prior to meeting my husband, I
12:46
Speaker 3: was actually doing IVF because I wanted to have a
12:48
Speaker 3: baby on my own. And then so well, after all
12:50
Speaker 3: of this, Leo was born in like one of my
12:53
Speaker 3: first thoughts, and I think it was also a lot
12:55
Speaker 3: of the hormones. But it was, you know, is he
12:57
Speaker 3: gonna hate me for having him? Because you know, I
13:00
Speaker 3: it a baby so bad? Was that selfish of me
13:02
Speaker 3: to like want a child?
13:03
Speaker 2: And now my child has has this disease that's going
13:06
Speaker 2: to affect him his whole life, Like is he going
13:08
Speaker 2: to be mad that I made him? You know?
13:10
Speaker 3: And it was all this kind of terrible hormone thinking
13:13
Speaker 3: and I was really.
13:15
Speaker 2: Really upset about it.
13:16
Speaker 3: But that was the first day, and of course the
13:19
Speaker 3: diagnosis too, and you have no context for what it
13:23
Speaker 3: is like, how other people are living with it, how
13:26
Speaker 3: other people are functioning. You just kind of see the
13:29
Speaker 3: the ai interpretation on Google of what it is and
13:32
Speaker 3: how people live their life, which isn't reality.
13:35
Speaker 2: But and kind of, as I mentioned, like, I also
13:38
Speaker 2: work in gastor entrology. It's a nurse practitioner, so but
13:43
Speaker 2: I don't work with pediatrics.
13:44
Speaker 3: I work with adults, and I don't actually see a
13:46
Speaker 3: lot of adults coming in with this ever in my hospital,
13:49
Speaker 3: which I guess is a good thing. So I was
13:52
Speaker 3: also learning about this from a pediatric diagnosis perspective and
13:57
Speaker 3: trying to work through that as well as a mom,
14:00
Speaker 3: which was really hard to do both things.
14:02
Speaker 1: Yeah, definitely, I'm glad you mentioned that that you work
14:06
Speaker 1: in gastro because I was going to bring that up
14:07
Speaker 1: and I forgot to bring that up with the start,
14:09
Speaker 1: and I wrote myself a note saying I'm less say
14:11
Speaker 1: that because I think is really really important that did you,
14:17
Speaker 1: because obviously your background and your training, did you have
14:23
Speaker 1: more of an understanding of what hirshprungs is or is
14:27
Speaker 1: there not a lot of training on hirshbrungs in in gastro.
14:34
Speaker 3: Yeah, so as a like adult trained nurse partitioner, I
14:38
Speaker 3: actually hadn't heard of hirshbrings disease before my son was
14:42
Speaker 3: born with it, and I having all of the training
14:46
Speaker 3: that I have in gastro and trology, And as I said,
14:50
Speaker 3: I work in a cute care so I work in
14:52
Speaker 3: the hospital. I consult on patients around the hospital that
14:55
Speaker 3: have GI problems that their physicians are. They call our
14:58
Speaker 3: service and they say, Hey, I about this patient with
15:00
Speaker 3: you know XYZ, can you come you know, see what
15:03
Speaker 3: you think or help us manage this problem whatever. So
15:05
Speaker 3: we do that, and I've never had someone with hirshberms ever,
15:08
Speaker 3: which as I said, is probably a good way, but
15:12
Speaker 3: it was totally new to me, and trying to, as
15:15
Speaker 3: I said, trying to balance my knowledge of GI and
15:20
Speaker 3: kind of the worst of the worst that I've seen
15:22
Speaker 3: happen with people with bowel obstructions and then just try
15:26
Speaker 3: to be his mom was very difficult. So I would say, like,
15:31
Speaker 3: even for people that have babies with hirshberms that have
15:35
Speaker 3: no medical knowledge and maybe they think like, oh, if
15:37
Speaker 3: I had some knowledge, it would be helpful, it's actually
15:39
Speaker 3: not into In some way, it made it worse because
15:43
Speaker 3: you know, I know, like a little too much to
15:46
Speaker 3: be just kind of comfortable with the whole situation.
15:49
Speaker 2: My brain goes to the worst case scenarios of the.
15:52
Speaker 3: People that I've dealt with in the hospital that have
15:54
Speaker 3: bowel obstructions and even the entro colitis. Right, like patients
15:58
Speaker 3: that come in that have this as an adult that
16:01
Speaker 3: is not associated with hirshbrums, there are some of them
16:04
Speaker 3: go to ICU and you know, they're super sick, and
16:06
Speaker 3: I just like was spiraling with all of the worst
16:09
Speaker 3: case scenario what's in may it?
16:12
Speaker 2: So it was actually less helpful to have the knowledge
16:15
Speaker 2: that I do then better.
16:18
Speaker 1: That's interesting because I just in my head, I thought
16:21
Speaker 1: it might be the other way around. But what you've
16:23
Speaker 1: said there makes total sense that actually your head goes
16:28
Speaker 1: to because you've seen it and you know the worst
16:31
Speaker 1: case scenario. Your mind goes to that place, which is
16:36
Speaker 1: really really interesting. So sometimes if you, I guess, if
16:39
Speaker 1: you don't have the knowledge that you have, then it
16:43
Speaker 1: makes it a little bit easier. That's sort of like
16:47
Speaker 1: I don't know, want to use the word ignorance to it,
16:49
Speaker 1: but that sort of you know, not knowing the worst
16:52
Speaker 1: case scenario is actually a better thing. That makes sense.
16:56
Speaker 3: Yeah, And I also found two like it's very hard
16:59
Speaker 3: to like when you're a healthcare provider. We get into
17:03
Speaker 3: you kind of learn over time to be able to
17:06
Speaker 3: separate a little bit the person from the diagnosis, so
17:09
Speaker 3: that this allows you to go into a room and
17:10
Speaker 3: meet someone and be able to look at them logically
17:14
Speaker 3: and look at their signs and symptoms and not get
17:16
Speaker 3: caught up with too much emotional emotional things so that
17:21
Speaker 3: you don't so that you can't think logically. Right, So
17:24
Speaker 3: if you're always caught up with kind of the emotions
17:26
Speaker 3: of the situation, it's very hard to think logically and
17:29
Speaker 3: know what to do in the moment for a person,
17:31
Speaker 3: and sometimes that can be like a life or desk situation.
17:33
Speaker 3: But I found as a mom it's very hard for
17:35
Speaker 3: me obviously to be able to compartmentalize like I can
17:38
Speaker 3: do in the hospital for treatment, and that has had
17:42
Speaker 3: me worry about entroclitis more times than.
17:44
Speaker 2: I'd like to admit. But my husband is in engineering,
17:48
Speaker 2: so he's very logic and black and white, and he
17:50
Speaker 2: has been able to talk me down a number of times.
17:53
Speaker 2: It has been nice.
17:54
Speaker 1: But that's yeah, that's that's really interesting because I could imagine,
18:00
Speaker 1: you know, seeing so you see gastro illnesses, you know,
18:04
Speaker 1: on a daily basis, but when when it's your child
18:09
Speaker 1: and they have a condition that is you know, something
18:11
Speaker 1: that you don't see, not don't see every day, barely
18:14
Speaker 1: see at all, you know, that obviously makes it really,
18:19
Speaker 1: really difficult. So you're you're in a quite unique spot,
18:21
Speaker 1: I guess, in the fact that you have all the
18:24
Speaker 1: knowledge and then you have the sort of personal side
18:27
Speaker 1: to it as well. And I guess, I mean it's
18:31
Speaker 1: interesting because because of what you I guess, what you
18:34
Speaker 1: know about hirshbroungs now has that then helped you in
18:39
Speaker 1: your work as well.
18:43
Speaker 3: I think it definitely will. I haven't gone back to
18:46
Speaker 3: work yet. In Canada, we're very lucky. We get we
18:48
Speaker 3: can take a year on maternity leave, which has been
18:50
Speaker 3: really nice, like especially with someone with this condition, but
18:55
Speaker 3: I think it will help me a lot, and it's
18:56
Speaker 3: actually kind of sparked my interest more so in this
18:59
Speaker 3: area for or my own practice too, just having kind
19:03
Speaker 3: of what can I do to involve myself in the
19:05
Speaker 3: world of Hirshbrung's disease that before I would never have
19:08
Speaker 3: had a reason too, or even like kind of awareness
19:11
Speaker 3: to do that. So that's been nice and sorry kind
19:14
Speaker 3: of to answer one of your previous questions, it's not
19:18
Speaker 3: that I, you know, the I still had to go
19:20
Speaker 3: through like what is hirshbrongs?
19:22
Speaker 2: What does this mean for my child? And everything.
19:24
Speaker 3: The only thing that kind of having my background helped
19:26
Speaker 3: with was just, you know, I understand the anatomy of
19:29
Speaker 3: the coal and I understand you know, the nerve endings
19:32
Speaker 3: not being there and what that all means. But ultimately,
19:34
Speaker 3: kind of buzz I already said it, the putting that
19:37
Speaker 3: into practical application with your child is like a whole
19:40
Speaker 3: different story.
19:42
Speaker 1: I can imagine. I can absolutely imagine, and I know
19:47
Speaker 1: on a little bit of the chat we had before this,
19:51
Speaker 1: you know that a short segment, short segment hirshbruns. But
19:55
Speaker 1: you're still awaiting the pull through. Is that right at
19:58
Speaker 1: the end of the month.
19:59
Speaker 3: Yeah, so you get because pull through on the twenty seventh,
20:03
Speaker 3: and so our surgeon kind of talked us through what
20:07
Speaker 3: that looks like and and kind of be approached and
20:11
Speaker 3: everything like that. So obviously for people who've gone through
20:15
Speaker 3: this before, like, it's quite a long surgery, so that's
20:18
Speaker 3: you know, for any person, it's a long surgery, so
20:21
Speaker 3: kind of obviously any parent would be super nervous about that.
20:24
Speaker 2: So trying not to worry about it too quickly. I
20:27
Speaker 2: know it's coming up really soon.
20:29
Speaker 3: But since he's been home, he's been great, like not
20:33
Speaker 3: gonna what he's been doing, awesome. He has had some
20:38
Speaker 3: ups and downs, just with like the normal newborn stuff.
20:41
Speaker 3: So for example, changing like getting him on a formula
20:45
Speaker 3: that would.
20:45
Speaker 2: Work for his gut.
20:48
Speaker 3: And there was about a week or so where he
20:51
Speaker 3: was quite you know, gassy and upset and getting getting
20:56
Speaker 3: the usual digestive issues that probably every newborn would. But
21:00
Speaker 3: you know, again you have to layer this Hirshbrungs diagnosis
21:04
Speaker 3: on top of it and ask yourself, Okay, like this
21:07
Speaker 3: could just be a regular newborn working out a formula change,
21:11
Speaker 3: or could this be like an entro colitis starting.
21:13
Speaker 2: He hasn't had it yet either, thank god, knock on wood.
21:17
Speaker 3: But we don't really know how he's going to present either, right,
21:20
Speaker 3: so it's like we're still hopefully, you know, in the
21:24
Speaker 3: best sorry, best case scenario, he'll never experience that, but
21:27
Speaker 3: if he does, we'll have to figure out kind of
21:30
Speaker 3: what his tells are. And also being a new mom,
21:33
Speaker 3: I haven't gone through the usual turmoil with a newborn
21:37
Speaker 3: and kind of what they just generally go through, so
21:39
Speaker 3: that has also been a little bit difficult, But we've
21:42
Speaker 3: worked through those kind of the speed bumps and trying
21:45
Speaker 3: to figure out I think the other thing that's been
21:48
Speaker 3: a bit difficult is trying to find information on all
21:52
Speaker 3: this kind of stuff too, when like you're a new
21:53
Speaker 3: mom and then a mom of a baby with hirshbrums.
21:56
Speaker 3: Like I'll call his clinic nurses and they have been amazing,
22:02
Speaker 3: but they don't always have the answer to every question,
22:04
Speaker 3: especially because they aren't seeing your baby in the moment.
22:07
Speaker 2: And you know, they can only give advice on what they've.
22:09
Speaker 3: Experienced, and there's just not a lot of like new
22:15
Speaker 3: baby plus Hirshbrung's resources, I'd say.
22:19
Speaker 1: No, I think there's not a massive amount of Hirshbrung's
22:23
Speaker 1: resources just because of the nature of the you know,
22:27
Speaker 1: the condition it is. There's more than there there was,
22:30
Speaker 1: but it's I don't think it's ever going to have
22:33
Speaker 1: masses of research just because it is so rare, and
22:38
Speaker 1: you know, because the nature of how rare it is,
22:40
Speaker 1: there's not going to be that many people who have it,
22:42
Speaker 1: and then you know, there's not going to be that
22:45
Speaker 1: much data on you know, with all the people that
22:47
Speaker 1: have it and all sorts. But yeah, I can imagine
22:51
Speaker 1: sort of finding info is pretty tough.
22:55
Speaker 3: Yeah, And just like the practical questions that are tough
22:59
Speaker 3: unless you've experience. So for example, so Leo doesn't coop
23:03
Speaker 3: on his own at all without irrigations, he's like purely
23:05
Speaker 3: an irrigation guy. He'll sometimes fart, which we're like, ye,
23:10
Speaker 3: but he almost never does. And then also with his poops, Yeah,
23:15
Speaker 3: he only poops with irrigations. There's been like one or
23:17
Speaker 3: two times that he had a shart, and we like
23:19
Speaker 3: danced about that because it was something. But questions like
23:25
Speaker 3: do bicycle bicycle exercises and tummy exercises for gas work
23:30
Speaker 3: for a baby with hirshbrums, Like if they can't get
23:33
Speaker 3: the gas out, do bicycles work?
23:35
Speaker 2: Right?
23:36
Speaker 3: So that question question, as I said about formula, like
23:39
Speaker 3: you know they're super gassy, are we just going to
23:41
Speaker 3: have to do extra irrigations or like let.
23:44
Speaker 2: Some gas out?
23:45
Speaker 3: Or you know, how long do we give a formula
23:47
Speaker 3: before we switch to something else if it's upsetting their stomach?
23:51
Speaker 3: Things like gas drops, like will gas drops work? Because
23:55
Speaker 3: certain gas drops the whole point like some ethic cone
23:58
Speaker 3: which is one of the most by more popular ones
24:01
Speaker 3: for gas relief in babies, and same also with like
24:04
Speaker 3: grape water and stuff like that. It moves the gas
24:07
Speaker 3: into like a bigger bubble hopefully to the poop or
24:09
Speaker 3: like farted out. But like, again, is that gonna work
24:12
Speaker 3: in a Hushburn's baby. We tried it with him for
24:14
Speaker 3: a couple of days and it's he seemed to get
24:17
Speaker 3: more fussy with it, so we stopped. But all these
24:20
Speaker 3: things that people can just be like, oh we don't
24:23
Speaker 3: really know, like you can try it kind of thing,
24:25
Speaker 3: and you know, when you're a new mom, it's like, well,
24:27
Speaker 3: I don't know, I don't want to try it if
24:28
Speaker 3: it's gonna hurt him, you know, So those things, those
24:32
Speaker 3: very specific questions. It's like, you're just gonna go to
24:35
Speaker 3: try it and see what happens, which for me, who
24:38
Speaker 3: likes things black and white, has not been working very.
24:42
Speaker 1: That is the unfortunate thing. I hear very often that
24:48
Speaker 1: it's trial and error, you know, even even when it
24:51
Speaker 1: comes to things like stoma bags and what works and
24:55
Speaker 1: what doesn't, and you have food dyet all sorts of things.
25:01
Speaker 1: The frustrating thing, I guess is that everybody is individual,
25:07
Speaker 1: and two people who have and we're not also talking
25:11
Speaker 1: about different types of hirsch Brungs as well, you know,
25:14
Speaker 1: long segment of short segment. You can have two people
25:16
Speaker 1: who have short segment who have you know, quote unquote
25:20
Speaker 1: the same diagnosis, but have entirely different symptoms and lives
25:25
Speaker 1: and all sorts. And I guess, yeah, I guess that's
25:30
Speaker 1: the real frustration.
25:33
Speaker 3: Yeah, because then you kind of even can't take what
25:36
Speaker 3: is someone else's experience and necessarily apply it like lay
25:40
Speaker 3: it over exactly yours, and it's going to be like that,
25:42
Speaker 3: you know. Like I've heard some other people that have
25:45
Speaker 3: been on your podcast with short segment who their children
25:47
Speaker 3: do stool in between the irrigations, right, so it's like
25:51
Speaker 3: still short segment, but for some reason, Leo's is just
25:54
Speaker 3: like purely irrigation, and so yeah, it's that type of thing, right.
25:58
Speaker 3: It's such a unique place and I think that has
26:01
Speaker 3: led to me, especially at the beginning, I felt so
26:05
Speaker 3: isolated and alone and like scared and it's like, well,
26:08
Speaker 3: I can't even look this up because they don't get answers,
26:10
Speaker 3: you know, because it's such a rare thing, which is
26:15
Speaker 3: difficult some days to be like I don't know who
26:17
Speaker 3: I can ask about this.
26:19
Speaker 1: Yeah, yeah, I think you're absolutely right. I know you
26:21
Speaker 1: mentioned Gemma, who came on a few weeks ago and
26:27
Speaker 1: brilliant episode. If people haven't checked that out, if you
26:30
Speaker 1: really want to hear about like what mother I think
26:34
Speaker 1: mothers really go through in between I guess all of
26:39
Speaker 1: the surgeries and the irrigations and whatnot, and it sort
26:45
Speaker 1: of fills the gaps of because we talk about a
26:48
Speaker 1: lot of that procedures and we talk a lot about
26:50
Speaker 1: you know, this happened, and this happened, and this happened.
26:52
Speaker 1: But those gaps in between, those sort of long waits,
26:57
Speaker 1: either whether it be through surgery or sort of before
27:01
Speaker 1: and after. I think I would imagine I haven't been there.
27:06
Speaker 1: I would imagine those bits are pretty pretty tricky.
27:11
Speaker 3: Yeah, I think like when I think she kind of
27:14
Speaker 3: talked about this too, when you get discharged and the
27:18
Speaker 3: nurses are kind of confident that you can do in irrigation,
27:20
Speaker 3: and I remember just feeling very not confident about it,
27:28
Speaker 3: and my thank god, my partner, like he's been so amazing,
27:32
Speaker 3: but he has been able to figure out Leo's kind
27:36
Speaker 3: of angles for his rectum and everything, so he actually,
27:39
Speaker 3: for the most part, has been doing most of his irrigations,
27:42
Speaker 3: and I hold his legs apart and kind of I'm
27:44
Speaker 3: the I'm the belly massager and he's the irrigator. But
27:49
Speaker 3: it's just things like that, like who's gonna end up
27:51
Speaker 3: doing what and how is it gonna work in our house,
27:53
Speaker 3: and the in between, as you said, of hearing from people,
27:58
Speaker 3: there's been a week or two in between. When the
28:00
Speaker 3: nurses did a follow up for us after we went home,
28:02
Speaker 3: and you know that whole time, I'm trying to breastfeed
28:06
Speaker 3: and that's not really going well because my body was
28:09
Speaker 3: not happy that it was away from him. The first
28:12
Speaker 3: couple of days in nick you so, I wasn't really
28:14
Speaker 3: producing as much breast milk, and so then when we
28:16
Speaker 3: were trying to also top up with formula and then
28:18
Speaker 3: pump and it was just, you know, it was so
28:21
Speaker 3: stressful and really scary. And then of all the people
28:26
Speaker 3: in my mom group who you would normally reach out
28:29
Speaker 3: to and say like, hey, you know, my baby's doing this,
28:32
Speaker 3: is this normal kind of thing, it doesn't apply because
28:34
Speaker 3: Leo was harshbrums. I can't text someone and be like, hey,
28:36
Speaker 3: was your baby like this, like, you know, get some
28:38
Speaker 3: reassurance from that side of things. So I related to
28:42
Speaker 3: a lot of what she had to say, and I
28:44
Speaker 3: just felt it was so important to talk about to
28:47
Speaker 3: what we go through as mother's and father's being postpartum.
28:51
Speaker 3: You know, the separation. I had a really hard time
28:53
Speaker 3: with that the first couple of nights he was away,
28:55
Speaker 3: because your body, you just have a baby, You're not
28:57
Speaker 3: meant to be separated from them right away was super hard.
29:02
Speaker 3: You know, the guilt and fear and everything that goes
29:04
Speaker 3: into all of that.
29:05
Speaker 2: And yeah, the in between of waiting for appointments.
29:07
Speaker 3: Waiting for updates on their condition, you know, kind of
29:12
Speaker 3: always having that fear in your back pocket, like is
29:14
Speaker 3: this an entro colitis episode starting?
29:17
Speaker 2: And what do I do about that?
29:19
Speaker 3: And having to wait for the nurses to call us
29:21
Speaker 3: back to kind of talk through what he's going through
29:24
Speaker 3: that day. He had a couple of days where I
29:25
Speaker 3: did have to call them and kind of make sure
29:27
Speaker 3: it wasn't the start of an intro clitus, and thank
29:29
Speaker 3: god it wasn't. But you know, waiting, you know, five
29:32
Speaker 3: or six hours till they get to the end of
29:33
Speaker 3: their day so they can call us back, that type
29:35
Speaker 3: of thing. So that was hard. But you know, I
29:39
Speaker 3: can say now that we're in a little bit of
29:41
Speaker 3: a flow, I guess with our day.
29:45
Speaker 2: And if you have asked me in that moment at
29:49
Speaker 2: the start, like would I ever be at a place
29:51
Speaker 2: where this felt like a normal, everyday thing, I would
29:55
Speaker 2: have been like.
29:55
Speaker 3: This is never going to feel that way. And you know,
29:58
Speaker 3: my world was just turned upside down.
30:00
Speaker 2: And it does get better, it does, and you start
30:04
Speaker 2: to find, you know, things throughout your day that give you,
30:08
Speaker 2: give you happiness, and also that allow you to kind
30:13
Speaker 2: of function as normally as you can with a newborn.
30:17
Speaker 1: That's really really good to hear. It's really really good
30:20
Speaker 1: that that sort of because again I can only imagine,
30:26
Speaker 1: you know, if we'd rewind the clock back twelve weeks,
30:30
Speaker 1: you know, to think of all of the things that
30:35
Speaker 1: you have to learn that you never thought in a
30:38
Speaker 1: million years you would have to learn. I mean, irrigations,
30:45
Speaker 1: the word hirshbrungs, you know, everything that goes with that
30:49
Speaker 1: ganglion cells, all the procedures, the surgery is, the appointments,
30:55
Speaker 1: all of that stuff that twelve weeks ago you never
31:01
Speaker 1: even imagine. And then you you have to I mean
31:04
Speaker 1: you have no choice. You have to learn it all
31:06
Speaker 1: like there is there is no like, oh well i'll
31:11
Speaker 1: learn it, you know. Another time, you've got no choice.
31:13
Speaker 1: You have to learn it. And it staggers me really
31:19
Speaker 1: how people can fit all of that in and all
31:23
Speaker 1: of that information and alongside all of the anxiety and
31:28
Speaker 1: the worry and the you know, like you said, with
31:32
Speaker 1: you have thinking right his entrocolitis on the way and
31:35
Speaker 1: this that the other, and you're looking for signs for that,
31:38
Speaker 1: but you're also thinking about irrigations and you're thinking about
31:41
Speaker 1: all sorts of things, Like, I'm just absolutely staggered how
31:47
Speaker 1: people can do that. I just I don't Yeah, I
31:53
Speaker 1: don't care how people can figure all that stuff out.
31:56
Speaker 1: But I guess you just have to, don't you.
31:58
Speaker 3: Yeah, you just do it and it becomes a part
32:01
Speaker 3: of your life, and it just I think kind of
32:04
Speaker 3: is an attestation to people's strength and everything to be
32:07
Speaker 3: able to get this thrown at them and then still
32:11
Speaker 3: be able to kind of find a way to live
32:12
Speaker 3: and learn all the things you have to learn and
32:14
Speaker 3: all that kind of stuff and still yeah, be able
32:18
Speaker 3: to kind of look through look forward to, you know.
32:23
Speaker 2: Just living life and not letting this situation or this
32:27
Speaker 2: kind of diagnosis be your entire worlds like it is
32:31
Speaker 2: for most things. But it's yeah, it's difficult, but as
32:37
Speaker 2: you said, you just.
32:37
Speaker 3: Kind of you have to. You don't have another choice,
32:41
Speaker 3: and yeah, just kind of the hurdles that you don't
32:45
Speaker 3: see coming. Like a few days ago, I was at
32:49
Speaker 3: soccer practice with one of my step sons and my
32:51
Speaker 3: partner was home with Leo. And we've been trying obviously
32:55
Speaker 3: to keep him at home as much as we can
32:57
Speaker 3: just until his surgery and everything. We don't want to
32:59
Speaker 3: get him and stuff beforehand, but he had eaten so
33:04
Speaker 3: much that day he was super hungry and then was
33:07
Speaker 3: super full right at the time of soccer practice, and
33:11
Speaker 3: he was just not a happy camper, so that my
33:14
Speaker 3: partner had to like go do the irrigation by himself,
33:16
Speaker 3: and it obviously was very difficult, but he got it done.
33:20
Speaker 3: And so it's things like that that you don't anticipate
33:23
Speaker 3: having to kind of drop everything and go do in
33:25
Speaker 3: case there's an emergency, and trying to explain to people like, yeah,
33:29
Speaker 3: I can't come to this thing, or I can't go
33:31
Speaker 3: for dinner or these things right now because you know,
33:34
Speaker 3: my son meets his irrigation like at seven pm or
33:37
Speaker 3: eight pm, right, So it's that kind of stuff, and
33:39
Speaker 3: also trying to educate your friends and family about what's
33:42
Speaker 3: going on and kind of the seriousness of the disease
33:47
Speaker 3: and what it means for your everyday life. The other day,
33:51
Speaker 3: he just got over his two month vaccination schedule. So
33:55
Speaker 3: I'm at the public health office and she's going over
33:58
Speaker 3: the vaccines and there's one here I don't know if
34:00
Speaker 3: you guys have it.
34:01
Speaker 2: But it's for rotavirus. I think it's new. It's like
34:04
Speaker 2: a stomach bug kind of thing.
34:06
Speaker 3: And so the medication is a vaccine that is live,
34:09
Speaker 3: I believe, and also excreted through the stool, so it's
34:13
Speaker 3: actually contagious. So they say, you know, make sure you
34:16
Speaker 3: guys wash your hands and be really careful when you're
34:19
Speaker 3: doing his irrigations or diaper changes because it's contagious through
34:22
Speaker 3: the stool. But I'm sitting there like, Okay, this is
34:24
Speaker 3: a vaccine that gets excreted through the poope.
34:27
Speaker 2: He doesn't poope. He only gets irrigated twice a day.
34:30
Speaker 3: I'm like, is this safe to give a GI baby
34:34
Speaker 3: like a Hirshbrums baby. So then the clinic nursees like, okay, well,
34:37
Speaker 3: why don't you try to get in touch with the
34:39
Speaker 3: GI clinic and see if we can figure that out.
34:43
Speaker 3: But it's all these things you don't anticipate, and you know,
34:45
Speaker 3: I had to talk through it with his surgeon at
34:47
Speaker 3: to page her at the hospital, and she said, you know,
34:50
Speaker 3: I don't actually.
34:52
Speaker 2: Know the answer to that. That's a really good question.
34:53
Speaker 3: But she's like, it sounds like we probably don't want
34:55
Speaker 3: to give it and wait till after his surgery because
34:58
Speaker 3: you know, God forbid it kicks off an enteroclitus that
35:01
Speaker 3: kind of thing.
35:01
Speaker 2: Is like, what about that? So yeah, there's I think
35:04
Speaker 2: there's always going to be those moments, but you just
35:06
Speaker 2: do the best you can.
35:08
Speaker 1: Yeah, yeah, absolutely. I mean it's good in the way
35:12
Speaker 1: that they've said, well, I don't know, rather than just
35:14
Speaker 1: trying to fob you off with an answer or say
35:17
Speaker 1: oh yeah it's fine, you know, or or or whatever.
35:21
Speaker 1: At least at least they're honest and say, actually, we've
35:25
Speaker 1: never come across this before and actually we don't know
35:30
Speaker 1: which I think.
35:30
Speaker 3: Yeah, it was nice for us to kind of like
35:33
Speaker 3: talk through it together. But yeah, as a parent, you hope.
35:37
Speaker 3: I think you always think there's going to be someone
35:39
Speaker 3: that knows all the answers. And what I've realized now
35:42
Speaker 3: that I'm a mom is that's more so not the
35:44
Speaker 3: case than is the case.
35:45
Speaker 2: And I don't like that.
35:47
Speaker 1: Oh no, you don't. You don't want to have to
35:50
Speaker 1: I guess that. Slave, Yeah, you don't have to go
35:53
Speaker 1: through all of the things a big mum first time, Bob.
35:56
Speaker 1: And then you have to be the doctor as well,
35:59
Speaker 1: and you have to, you know, because again I see
36:02
Speaker 1: this so often with people who yes, the doctors will
36:06
Speaker 1: say do X, y Z whatever, but then you then
36:10
Speaker 1: have to do your own research on top of that
36:13
Speaker 1: and then go okay. And also a lot of hirshbrungs
36:20
Speaker 1: is in possiblys and maybe's and rather than do this,
36:28
Speaker 1: do that, do the other because everybody's so different. Yes,
36:33
Speaker 1: that's a really tough one.
36:35
Speaker 2: Yeah, the gray area when it's your kid is tough,
36:39
Speaker 2: I think definitely. But you know, over the last couple
36:44
Speaker 2: of months, the few silver linings that we've had which
36:47
Speaker 2: I had to try to find some or that you know,
36:50
Speaker 2: we didn't have to change a poopy diapers yet, So
36:52
Speaker 2: that's been great. Been sleeping well.
36:57
Speaker 3: He absolutely loves his irrigations. He's so excited to Wasteddy.
37:03
Speaker 3: I always joke like he's going to be so disappointed
37:05
Speaker 3: to figure out that like he actually has to poop
37:08
Speaker 3: and he's gonna be poop in his pants and having
37:10
Speaker 3: lots of poopy diapers. He's not going to be a
37:12
Speaker 3: fan of that. And you know, when we did his circumcision,
37:15
Speaker 3: like it healed really nicely because there was no poop. Like,
37:19
Speaker 3: so there's been a few things that were like, Okay, yeah,
37:21
Speaker 3: we haven't had to deal with the poopy stuff just yet,
37:24
Speaker 3: but I know that's coming up pretty soon.
37:27
Speaker 1: Yeah. Well, it's good to know that there are plus
37:29
Speaker 1: sides in the first few months of Hirshbrugs, because yeah,
37:34
Speaker 1: everyone talks about all of the stuff that's not so great,
37:37
Speaker 1: but you know, it's nice to know that there's there's
37:40
Speaker 1: a couple of things here and there. There was one
37:43
Speaker 1: one point that you you made a few moments ago
37:47
Speaker 1: when you said you celebrate him farting, and only Hirshbroung's
37:52
Speaker 1: parents know that there are only people There will be
37:55
Speaker 1: people listening to this going yeah, I know exactly what
37:58
Speaker 1: you mean. But if you told anybody, yeah that they
38:00
Speaker 1: wouldn't have a clue.
38:02
Speaker 2: Right, Yeah, And the thing is like, we don't know
38:05
Speaker 2: why some days he farts, in other days he doesn't
38:07
Speaker 2: much just be pressure related. But yeah, when he does,
38:10
Speaker 2: I always do a little dance.
38:11
Speaker 3: And as I said, the first couple of times at
38:14
Speaker 3: home where he had like a little shark come out,
38:16
Speaker 3: it was like, oh, she's like, good job, bunny. So yeah,
38:21
Speaker 3: that's a very unique thing obviously to hirshprime parents, to
38:25
Speaker 3: you know, celebrate when your baby has a poo for
38:28
Speaker 3: a fart.
38:29
Speaker 1: Yeah, the only Hirshbronks parents will know that. Nobody else,
38:33
Speaker 1: nobody else will have a clue. Only Hirshbrug's parents will know.
38:36
Speaker 2: Yeah.
38:38
Speaker 1: So I guess I talked a little bit about surgery
38:42
Speaker 1: coming up on the twenty seventh, twenty seven jan but
38:47
Speaker 1: I guess sort of in the meantime and sort of
38:51
Speaker 1: post that. What are your kind of hopes for the
38:54
Speaker 1: future for Leo.
38:57
Speaker 2: Yeah, that's a great question. When I hear heard you previously,
39:00
Speaker 2: I got emotional because it's such a oh.
39:03
Speaker 3: It's like a huge thing too. Obviously, everyone wants their
39:07
Speaker 3: baby to like thrive and be happy. And I do
39:10
Speaker 3: want him to find someone who completely understands his condition
39:14
Speaker 3: and whatever it looks like when he's an adult, you know,
39:17
Speaker 3: and is able to kind of accept him for that.
39:19
Speaker 3: And and I hope he's able to realize that he's
39:22
Speaker 3: got this disease and do things in spite of the disease,
39:28
Speaker 3: not because of it, if that makes sense, Like do this,
39:33
Speaker 3: you know, I'm going to do this in spite of
39:35
Speaker 3: my hirshbrums because I know I can, and obviously now,
39:39
Speaker 3: because he hasn't had his pull through yet and we
39:41
Speaker 3: don't know what the post is going to look like.
39:43
Speaker 3: It's hard for me to kind of say, you know,
39:45
Speaker 3: it'll be this type of path for him going forward,
39:49
Speaker 3: but I just want him to know that he doesn't
39:52
Speaker 3: need to be defined by his hirshbrungs and hopefully it
39:55
Speaker 3: just becomes background noise with you know, every so often,
39:59
Speaker 3: maybe the stery will turn up the volume a little bit,
40:01
Speaker 3: but hopefully we can turn it right back down and he.
40:04
Speaker 2: Can just kind of go on happy. His two step brothers,
40:09
Speaker 2: which we just call them full brothers, like they're just
40:13
Speaker 2: like their full brothers. He they're so.
40:15
Speaker 3: Good with him and they're so excited for him, and
40:17
Speaker 3: we've been kind of trying to teach them about hirshbrungs
40:21
Speaker 3: a little bit and kind of they they're almost eight
40:24
Speaker 3: and five, so obviously their grasp is going to be
40:26
Speaker 3: a bit limited. They just know that, you know, he's
40:28
Speaker 3: got a tommy disease and he needs to have you know,
40:31
Speaker 3: his poop irrigated twice a day, and as they get older,
40:34
Speaker 3: they'll be able to learn more about it. But he's
40:36
Speaker 3: got a great support network and my parents are luckily
40:39
Speaker 3: here in the city, so they've been really really great
40:41
Speaker 3: as well. And yeah, I just hope he, yeah, grows
40:44
Speaker 3: up to just have Hirshbrungs be not to find him.
40:49
Speaker 1: Yeah, I think that's fantastic because I think sorts of
40:54
Speaker 1: many people have achieved so much, you know, having Hirshbrungs
40:58
Speaker 1: and is, like you said, just background to them. You know,
41:01
Speaker 1: they have it, they've been through a lot, but actually
41:04
Speaker 1: they go on, they do amazing things and hopefully you know,
41:09
Speaker 1: Leo will do exactly the same.
41:12
Speaker 2: Yes, that's what we're hoping. And yeah, I think you know,
41:16
Speaker 2: for parents who maybe just navigating a new diagnosis or
41:22
Speaker 2: even those who have maybe had a diagnosis for a while.
41:25
Speaker 2: The thing that helped me the most, I think to
41:28
Speaker 2: just from a parental perspective, is the reaching out to
41:32
Speaker 2: other people or finding the support groups are the podcast
41:36
Speaker 2: because otherwise, yeah, as I said previously, it can be
41:39
Speaker 2: such a lonely place and.
41:42
Speaker 3: If there are ways that that can be alleviated for
41:46
Speaker 3: anyone else in the future that's going to go through that,
41:48
Speaker 3: Like I just want to say, kind of making those
41:50
Speaker 3: little connections. It doesn't have to be a lot, it
41:53
Speaker 3: doesn't have to be necessarily even reaching out to someone
41:55
Speaker 3: on Facebook. But I've just found by joining like following
41:59
Speaker 3: Red on Facebook and following pull Through Network and then
42:03
Speaker 3: of course your podcast, it gave me enough of a
42:06
Speaker 3: connection that even just reading people's posts, I felt like
42:09
Speaker 3: I was in the world of people who understood the diagnosis.
42:14
Speaker 3: Even if it wasn't that I had to kind of
42:16
Speaker 3: reach out or post something, I just had kind of
42:18
Speaker 3: it felt like I had a support network of people
42:20
Speaker 3: that understood without having to you know, track them down
42:24
Speaker 3: in person, because that's impossible when with a one in
42:26
Speaker 3: five thousand diagnosis. So, yeah, the support network has been
42:30
Speaker 3: amazing and yeah, fantastic.
42:35
Speaker 1: Yeah, no, you're absolutely right. I think that the support
42:38
Speaker 1: networks Facebook groups are really really important, and they say,
42:43
Speaker 1: as you said, trying to find people who understand what
42:46
Speaker 1: a ganglion cell is and understand what, you know, what
42:49
Speaker 1: even the word hirshbrungs means, even if they, you know,
42:52
Speaker 1: don't quite understand the ins and the out. I think
42:55
Speaker 1: that's that's incredibly important. But thank you so so much
42:59
Speaker 1: for coming on. I know this episode will really help
43:02
Speaker 1: a lot of people who are going through those sort
43:05
Speaker 1: of very very early stages and like I said before,
43:10
Speaker 1: wish you, Leo and your whole family all the very
43:14
Speaker 1: very best of the future.
43:16
Speaker 2: Thank you, Tom, I really appreciate it.
43:17
Speaker 3: And yeah, if anyone wants to reach out on Facebook,
43:20
Speaker 3: I'm happy to chad, especially new people.
43:22
Speaker 1: So fantastic. Thank you ever so much. Thank you for
43:30
Speaker 1: listening and being part of this growing community. If you
43:33
Speaker 1: have enjoyed the episode, don't forget to subscribe, leave a review,
43:37
Speaker 1: and share it with someone who might need it. You
43:40
Speaker 1: can connect with us on social media via Instagram, Facebook,
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Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast. See you
43:47
Speaker 1: next week by