Latest / Tom's Hirschsprung's Podcast / Episode 80 - With Kaytlin Slaughter

Transcript

Episode 80 - With Kaytlin Slaughter · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
0:41
Speaker 1: episode eighty of Tom's Hirshprunks podcast. I'm delighted to welcome
0:46
Speaker 1: Caitlin along and we are going to chat about your
0:50
Speaker 1: daughter and her Hirshprung's condition and I guess her story
0:54
Speaker 1: so far, and a few other topics that will bring
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Speaker 1: up as well. Welcome to the podcast. Ah Ki, thank
1:00
Speaker 1: you problem at all. Thank you so much for coming on.
1:04
Speaker 1: And as we mentioned that you have a daughter who
1:08
Speaker 1: has Hirshbrung's disease, and I know you wanted to go
1:11
Speaker 1: through various different parts of her story, a little bit
1:16
Speaker 1: about some resources diet, a little bit about the surgery
1:21
Speaker 1: as well. But I guess if we start from the beginning,
1:24
Speaker 1: probably the easiest place to start with her story.
1:28
Speaker 2: Okay, So when Isabella was born, she didn't pass her
1:34
Speaker 2: first all and she was throwing up a lot, and
1:39
Speaker 2: I had no idea what was going on. I just
1:42
Speaker 2: thought this was normal baby things that she was experiencing.
1:47
Speaker 2: So the doctor came in there and said we needed
1:50
Speaker 2: to they needed to run some tests, and they took
1:52
Speaker 2: her and they came back in the room and they
1:54
Speaker 2: didn't have her with them, and I was just so
1:57
Speaker 2: confused about where's my baby at the next time that
2:01
Speaker 2: I saw her, she was connected to a bunch of
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Speaker 2: wires and tubes and stuff, and they told me that
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Speaker 2: they had to rush her to the NICKU, which was
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Speaker 2: about an hour away from the hospital that I had
2:13
Speaker 2: originally had her at. So I was only twenty one
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Speaker 2: at the time, and I didn't know what to do
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Speaker 2: other than call my mother obviously and ask her give
2:28
Speaker 2: her all the information that I had. She went straight
2:31
Speaker 2: to Google, of course, and everything that came up on
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Speaker 2: Google was just not very informative.
2:39
Speaker 3: It was more jump into the worst case.
2:40
Speaker 2: Scenario, and so that made me panic even more and
2:45
Speaker 2: I had to come home without her, and that was
2:49
Speaker 2: very traumatic, like we talked about that word traumatic. And
2:54
Speaker 2: then she spent the next two weeks in the NICKU
2:57
Speaker 2: and they had to do biopsies. They figured out that
3:01
Speaker 2: she did have her sprungs, but they had to pull
3:03
Speaker 2: up the colostomy, so she had a colostom me for
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Speaker 2: the first three months and then they went in and
3:09
Speaker 2: did her reversal surgery at three months old. Everything life
3:18
Speaker 2: since then has been very difficult. We've had to deal
3:21
Speaker 2: with dilations and irrigations and being sick with intercolitis quite
3:28
Speaker 2: a bit, a whole bunch of hospital stays. And now
3:34
Speaker 2: we're at a point too. She's five years old now
3:37
Speaker 2: and she isn't really eating very well, not really at
3:41
Speaker 2: all actually, and she's having trouble going to the bathroom.
3:45
Speaker 2: So we've been doing her enemas or flushes not quite
3:51
Speaker 2: sure the word to use there.
3:52
Speaker 3: Yah, Yeah, So we.
3:55
Speaker 2: Do her flushes every night, but they are saying that
3:59
Speaker 2: we're not getting out enough that way, so they might
4:02
Speaker 2: need to do a sect. So now as we're speaking,
4:08
Speaker 2: we're currently in the hospital waiting for a colonoscopy and
4:12
Speaker 2: a coalonic monometry and that should tell us about the
4:16
Speaker 2: motility function in her colon, and it should tell us
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Speaker 2: that if she's able to get that sycostomy or not,
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Speaker 2: and if she might need that surgery again in case
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Speaker 2: that there's still some missing nerve cells in the colon.
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Speaker 1: Right, so they're still looking for still looking for missing
4:38
Speaker 1: or gangling celles, missing nerve cells then right, so with
4:43
Speaker 1: that it so with the missing gangling cells, were you
4:52
Speaker 1: told what type of hirsprungs she has in terms of
4:56
Speaker 1: whether it's long or short.
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Speaker 2: So I'm pretty sure that it is a long segment.
5:03
Speaker 2: I'm not quite sure just because of like we've talked about,
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Speaker 2: there's just so many different doctors and you know, kiddos,
5:10
Speaker 2: with this, it's just different for everybody, and they don't
5:15
Speaker 2: really give you the adequate information that I would say.
5:19
Speaker 2: They don't sit you down and completely explain to you
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Speaker 2: what you're going through.
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Speaker 3: Specifically, just because it is so like diverse.
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Speaker 1: Yeah, that is, and I know we mentioned a little
5:31
Speaker 1: bit before we started recording that it is. It would
5:34
Speaker 1: be so much easier if it was a one size
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Speaker 1: fits all approach, but it just isn't, so I guess,
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Speaker 1: And this is you know, this is whatever country you're in,
5:45
Speaker 1: wherever hospital you're at, they do sometimes have to talk
5:49
Speaker 1: in could and possibly and maybe because everybody is different
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Speaker 1: and everybody body, if that makes sense, will react in
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Speaker 1: a certain different way. Obviously, the Hirschprung's itself is more
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Speaker 1: sort of categorized between how much are you missing, and
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Speaker 1: then that sort of determines what hirsprungs you have, but
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Speaker 1: I guess in terms of the long segment she will
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Speaker 1: need a stonma or had does have a stonma for that.
6:30
Speaker 1: In terms of stonma care, how tricky was that for you?
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Speaker 2: So she only had the stoma for three months. Thankfully,
6:39
Speaker 2: you know, they reversed it and she doesn't have it anymore.
6:41
Speaker 2: So while we were doing that, everybody suggested doing the bags.
6:46
Speaker 2: Obviously putting a bag over the coast to me, but
6:48
Speaker 2: because she was a newborn and I just I just
6:51
Speaker 2: didn't feel comfortable using the bag and the adhesive and
6:55
Speaker 2: all of that. So what I did was I just
6:57
Speaker 2: put a and d ointment around this and then I
7:01
Speaker 2: wrapped it with goals a couple of times, and then
7:05
Speaker 2: put her diaper over it. And that's how how we
7:08
Speaker 2: did it, so she didn't even have to wear the bag.
7:11
Speaker 1: It's quite clever. I quite like that.
7:15
Speaker 2: Yeah. The doctors were very like, what is this Like,
7:19
Speaker 2: they were like, wow, I can't believe you found another
7:22
Speaker 2: way to do this, And I was like, yeah.
7:23
Speaker 1: Yeah, I think that's great. I mean it's and again
7:27
Speaker 1: it's like we said before, it's it's trial and error,
7:29
Speaker 1: isn't it. It's sort of saying right, because a lot
7:33
Speaker 1: of the bags and a lot of the people I
7:36
Speaker 1: speak to who I mean, even the companies that make
7:39
Speaker 1: bags find it very very difficult, especially if you have
7:42
Speaker 1: a small baby or small child then you get given
7:46
Speaker 1: adult bags. I mean, it just doesn't work. So trying
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Speaker 1: to find something where you can stop the leaks or
7:55
Speaker 1: you can you can find find something that works, is brilliant. Yeah,
8:05
Speaker 1: but I think it's that's again, it's it's it's trial
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Speaker 1: and error, isn't it. It's trial and error and it
8:11
Speaker 1: becomes and it becomes quite a tricky one. So in
8:15
Speaker 1: terms of the reversal at three months, was that post
8:23
Speaker 1: pull through.
8:26
Speaker 3: That so they did it all at once.
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Speaker 2: Yeah, they did the pull through and they closed up
8:31
Speaker 2: the storma hopefully.
8:34
Speaker 1: And how is how is life being sort of without
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Speaker 1: the stoma? Is that better or is that sort of.
8:41
Speaker 2: Well, obviously the the stoma really it was really scary,
8:47
Speaker 2: you know, seeing seeing her intestine on the outside. That
8:50
Speaker 2: was very scary for me. But honestly think that those
8:55
Speaker 2: first three months when she had it, she has she
8:58
Speaker 2: did the best out of her whole life because she
9:00
Speaker 2: had no issue at all. She was you know, drinking
9:03
Speaker 2: breast milk, not spitting it up, and not crying as
9:07
Speaker 2: much after she had her full through surgery. The entire
9:11
Speaker 2: time that she was a baby, she screamed. And I
9:14
Speaker 2: mean this is not this is not like just baby
9:19
Speaker 2: crying or colic or anything like that. She screamed because
9:23
Speaker 2: she was clearly in pain and she had to be
9:26
Speaker 2: held a certain way. Like it really affects the parents
9:31
Speaker 2: mentally as well, having to deal with that, because obviously
9:34
Speaker 2: you don't want to get frustrated, but hearing constant screaming
9:38
Speaker 2: and then trying to manage everything, it's a lot.
9:42
Speaker 1: Yeah, And I think that's something that I'm at pains
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Speaker 1: to say as well, is that, yes, obviously your number
9:53
Speaker 1: one priorities is your child, but the parents shouldn't be
9:59
Speaker 1: neglected either in terms of their feelings and their thoughts,
10:04
Speaker 1: because as we've mentioned, you know off air that trauma
10:10
Speaker 1: is is is very real when it comes to having
10:16
Speaker 1: a child with a rare condition, an invasive condition, long
10:22
Speaker 1: term condition, you know, that kind of trauma is very
10:26
Speaker 1: much real. And I think I know you wanted to
10:31
Speaker 1: talk a little bit about that as well. And the
10:35
Speaker 1: words trauma and traumatic PTSD are very overused just in
10:42
Speaker 1: general life. But I think those kind of feelings are
10:48
Speaker 1: absolutely the things that a lot of parents with Hirschbrung's
10:53
Speaker 1: children do go through.
10:55
Speaker 3: Yeah.
10:56
Speaker 2: And another thing is that, obviously I feel like mothers
10:59
Speaker 2: in general who experience postpartum depression, at least in my area.
11:05
Speaker 2: We're over here in America, I don't feel like we
11:09
Speaker 2: have that much resources for postpartum and we don't have
11:13
Speaker 2: the support that we really need. But when it comes
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Speaker 2: to being a medically complex mother, that is like PTSD
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Speaker 2: postpartum times ten, Like it.
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Speaker 3: Doesn't even touch it, and it.
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Speaker 2: Really does mess with you a little bit having to
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Speaker 2: see your child suffer.
11:33
Speaker 1: Yeah. Absolutely, and that I think anybody listening to this podcast,
11:38
Speaker 1: and I know I do have a lot of mothers
11:40
Speaker 1: that listen to this podcast, a lot of mothers with
11:42
Speaker 1: Hirshprung's children that listen that will totally understand what you're
11:48
Speaker 1: saying in terms of that those feelings of depression of
11:56
Speaker 1: having to see your child go through I mean, having
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Speaker 1: to see your child go through any surgery is difficult,
12:02
Speaker 1: but we know with Hirsprungs that there's going to be
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Speaker 1: I mean at least one surgery, more than likely multiple
12:12
Speaker 1: surgeries and having to do that over and over again,
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Speaker 1: especially with long segment obviously being a little bit more severe,
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Speaker 1: must be incredibly incredibly tough. I mean, how did you
12:27
Speaker 1: get through those moments?
12:30
Speaker 2: Well, I'm gonna be completely honest with you, I did
12:34
Speaker 2: not have much support, like I was telling you, so
12:37
Speaker 2: I struggled a lot with addiction during that time. But
12:41
Speaker 2: here recently, and I know that religion is a tourchie
12:45
Speaker 2: subject as well, But I have gave everything to God
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Speaker 2: and that is how I've got through this. That is
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Speaker 2: literally the only way I can tell you. He has
12:57
Speaker 2: carried me through it. He has kept me over, He
13:00
Speaker 2: has gave me the knowledge that I needed to be
13:04
Speaker 2: able to tell the doctors what they need to do,
13:06
Speaker 2: because I know we also talked about that as well,
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Speaker 2: where the doctors will tell you, well, you're the parent
13:12
Speaker 2: and you know your child, so you bring them in
13:15
Speaker 2: when you feel like you need to. But then when
13:16
Speaker 2: you're telling them what they need to do, what you've
13:19
Speaker 2: learned because you're putting your research into this specific disease,
13:23
Speaker 2: whereas so they have their knowledge of all kinds of things,
13:27
Speaker 2: so they're not studying this specific thing like you are. Yeah,
13:31
Speaker 2: but then they'll tell you that you don't know what
13:32
Speaker 2: you're talking about. So that's very frustrating as well.
13:35
Speaker 1: Yes, very And I know we mentioned a little bit
13:38
Speaker 1: about mother's instincts and we'll get onto that in a second.
13:42
Speaker 1: But you're right, you as as a doctor, as a nurse,
13:45
Speaker 1: as a medical professional, you have to know so much
13:49
Speaker 1: about so many different conditions. You don't have. You know,
13:55
Speaker 1: nobody has the brain capacity to know everything about every
14:01
Speaker 1: rare condition, you know. You that's why you have specialists
14:06
Speaker 1: in Hirshbrung, specialists in other types of rare conditions, because
14:11
Speaker 1: nobody can know absolutely everything about everything. They just can't.
14:16
Speaker 1: So I would always advocate for people to do their
14:23
Speaker 1: own research as well. I think that's that's so so important.
14:28
Speaker 1: It's not to necessarily say, you know, not believe doctors
14:32
Speaker 1: and nurses, because of course they're incredibly highly skilled and
14:36
Speaker 1: highly trained, but add that to your own research. I
14:41
Speaker 1: would always always advocate for that. No, I'm good, so
14:48
Speaker 1: I would. I would always advocate for people doing their
14:51
Speaker 1: own research. I just think it's incredibly important. And you
14:54
Speaker 1: have done your own research.
14:55
Speaker 2: As well, Yes, for sure, And I do want to
14:58
Speaker 2: say this, I know that it's very touchy about like
15:01
Speaker 2: AI and TikTok and things like that, and obviously you
15:05
Speaker 2: can't believe everything that you find on the internet.
15:07
Speaker 3: But I am very.
15:09
Speaker 2: Thankful that we do have those things now because if
15:13
Speaker 2: I would, like, if I would have had TikTok and
15:16
Speaker 2: like chat, GPT and things like that back when she
15:19
Speaker 2: was a baby, it would have made it so much easier,
15:21
Speaker 2: because that's where I get a lot of my information now,
15:24
Speaker 2: and it's like, wow, I really needed this back then.
15:29
Speaker 2: So I'm sure it's really hard for back in the
15:32
Speaker 2: past up until this point, for parents, Like how we
15:35
Speaker 2: feel now like we don't have the information. I'm sure
15:38
Speaker 2: it was so much harder for parents up until this
15:41
Speaker 2: point to where we did have all this access to
15:44
Speaker 2: go do our own research.
15:46
Speaker 1: Yeah. Yeah, I mean I think of my own parents. Yeah,
15:49
Speaker 1: thirty odd years ago without that information and I mean internet,
15:55
Speaker 1: even your nineties that I would have been early nineties.
15:59
Speaker 1: I mean the Internet wasn't really a thing in the
16:02
Speaker 1: early nineties. I mean how you got your information. I
16:06
Speaker 1: had no idea, no idea. I mean, you know, you
16:10
Speaker 1: can't exactly go to the library, and I can't imagine
16:12
Speaker 1: there's many books on Hirshbrungs in the library. So yeah,
16:16
Speaker 1: I mean, and you're right when you say yes. Obviously
16:20
Speaker 1: you've got to be aware of what you see and
16:23
Speaker 1: what you read. And the social media is it's everything,
16:28
Speaker 1: isn't it. It's the good, it's the very best, and
16:31
Speaker 1: it's the very worst, and it's everything in between. So
16:35
Speaker 1: some you know, so long as you pick the right
16:37
Speaker 1: things at the right time, you know, you will learn
16:42
Speaker 1: a heck of a lot. I mean, and I'm the same.
16:44
Speaker 1: You know, the amount of people that I've met through TikTok,
16:48
Speaker 1: through Instagram, through Facebook. I mean, I wouldn't have this
16:52
Speaker 1: podcast if I didn't have social media. It's how I
16:55
Speaker 1: get ninety five percent of my guests. But there are
17:00
Speaker 1: so many you know, especially in terms of things like stomachcare, right,
17:05
Speaker 1: I'd see so many videos on people just posting, not
17:10
Speaker 1: saying you have to do this or you have to
17:13
Speaker 1: do that, but just you know, this is what we
17:16
Speaker 1: do and this is what works for me. And I
17:20
Speaker 1: think those are really really helpful. And I think something
17:25
Speaker 1: like that would have been really beneficial for my parents.
17:29
Speaker 2: Yeah, and just like what you've started here, like this
17:31
Speaker 2: is what's important, is everybody getting together and talking about experiences.
17:35
Speaker 3: That way, you can apply.
17:37
Speaker 2: These things that you're learning to your specific situation and
17:42
Speaker 2: you're not just depending on what you see. You're listening
17:45
Speaker 2: to real life stories and talking to people that it
17:49
Speaker 2: really feels so lonely because we know that this is
17:51
Speaker 2: a rare disease and you don't really know that many people,
17:54
Speaker 2: at least I don't. I don't know anybody else other
17:57
Speaker 2: than you talking with you. I don't know anyone else
18:00
Speaker 2: who has this disease. And I feel very lonely in this.
18:03
Speaker 1: Yeah, Yeah, And I think that sense of community is
18:06
Speaker 1: so so important. Also, it's the other reason why I
18:08
Speaker 1: started this, because I'd never met anybody with this, And
18:12
Speaker 1: to be honest, even when I started this, I still
18:15
Speaker 1: didn't know. I didn't know, if you know. I just
18:17
Speaker 1: typed hrsprungs into Instagram, That's all idea is, and just
18:20
Speaker 1: see who I found. There was no process to it, really,
18:25
Speaker 1: and I've been lucky enough to find so many wonderful
18:29
Speaker 1: people just through social media. And I would always advocate
18:34
Speaker 1: to use social media, you know, in order to build
18:38
Speaker 1: a community, because it is the best way and it
18:41
Speaker 1: is the best modern way of doing it. In my opinion,
18:46
Speaker 1: and that sense of not being alone, I think is
18:51
Speaker 1: something that really resonates with a lot of people because,
18:55
Speaker 1: as you said, as I talk to you now, you're
18:58
Speaker 1: in hospital doing this this podcast episode, and I guess
19:03
Speaker 1: that can feel very much on your own.
19:10
Speaker 3: Yeah, it definitely.
19:11
Speaker 2: And now I can say, and I know that we've
19:13
Speaker 2: touched on like mothers of children with this, but I
19:16
Speaker 2: can't imagine how it is for the fathers who have
19:19
Speaker 2: to keep it together for not just the child, but
19:22
Speaker 2: for the mother because I know that my husband struggles
19:24
Speaker 2: with this a lot, that he doesn't communicate it like
19:28
Speaker 2: I do because we're more emotional creatures obviously. Yeah.
19:34
Speaker 1: Yeah, I mean people who've sort of flicked through my
19:37
Speaker 1: episodes will see that it's probably about eighty five percent female.
19:42
Speaker 2: Yeah, So I can only imagine how it is for
19:44
Speaker 2: the fathers.
19:45
Speaker 1: Yeah, And that's one thing I do want to do,
19:47
Speaker 1: want to have more of I want more fathers to
19:50
Speaker 1: come on, you know, and and talk about because yes,
19:55
Speaker 1: I know that in a lot of cases, the mothers
19:59
Speaker 1: are there all the time. You know that they will
20:02
Speaker 1: know more because they're there all the time. And but
20:06
Speaker 1: it's not to take away from the father's thoughts and feelings, Yeah.
20:10
Speaker 2: Because they're still the one having you know, I'm pretty
20:13
Speaker 2: sure that he wouldn't He would rather be here with
20:16
Speaker 2: me than having to be there providing for us having
20:19
Speaker 2: to go to work. And I'm sure that he is emotional,
20:22
Speaker 2: but he's having to work, so he can't express it
20:25
Speaker 2: like I can just sit here and just cry about
20:27
Speaker 2: it if.
20:27
Speaker 3: I need to.
20:29
Speaker 1: Yeah, yeah, no, you're absolutely right, And I think that
20:33
Speaker 1: is important that the emotions of both parents are taken
20:37
Speaker 1: into consideration. And like you said, you know, sometimes you
20:42
Speaker 1: have to just I mean, in his case, as you've
20:46
Speaker 1: just said, he's off to work, he can't then just
20:50
Speaker 1: sort of emotionally, you know, go all over wherever. But
20:57
Speaker 1: it's yeah, I think it's an important subjects. I think
21:01
Speaker 1: it's a really important subject that, because we talked about before,
21:06
Speaker 1: you've both been through a similar experience. You've both been
21:11
Speaker 1: through that sort of medical traumatic experience. So I think, yeah,
21:19
Speaker 1: both both mothers and father's thoughts and feelings are equally valid.
21:24
Speaker 2: I feel like us as mothers, we don't really think
21:27
Speaker 2: about how much it affects them, just because the baby
21:30
Speaker 2: was taken out of our body and away from us,
21:33
Speaker 2: but it's still their baby toos.
21:35
Speaker 1: Absolutely, oh yeah, totally totally agree with that. And and
21:40
Speaker 1: it's also about again, it's about everyone's thoughts and feelings,
21:45
Speaker 1: isn't it. Because I guess as a mother, your first
21:49
Speaker 1: thoughts are with your daughter and going O they okay, yeah,
21:54
Speaker 1: what do they need? How can I support them? And
21:56
Speaker 1: then often the mothers get lost in their thoughts, their
22:00
Speaker 1: needs and their feelings because you're just as important. You know,
22:06
Speaker 1: you need somebody there to take care of those thoughts
22:10
Speaker 1: and feelings as well. So I would always yeah, I
22:14
Speaker 1: would always look at the larger picture of makes making
22:18
Speaker 1: sure that everybody's supported.
22:20
Speaker 2: I guess, yeah, along with the siblings. I feel like
22:23
Speaker 2: that's not really talked about as well. My daughter has
22:27
Speaker 2: a little brother and an older sister I mean sorry
22:30
Speaker 2: that was backwards, an older brother and a little sister.
22:34
Speaker 3: He is the middle child.
22:36
Speaker 2: And I know that my oldest and probably the youngest too,
22:39
Speaker 2: struggles with feeling like she gets more attention because she's
22:43
Speaker 2: medically complex and she's in the hospital and stuff. And
22:46
Speaker 2: I had to explain that to him that while yes,
22:49
Speaker 2: she does get more of my attention because of that,
22:53
Speaker 2: it doesn't make him less than and he doesn't want
22:56
Speaker 2: to be the one actually having to experience all of
22:59
Speaker 2: this pain. For him to just kind of have grace
23:01
Speaker 2: and understanding that she's going through a lot. But he
23:05
Speaker 2: also is too because he has to be away from
23:07
Speaker 2: his mama and I'm coming to come to the hospital. Yeah,
23:11
Speaker 2: and ah that so it really does affect the siblings
23:13
Speaker 2: as well.
23:14
Speaker 1: Yeah, you're absolutely right. You're absolutely right. And again it's
23:18
Speaker 1: something that gets completely lost and something that I probably
23:21
Speaker 1: don't talk about enough on here about siblings. And you
23:26
Speaker 1: know what they must feel because see their brother or
23:30
Speaker 1: sister is in hospital, they're away from them. You know,
23:35
Speaker 1: they don't know necessarily what is going on. Yeah, and
23:39
Speaker 1: that you know is going to be a difficult thing
23:43
Speaker 1: as well, and they'll obviously need the right support. And
23:48
Speaker 1: it's obviously it's not just their brother sister being away
23:50
Speaker 1: from it often you know, the mother, father away as well.
23:56
Speaker 1: So yeah, I think I think you're absolutely right. That's
23:59
Speaker 1: a really good point. You make really good point, and
24:03
Speaker 1: I guess on that as well. In terms of we
24:08
Speaker 1: talked a little bit about resources and about trying to
24:15
Speaker 1: trying to find resources when you had the original diagnosis.
24:23
Speaker 1: How tricky was that to find resources?
24:27
Speaker 2: Yeah, so, like we said, they don't really explain everything
24:32
Speaker 2: to you right off the bat because they don't really
24:35
Speaker 2: know how it's going to affect every person. But with this,
24:40
Speaker 2: I've had to become a nurse. And I know that
24:44
Speaker 2: you are as a mother anyway when your kids get sick,
24:47
Speaker 2: but this is so much more complex. I feel like
24:49
Speaker 2: I should have had training for the things that I
24:52
Speaker 2: have to do for her. So there's that, like I
24:56
Speaker 2: I have had to look up any resources that I need.
25:00
Speaker 2: Do I need training for this? I need to figure
25:02
Speaker 2: it out myself because it has not been provided to
25:05
Speaker 2: me that they have not told me about this. And
25:08
Speaker 2: then not only that, but now so I can't work
25:12
Speaker 2: and she can't go to school, so I'm going to
25:14
Speaker 2: have to be a teacher. I'm going to have to
25:15
Speaker 2: homeschool her at home. But then how am I going
25:17
Speaker 2: to get this extra money to provide for my family
25:19
Speaker 2: since I can't go to work. So obviously there is
25:24
Speaker 2: disability that you can get on, but it's so looked down.
25:29
Speaker 3: On by people.
25:30
Speaker 2: People in this area make you feel very low, I
25:35
Speaker 2: guess for having to file for disability or something like that.
25:39
Speaker 2: They just they don't make it seem like what it's
25:42
Speaker 2: really there for. They kind of just act like it's
25:44
Speaker 2: more of a handout that you're reaching for instead of
25:49
Speaker 2: actual assistance that you need.
25:52
Speaker 1: Yeah, I mean that does exactly what it's there for.
25:55
Speaker 1: The situation you've described where you have a child with
25:59
Speaker 1: a long term petition, you can't go out to it
26:01
Speaker 1: because you have to look after you know, you can't
26:04
Speaker 1: just you can't just leave your door to completely a
26:06
Speaker 1: load it doesn't you know. Yeah, that that is a
26:11
Speaker 1: that is a real shame that it's looked down upon,
26:15
Speaker 1: because for sure, yeah, yeah, no, I'm sure that there
26:19
Speaker 1: are other areas that have that as well, and that
26:25
Speaker 1: that is a shame because that's that's not that's not
26:29
Speaker 1: you know, if you're using for what it's exactly you
26:32
Speaker 1: are there to be used for, there should be no
26:36
Speaker 1: prejudice at all.
26:38
Speaker 3: Right.
26:38
Speaker 2: And then when it comes to therapies that she's needed,
26:42
Speaker 2: the doctors didn't say she's going to need physical therapy
26:45
Speaker 2: for her core strengths. She's going to need feeding therapy
26:48
Speaker 2: to help her know what to eat or to even
26:51
Speaker 2: be able to eat.
26:52
Speaker 3: All these things. So I've had to be the one
26:55
Speaker 3: to reach out and be like, Hi, is there any
26:58
Speaker 3: thing that I can do for her? For this?
26:59
Speaker 2: Is any therapy I can get her signed up for it?
27:02
Speaker 2: And they're like, oh, yeah, we can do this, And
27:04
Speaker 2: I'm just kind of like.
27:05
Speaker 3: Wow, wasn't this offered?
27:07
Speaker 2: Because what if I didn't even know and she went
27:10
Speaker 2: all this time without it and because I didn't know
27:13
Speaker 2: that it was available.
27:14
Speaker 1: Yeah, but it's like you said before, you do end
27:17
Speaker 1: up having to be the advocate and the you know,
27:21
Speaker 1: as we mentioned, it's so important to do your own
27:27
Speaker 1: research as well, and you you do end up having
27:31
Speaker 1: to be the advocate and that's and and that I guess, Yeah,
27:37
Speaker 1: I know, I know you said it probably should have
27:39
Speaker 1: been offered to you, but yeah, you do end up
27:46
Speaker 1: having to do your own research and your own you know,
27:50
Speaker 1: support and this that the other. And it's something I'd
27:54
Speaker 1: always always think is necessary. But yeah, no, you're right,
27:58
Speaker 1: it should have been something that should be there already. Okay,
28:03
Speaker 1: we have this, this is what they might need, and
28:05
Speaker 1: that sort of step process. I guess. Yeah, I know.
28:10
Speaker 1: There was another topic you wanted to discuss, which was diet,
28:14
Speaker 1: which is can be you know, a real minefield for
28:19
Speaker 1: Hirshprung's children for obvious reasons, being a stomach condition. But
28:23
Speaker 1: then there are people that I've met who just eat
28:26
Speaker 1: what they want, always have done, and everything's fine. So
28:30
Speaker 1: it is it is very changeable as well. I've seen
28:36
Speaker 1: there are some people I meet who have issues with
28:39
Speaker 1: things when they're younger and then fine when they're older.
28:43
Speaker 1: But in terms of diet, how how has that gone
28:48
Speaker 1: for your daughter?
28:49
Speaker 2: So we have had new nutritionists come into our gr
28:54
Speaker 2: to try to give us some guidance on that. But
28:59
Speaker 2: the one thing that I have learned that I feel
29:00
Speaker 2: like that everyone should know with this condition that I
29:03
Speaker 2: didn't know until previously, which would have been very helpful
29:07
Speaker 2: this whole time of knowing, is.
29:09
Speaker 3: That at least for her, where they.
29:12
Speaker 2: Took it took out the intestine that was affected by this.
29:16
Speaker 2: When certain food goes into the colon, a lot of
29:21
Speaker 2: it will just sit there. If it's not something that
29:24
Speaker 2: she can digest or that she's supposed to have, it'll
29:28
Speaker 2: just sit there and collect bacteria and turn into that
29:31
Speaker 2: infection that she kept getting. So this whole time, I
29:35
Speaker 2: thought she was just getting these infections randomly, when it
29:39
Speaker 2: could have had something to do with the food that
29:41
Speaker 2: I was given her, she couldn't tolerate it. She couldn't
29:44
Speaker 2: process it in her stomach because it works differently than
29:47
Speaker 2: anybody else's. And they said that she when she uses
29:51
Speaker 2: the bathroom, it's never going to be formed like everybody
29:55
Speaker 2: else's is formed. It's always going to be more liquid
29:59
Speaker 2: or swirling. So it's just the food that you're giving them.
30:03
Speaker 2: You have to realize what they can process and what
30:07
Speaker 2: they can't, because if it's the.
30:10
Speaker 3: I'm sorry, I'm getting mixed up here, you want to
30:12
Speaker 3: pause it.
30:14
Speaker 2: I'm sorry, I'm trying to get my words right here,
30:18
Speaker 2: like the unprocessed foods or the yeah, the bad foods
30:23
Speaker 2: that we are not supposed to eat. Her friends kids
30:26
Speaker 2: cannot tolerate it at all, like hot dogs and these
30:31
Speaker 2: chicken nuggets and stuff like that. She can't process at all.
30:34
Speaker 2: It'll just sit there and turn it into that infection.
30:37
Speaker 3: So the diet is.
30:38
Speaker 2: Very important on figuring out what she can eat so
30:42
Speaker 2: that it can pass through correctly and doesn't sit there
30:45
Speaker 2: and turn into an infection.
30:47
Speaker 1: Yes, yeah, and that's something that I guess you've just
30:52
Speaker 1: had to learn as you go. In more of a
30:55
Speaker 1: sort of trial and error form.
30:57
Speaker 2: Yes, And then like I said, the GI had mention
31:00
Speaker 2: that to me pre like here recently, so I didn't.
31:04
Speaker 3: Know this all this time. So I feel like other parents.
31:06
Speaker 2: Need to know that so that they can maybe avoid infection,
31:09
Speaker 2: because it really is all about the diet.
31:11
Speaker 3: It's all about what they're able to tolerate.
31:15
Speaker 1: Yeah, absolutely know that that's an excellent tip because again
31:20
Speaker 1: it's something that we probably think about as Hirshbrung's people,
31:25
Speaker 1: as Hirshbrung's parents, and we think, actually, we know diet
31:31
Speaker 1: is important obviously, but just how important I think is
31:38
Speaker 1: again depends on the child, depends on the person, depends
31:43
Speaker 1: on the type of Hirshbrungs. I imagine there's all sorts
31:46
Speaker 1: of caveats all over the place when it comes to
31:49
Speaker 1: when it comes to diet. But I think that is
31:51
Speaker 1: a really important point you make, because it's something again
31:56
Speaker 1: we think about the pain levels, we think about if
32:02
Speaker 1: the tummy's distended, We think about all these types of
32:05
Speaker 1: things when it comes to Hirshprun's and probably diet isn't
32:10
Speaker 1: necessarily something that it's probably quite low down on the list,
32:14
Speaker 1: or can be quite low down on the list.
32:15
Speaker 2: I would imagine, Yeah, when it should be there at
32:19
Speaker 2: the top.
32:20
Speaker 1: Yeah, for sure, because.
32:22
Speaker 2: Anytime that she's given sugar, and you know, as a parent,
32:25
Speaker 2: you want to be able to give your kids a
32:27
Speaker 2: tasty tree, but sugar will also cause that infection. It
32:32
Speaker 2: makes her very sick. And I had to learn that
32:34
Speaker 2: with trial and error as well. So what we do,
32:38
Speaker 2: and I know what we do, is we have a
32:42
Speaker 2: shake that she's supposed to have because she's not eating,
32:45
Speaker 2: she doesn't have an appetite, So we have a shake
32:48
Speaker 2: that we make into a smoothie, and then we put
32:50
Speaker 2: it into a popsicle. We make it into a popsicle
32:53
Speaker 2: and then she's able to eat it like that and
32:56
Speaker 2: that is the only thing that doesn't tear her stomach up.
33:00
Speaker 1: Wow, that's a good idea, actually, it really is.
33:05
Speaker 2: They say to give hal fiber foods, which obviously yes,
33:08
Speaker 2: but you also had to keep in consideration how much
33:10
Speaker 2: gas that that's going to cause, and gas causes them
33:14
Speaker 2: extreme pain.
33:17
Speaker 1: Yeah, yeah, no, it's it's like you said, it's trial
33:22
Speaker 1: and error, and but that's that's a really good idea.
33:25
Speaker 1: If anybody is, you know, struggling with that, then then
33:30
Speaker 1: have a listen to that because that's making it into
33:33
Speaker 1: a popsicle is Yeah, it's something I've never come across
33:37
Speaker 1: that before, So I think that's that's a really really
33:40
Speaker 1: good idea. And you're right with the high fiber because,
33:43
Speaker 1: like I was told constantly throughout my childhood, having high
33:47
Speaker 1: fiber diet was something that's really really important. But with
33:51
Speaker 1: every everything you put in there is going to be
33:54
Speaker 1: some sort of reaction as well, so I guess I
33:57
Speaker 1: guess as well. The other question I want to ask
33:59
Speaker 1: is that, yes, it's trial and error, but I guess
34:04
Speaker 1: also becomes like a balancing act as well.
34:08
Speaker 2: Yes, definitely. And I think and just one more thing
34:12
Speaker 2: I want to touch on. I'm sorry this is all
34:14
Speaker 2: over the place, but with the doctors not really knowing
34:18
Speaker 2: what to really do for this situation, I've been told
34:22
Speaker 2: a lot of the time that I basically have to
34:25
Speaker 2: wait until she is in critical condition for them to
34:27
Speaker 2: do anything. So I'll be sitting here calling them saying,
34:32
Speaker 2: you know, she's not eating, she's not pooping, like something's wrong.
34:35
Speaker 2: How am I going to get nutrition into her body?
34:38
Speaker 2: And they say, well, if she's not dehydrated then it's fine.
34:42
Speaker 2: So they want to wait until she's dehydrated or she
34:46
Speaker 2: has a blockage in her intestines or anything like that.
34:50
Speaker 2: To do anything, they send us straight to the emergency room.
34:52
Speaker 2: But they're only trained for emergencies. Yeah, so I don't
34:58
Speaker 2: like that that we kind of have to wait till
35:00
Speaker 2: they're in critical condition to do anything other than wait
35:03
Speaker 2: months and months and months for procedures like what we're
35:06
Speaker 2: doing right now.
35:07
Speaker 1: Yeah, I mean, that's that's peculiar. I mean, I'm with
35:13
Speaker 1: you on that. That doesn't sound it doesn't sound very healthy.
35:17
Speaker 1: Is that? Do they say? Why?
35:21
Speaker 2: I really believe that it's just the area that I'm
35:24
Speaker 2: in because I'm trying to get sent to a different
35:27
Speaker 2: children's hospital for more studies.
35:31
Speaker 3: They we have that so.
35:32
Speaker 2: In America, they have this specific hospital that has doctors
35:37
Speaker 2: who are trained specifically for Hirshprungs disease, and that's what
35:40
Speaker 2: I'm trying to go to. I think that's another good
35:43
Speaker 2: piece of advice is with this, you don't need to.
35:45
Speaker 3: Have just a typical GI. You need a motility specialist.
35:49
Speaker 2: You need somebody who has dealt with Hirshprungs because it
35:52
Speaker 2: is so rare. But we're not dealing with just a
35:55
Speaker 2: simple GI issue.
35:57
Speaker 1: No, it's it's when people try and tell me or
36:02
Speaker 1: they message me and they go, oh, well, you know,
36:04
Speaker 1: it's the same as IBS, isn't it Like No, absolutely not,
36:10
Speaker 1: Or it's the same as IBD. No, not a chance.
36:14
Speaker 1: So it's it's way way more complex than that, and
36:21
Speaker 1: it has a lot more moving parts. Like you said
36:25
Speaker 1: you need, you don't just need that one specialist. You
36:29
Speaker 1: do need a handful at least.
36:31
Speaker 3: I guess yes for sure.
36:34
Speaker 1: So in terms of that sort of specialist hospital, what
36:40
Speaker 1: can they provide? Can they provide the specialists rather than
36:44
Speaker 1: where you're at now?
36:46
Speaker 2: So where I'm at now, they only wanted to do
36:48
Speaker 2: the colonoscopy and the colonic monometry and then they'll move
36:52
Speaker 2: on to doing other things after this study. But for
36:56
Speaker 2: the Children's hospital in Cincinnati and over here in America,
37:00
Speaker 2: they were wanting us to come to do this exact
37:03
Speaker 2: same thing, but they were also going to go ahead
37:05
Speaker 2: and take a biopsy to see if she still had
37:08
Speaker 2: the affected nerves, to go ahead and get everything done
37:11
Speaker 2: while she's under in one go instead of dragging this out,
37:15
Speaker 2: because that's kind of how it is at this point.
37:17
Speaker 2: But they told me we're going to check the motility
37:21
Speaker 2: and if we suspect that there's damage nerves, then we'll
37:25
Speaker 2: do a biopsy. And I'm just like, so what, we're
37:29
Speaker 2: just kind of having to let her suffer longer than
37:31
Speaker 2: needs need be.
37:33
Speaker 1: Yeah, And that's the difficult thing with the biopsy again,
37:36
Speaker 1: talking to a lot of people as I do, people
37:39
Speaker 1: are very hesitant to biopsy and you can't I can
37:43
Speaker 1: understand why to a certain thing because it is very
37:45
Speaker 1: invasive and it is, you know, is something that's they
37:51
Speaker 1: kind of try and do as an almost lost resort,
37:54
Speaker 1: I guess. But that is difficult because I mean, you know,
37:58
Speaker 1: she has her sprungs. You know, it's it's not it's
38:01
Speaker 1: not like we're we're testing for we're testing when we're
38:06
Speaker 1: testing first ones, you know she has. It's just I guess,
38:09
Speaker 1: trying to find out how much of the colon's affected.
38:13
Speaker 2: Yeah, if there's still any affected after that first surgery.
38:16
Speaker 1: Yeah, absolutely. And if we just sort of touched on
38:19
Speaker 1: just what we've got sort of five or ten minutes,
38:23
Speaker 1: the condition itself, I know you wanted to mention a
38:27
Speaker 1: little bit just on its invasiveness because it is it is,
38:32
Speaker 1: and that again, there's no way of getting around it
38:36
Speaker 1: really in terms of some of the procedures you have
38:39
Speaker 1: to go through, the surgeries you have to go through.
38:41
Speaker 1: What are your sort of thoughts on that.
38:45
Speaker 2: So for me, I went through things whenever I was
38:48
Speaker 2: a child. That makes this difficult to deal with in
38:51
Speaker 2: ways you could probably imagine, so doing the dilations and
38:57
Speaker 2: the irrigations, just having to you to mess with her
39:00
Speaker 2: in an area that probably isn't comfortable for her, That's
39:03
Speaker 2: what I feel like is mostly invasive. And so her
39:06
Speaker 2: father is the one who has to do this for her,
39:09
Speaker 2: And just imagine how that is for a little girl
39:11
Speaker 2: to have to to have her dad do something like that,
39:15
Speaker 2: and imagine how hard it is for him to have
39:17
Speaker 2: to be the one to do it because it's very
39:19
Speaker 2: uncomfortable for him as well.
39:21
Speaker 1: Absolutely, yeah, And I guess I think that that's another
39:24
Speaker 1: thing that is a tricky one to process if you're
39:31
Speaker 1: not Hirshbrung's parent or you don't have to do something
39:35
Speaker 1: similar to that to try and get that across. How again,
39:40
Speaker 1: when you're talking about things like dilations, when you talk
39:42
Speaker 1: about things like enemas and wash outs and all of
39:46
Speaker 1: those things, they are very invasive and what's probably not
39:53
Speaker 1: known as much is, as we said before, the traumatic
39:58
Speaker 1: side of it and the the sort of mental after
40:04
Speaker 1: effect of that. And I think it's just not as
40:09
Speaker 1: much information out there about it or people potentially willing
40:12
Speaker 1: to come forward and talk about it.
40:14
Speaker 3: Yeah, because it's very uncomfortable to talk about it really.
40:17
Speaker 1: Is hugely and again don't blame anyone from but not
40:22
Speaker 1: wanting to talk about it or almost sort of blocking
40:25
Speaker 1: that out of the mind. But that is and I
40:28
Speaker 1: think is that somewhere sort of down the line, you
40:32
Speaker 1: think probably needs support for that as well.
40:37
Speaker 2: Yes, for sure, And that's why we've already started therapy
40:41
Speaker 2: now because I know that it's going to affect her
40:44
Speaker 2: in the long run, because she's already having like feelings
40:49
Speaker 2: within herself, not feeling like she is like everybody else.
40:54
Speaker 1: That's a tricky one. Yeah, that's a tricky one because
40:58
Speaker 1: in a lot of ways, we are like everybody else
41:03
Speaker 1: in terms of you know, if you looked at us,
41:07
Speaker 1: I'd say us as in Hirshprung's people, Hirshprung's patients, if
41:11
Speaker 1: you looked at us, we are totally normal. You know,
41:14
Speaker 1: you wouldn't You can't see someone in the street and go,
41:17
Speaker 1: that's a Hirshprungs person. You know, it doesn't it's not you.
41:22
Speaker 1: You can't. You know, it's not like you've got a
41:24
Speaker 1: broken leg or you know, or broken art or whatever.
41:28
Speaker 1: You can't point someone out and say that's a Hirshprungs person.
41:32
Speaker 1: But a lot of those feelings that we have, I
41:36
Speaker 1: guess are internal. And that's the really difficult bit, I guess,
41:42
Speaker 1: because they are as important as the person you know
41:47
Speaker 1: who has the quote unquote physical disability. I mean, is
41:51
Speaker 1: it is a physical condition obviously, but a lot of
41:54
Speaker 1: those a lot of those issues are internal. You just
42:00
Speaker 1: don't see.
42:00
Speaker 3: Them, do you, right, and affect you mentally for sure?
42:04
Speaker 1: Oh yeah, definitely definitely. And that's really good though, that
42:09
Speaker 1: you are being proactive in terms of saying, Okay, this
42:14
Speaker 1: might be an issue down the line, so we're going
42:18
Speaker 1: to get ahead of the situation. And I always, yeah,
42:23
Speaker 1: I think that's a good thing. I think that's a
42:24
Speaker 1: really really good thing.
42:26
Speaker 3: Right.
42:27
Speaker 2: And then just last thing, they always they also say that,
42:30
Speaker 2: you know, kids are not supposed to have X rays,
42:33
Speaker 2: or at least with my other kids, I've heard that, Well,
42:35
Speaker 2: we don't want to do X rays because of the radiation.
42:39
Speaker 2: But with these kids, I mean they can sometimes get two, three,
42:42
Speaker 2: four X rays just in a.
42:43
Speaker 3: Day or two.
42:46
Speaker 1: Yeah, yeah, most definitely. Were you given a reason as
42:49
Speaker 1: to why no X rays or.
42:50
Speaker 3: Is it just the radiation, just the radiation exposure.
42:54
Speaker 1: Yeah, okay again, yeah, it's a difficult one. That it's
42:59
Speaker 1: a really difficult one. Yeah, but then again, if you
43:04
Speaker 1: need it, you need it, don't you.
43:05
Speaker 2: It's it's yeah, you just kind of have to weigh
43:08
Speaker 2: in the Yeah, the options.
43:11
Speaker 1: There, absolutely, so. It is is very much about I
43:14
Speaker 1: guess one thing we have learned from this is its balance,
43:17
Speaker 1: its trial and error and perseverance as well. And that's
43:21
Speaker 1: something that certainly you seem to have in and your
43:25
Speaker 1: daughter have in spades. That that perseverance to you know,
43:29
Speaker 1: push through whatever's coming next, which we need. Resilience. It's
43:34
Speaker 1: so so important. Yes, definitely, and and just very quickly,
43:42
Speaker 1: it's just while we've got one more minute. In terms
43:45
Speaker 1: of the future, I know you talk to me from
43:47
Speaker 1: a hospital room, herb as the moment is not necessarily
43:51
Speaker 1: the place you want to be. But in terms of
43:54
Speaker 1: the future, how do you see the future?
43:59
Speaker 2: I see us getting some answer soon and her being
44:03
Speaker 2: able to eat again without the There is a possibility
44:06
Speaker 2: of G two right now, but we are going to
44:09
Speaker 2: speak into existence that she is not getting a G tube,
44:12
Speaker 2: that we are going to work with her and feeding
44:14
Speaker 2: therapy and she's going to eat, and she's going to
44:17
Speaker 2: be able to play outside without getting exhausted.
44:22
Speaker 3: It's going to be okay. Everything's going to be all right.
44:24
Speaker 1: Absolutely, And I know it goes without saying, but I'll
44:27
Speaker 1: say it anyway that I wish her the very very
44:30
Speaker 1: best with that and really hope that all of those
44:34
Speaker 1: things come come true and get rid of the G
44:38
Speaker 1: tube and go be quote unquote you know, do everything
44:43
Speaker 1: that everybody else can do, which is exactly what we want.
44:47
Speaker 1: But I want to say thank you so so much,
44:49
Speaker 1: because I know you've been incredibly busy today. Thank you
44:53
Speaker 1: so so much for joining me, and I wish you
44:56
Speaker 1: all the very best.
44:57
Speaker 3: Thank you so much.
45:00
Speaker 1: Thank you for listening to the podcast. Find us on
45:05
Speaker 1: Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes
45:11
Speaker 1: on Spotify by searching Tom's Hirshbrun's podcast