Latest / Tom's Hirschsprung's Podcast / Episode 127 - With Zandra Thomas

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Episode 127 - With Zandra Thomas · 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
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in.
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Speaker 2: Hello, and welcome to episode one hundred and twenty seven
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Speaker 2: of Tom's Hirshbruns Podcast. I'm delighted this afternoon to be
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Speaker 2: joined by Xandra Thomas. Sandra, Welcome to the podcast. Bye,
1:00
Speaker 2: thank you so much for coming on. And We've got, yeah,
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Speaker 2: really interesting hirsh sprung story to talk through this afternoon.
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Speaker 2: So I'm gonna hand over to you because my voice
1:11
Speaker 2: is going so I'm gonta hand over to you. I
1:14
Speaker 2: guess would you like to take us back to the beginning?
1:19
Speaker 3: Sure, yeah, absolutely, I remember like it was yesterday. So
1:26
Speaker 3: I guess one of the things I really caught me
1:28
Speaker 3: whenever I first had him, you know, just thinking of
1:30
Speaker 3: having kids before, and I was just imagining like this
1:33
Speaker 3: typical birth because I've had two kids before, and then
1:39
Speaker 3: you know, things went downhill pretty quickly. I'd say around
1:42
Speaker 3: day two of us being in the hospital, maybe it
1:44
Speaker 3: was one. Around twenty four hours, he started like vomiting
1:51
Speaker 3: and it was more like a mucus And we got
1:55
Speaker 3: lucky because there were two nurse is there at the time.
2:02
Speaker 3: They're like, they didn't have a lot of people giving birth,
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Speaker 3: and so we got lucky. I had my own nurse
2:06
Speaker 3: and he had his own nurse, and the nurse that
2:10
Speaker 3: was over me, I kept saying, I'm like, he's just
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Speaker 3: like has a lot of mucus and he's kind of
2:15
Speaker 3: like choking on it a little bit. And she's like, oh,
2:17
Speaker 3: you he's fine. You know what to do. Just pat
2:19
Speaker 3: him on the back. You've had kids before. And I
2:21
Speaker 3: was like, okay, you're right, I'm just a little nervous.
2:26
Speaker 3: And then he kept doing it and it was like
2:28
Speaker 3: glob just kind of coming out of his mouth and
2:30
Speaker 3: hid in the floor. So I reached out to his nurse.
2:34
Speaker 3: You know, I'm like, I'm not really sure you know
2:36
Speaker 3: what's going on, but I'm a little nervous about it,
2:38
Speaker 3: and she's like, you know what, has belly just looks
2:41
Speaker 3: really big. She's like, this just doesn't look normal, and
2:44
Speaker 3: I'm like, I don't know. Until I felt I'm like
2:47
Speaker 3: I don't know, and she like decided to look at
2:53
Speaker 3: him more and look into it more and definitely was
2:58
Speaker 3: watching him, and all I remember at one point is
3:01
Speaker 3: just like having them on by like shirt, just patting
3:04
Speaker 3: his back and he started vomiting. And when he was vomiting,
3:08
Speaker 3: it was like the bile or like the green that
3:12
Speaker 3: they're concerned about. All the while, they were really concerned
3:15
Speaker 3: like why he hadn't had his first battle movement, which
3:19
Speaker 3: is also concerning, right, you need to have your first
3:22
Speaker 3: down movement. They're really looking for that the entire time
3:27
Speaker 3: when I had him, I was at a hospital that
3:29
Speaker 3: doesn't specialize in like children, right, just for women having babies, right.
3:34
Speaker 3: So we had to transfer to a whole different hospital.
3:40
Speaker 3: And that was nerve wrecking for me because I feel
3:44
Speaker 3: like I didn't get that downtime after having a baby, right.
3:47
Speaker 3: I just had to get up and go get up,
3:50
Speaker 3: go to the next hospital, pack all my things. It
3:53
Speaker 3: was really stressful, honestly. We get to the new hospital
4:00
Speaker 3: and his doctor, I can't remember his name, but he
4:03
Speaker 3: was like, does he like, you have any history of
4:06
Speaker 3: Hirsprungs disease, and I'm like, no, like I don't even
4:08
Speaker 3: know what they keep talking about, Like what is that.
4:12
Speaker 3: I had no clue what her Sprung's disease was, So
4:16
Speaker 3: I'm like, we've had, you know, bow other bowel issues
4:18
Speaker 3: in my family. I don't have anything. I just had
4:21
Speaker 3: no idea. So almost immediately like he needs to have
4:27
Speaker 3: emergency surgery to figure out what's going on. They thought
4:30
Speaker 3: initially that his bow was like I think twisted or something,
4:36
Speaker 3: so I think, like, upon take him into surgery, they
4:40
Speaker 3: they were gonna do like a uh, it's an enema
4:43
Speaker 3: type thing. It's like to like see how his bows
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Speaker 3: are moving around and looking under like an X ray
4:50
Speaker 3: or something. And as soon as they put like the
4:55
Speaker 3: tube up his bottom, he pooped and they were like,
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Speaker 3: that's really good sign that you know something's going on.
5:04
Speaker 3: But they still moved forward with the surgery to kind
5:06
Speaker 3: of figure out because they've seen that his bowels were
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Speaker 3: not twisted. They're like, it looks fine, they're not twisted.
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Speaker 3: So they moved forward with like an exploratory surgery. And
5:18
Speaker 3: this was when he was two days old. It was really,
5:20
Speaker 3: oh my gosh, I couldn't. I feel like I was
5:22
Speaker 3: really stressed out in those moments to even like remember
5:25
Speaker 3: everything because it was really stressful. But yes, he had
5:31
Speaker 3: the surgery. It took hours. I felt like it was. Yeah,
5:34
Speaker 3: it was hours, and he came out. I won't remember
5:39
Speaker 3: them like taking the like the uh is that the incubator,
5:44
Speaker 3: like I don't even know. It's when it's in his
5:46
Speaker 3: mouth to like keep them breathing and stuff during surgery.
5:51
Speaker 3: I can't think of the proper word for it right now.
5:53
Speaker 3: But when they took it out, he wasn't ready to
5:55
Speaker 3: breathe on his own, and boom, they had to like
5:58
Speaker 3: bag him giving him air. And that's, oh my gosh.
6:02
Speaker 3: I was like, is my son laying here? Life was
6:04
Speaker 3: like right now? And he really was. They had to
6:06
Speaker 3: bag him up until they could put the tubing back
6:08
Speaker 3: in his mouth to breathe for him. And he was
6:13
Speaker 3: really having a hard time maintaining like his body temperature
6:16
Speaker 3: and all the things. And quickly they realized that it
6:20
Speaker 3: wasn't just which we will learn at some point was Hirsprung's.
6:24
Speaker 3: He was having heart issues, so not really sure where
6:29
Speaker 3: that came from. His heart was literally like beating out
6:33
Speaker 3: of his chest you could see it, and he was
6:36
Speaker 3: really pale and just very very very pale and like bluish.
6:41
Speaker 3: So they had to life light him from that hospital
6:45
Speaker 3: to another hospital two hours away, which was really, really,
6:51
Speaker 3: really nerve wrecking. It was like the middle of the night.
6:57
Speaker 3: It was the middle of the night when they called,
7:00
Speaker 3: and I had just went home to lay down. I'm like,
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Speaker 3: I'm gonna go to sleep and just get some rest.
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Speaker 3: I know he's in good hands. And then as soon
7:09
Speaker 3: as I close my eyes or calling me like, we're
7:12
Speaker 3: concerned he needs to go, we don't have They didn't
7:15
Speaker 3: have a pediatric heart surgeon there, and so we had
7:18
Speaker 3: to lifelight, so they paralyzed him. I'll never forget that.
7:23
Speaker 3: I had to like sign all these papers basically saying
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Speaker 3: if he didn't make it, then I was like okay
7:27
Speaker 3: with it, you know. But they had to paralyze him
7:31
Speaker 3: so that he didn't pull out any of his tubings
7:33
Speaker 3: and things on the way to the hospital. So I
7:38
Speaker 3: drove there two hours away speeding at least that's what
7:43
Speaker 3: it felt like. And then when we got there, we
7:46
Speaker 3: had to wait quite a bit of time before we
7:49
Speaker 3: could see him because they were hooking him up to
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Speaker 3: all this medication. I can remember him having like rows
7:57
Speaker 3: and rows of IVY medications just connected to him to
8:01
Speaker 3: help maintain his heart health. It was, oh my gosh,
8:07
Speaker 3: really really hard to see because he did lay there
8:09
Speaker 3: lifeless for I mean, it felt like days before he
8:12
Speaker 3: started to perk up and the medicine actually worked for
8:16
Speaker 3: his heart and we stayed on that heart unit. I'd
8:21
Speaker 3: say it was thirty days. So with his first month
8:27
Speaker 3: of his life, we were in the hospital and we
8:31
Speaker 3: quickly learned how to do irrigations at the hospital really
8:37
Speaker 3: new because they didn't want to do surgery on him
8:39
Speaker 3: because he had heart issues. So we were learning all
8:44
Speaker 3: the things about what irrigations are and how do they work.
8:49
Speaker 3: And it's really different than like looking at a bottle
8:54
Speaker 3: like an animal bottle and knowing how to give an anima,
8:57
Speaker 3: which I've done. It's different, so it's not the same.
9:01
Speaker 3: So we did that, I don't know how these tigns
9:04
Speaker 3: and learned that, but they weren't ready to do any surgeries.
9:08
Speaker 3: So during that time there at that hospital, we've we
9:12
Speaker 3: got a lot of different diagnosis. We got sleep app NA,
9:15
Speaker 3: you know, we were learning about how to give him
9:18
Speaker 3: shots because he ended up with a blood clot. The
9:23
Speaker 3: because he had a pickline right after a while, they
9:25
Speaker 3: won't let you have a regular ivy, so he had
9:28
Speaker 3: that pickline. It caused a goodness a blood lot and
9:36
Speaker 3: we had to give him like injections in his leg
9:39
Speaker 3: blood thinners. We were learning that he kind of was eating,
9:46
Speaker 3: learned to eat a little bit.
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Speaker 2: Uh.
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Speaker 3: That took a little bit of time because he was
9:52
Speaker 3: using the ngtube and that was actually going down into
9:57
Speaker 3: his stomach right. But obviously at first they use it
10:00
Speaker 3: to like get things out, but as he got better,
10:03
Speaker 3: then we were like putting breast milk at it to
10:07
Speaker 3: feed him through their bussy of flu. So thirty days
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Speaker 3: of a lot of different things, we eventually got to
10:19
Speaker 3: go home, which was nice. And with that time of
10:24
Speaker 3: being home, irrigations were really really, really, really really challenging.
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Speaker 3: That's something I really haven't had a chance to talk
10:30
Speaker 3: about myself because I don't think people will understand that
10:35
Speaker 3: it's so it's so different. But we spent i'd say,
10:41
Speaker 3: like six months doing that because I wanted him to heal,
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Speaker 3: you know, get better, get off his heart medicines, or
10:48
Speaker 3: at least kind of come off his blood clotmets, and
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Speaker 3: at six months we ended up back in the hospital
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Speaker 3: to do the pool through and that's just like getting
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Speaker 3: the bad right, getting the bad, bad intestines out to
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Speaker 3: I guess the bad the stuff that doesn't work out,
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Speaker 3: And we did that and that went downhill pretty quick. Actually,
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Speaker 3: it made me really not I don't know. I think
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Speaker 3: it does matter what doctors we see, and you know,
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Speaker 3: there's doctors out here that really do specialize on Hirschwum's disease,
11:28
Speaker 3: and so I do realize that I'm scared though, because
11:33
Speaker 3: of what happened when he had this whole through. He
11:37
Speaker 3: had it and almost immediately just was not like his
11:42
Speaker 3: happy self anymore. And when he finally came out of it,
11:46
Speaker 3: I was just like, this is not my Like, it's
11:47
Speaker 3: not the baby that I knew six hours ago, like
11:51
Speaker 3: at all, was not the same kid. But I'm like,
11:56
Speaker 3: you know what, I tried to be like optimistic and
11:59
Speaker 3: just like understand that this is gonna be a healing
12:03
Speaker 3: journey for him. But we ended up spending another month
12:07
Speaker 3: in the hospital because of all the complications. I think shoot,
12:12
Speaker 3: during that time, he had two or maybe three surgeries,
12:18
Speaker 3: because I think they went back in to like see
12:20
Speaker 3: if everything looked good because his belly was so distended
12:25
Speaker 3: and he wasn't having a bowel movement, and then he
12:30
Speaker 3: just still wouldn't get better. So they did another surgery
12:33
Speaker 3: and that ultimately ended into his colostity placement, his astomey placement,
12:42
Speaker 3: and that I mean that basically sent us home kind
12:45
Speaker 3: of because him being in the hospital so long. They
12:48
Speaker 3: don't let you eat whenever you do surgeries, and so
12:52
Speaker 3: for a really long time he didn't eat and we
12:55
Speaker 3: didn't realize he had the developmental delays that he has,
13:00
Speaker 3: but with him not eating, he just chose not to
13:02
Speaker 3: eat anymore. He was like, well, if I don't have
13:04
Speaker 3: I can't eat that I'm not gonna eat, and so
13:06
Speaker 3: he wouldn't eat and that kept us in the hospital
13:09
Speaker 3: even longer. Yeah, they wanted to like make him eat
13:14
Speaker 3: every like two hours, and he just wasn't wanting to eat.
13:18
Speaker 3: So then, like I know, the nurses can get really
13:21
Speaker 3: busy in the hospital and so they were just like
13:24
Speaker 3: kind of hooking it up to the pump and putting
13:26
Speaker 3: it through his tube instead of like trying to feed him.
13:29
Speaker 3: So it really did drag out our time there but
13:33
Speaker 3: he just got that in YouTube, and they sent him
13:36
Speaker 3: home with the feeding tube, and that was a whole
13:38
Speaker 3: other journey. I think we were home doing that for
13:43
Speaker 3: like I'd say it was like maybe a week or two,
13:45
Speaker 3: because I finally was like, you know what, We're not
13:48
Speaker 3: gonna feed him every two hours. We're just gonna slow
13:50
Speaker 3: down on feeding him and let him cry when he's
13:53
Speaker 3: hungry and feed him. And then he started to eat,
13:58
Speaker 3: so our awesome journey was great. That was another six
14:01
Speaker 3: months of awesome life. It's really changed how he and
14:07
Speaker 3: just in general his temperament and how happy he is.
14:13
Speaker 3: But then the doctor was like, if we've got to
14:15
Speaker 3: reverse this, he can't live with us forever. And I'm like,
14:18
Speaker 3: you know what, You're right, he can. I'd rather do
14:20
Speaker 3: it sooner than later. Let's get it done, all right.
14:25
Speaker 3: So we go back six months later, so he's about
14:29
Speaker 3: a year old this time, and we get that reversal,
14:34
Speaker 3: and I unfortunately couldn't stay. I had to work. I
14:39
Speaker 3: had just started a job, and I teach, and so
14:42
Speaker 3: I can't just like cancel class, So I had dad go,
14:47
Speaker 3: and my mom was kind of in and out as
14:49
Speaker 3: well during that time. And I remember his dad telling
14:52
Speaker 3: me after a surgery, he was just he was, uh,
14:55
Speaker 3: he was a little fussy, so he just kind of
14:56
Speaker 3: set him up. And when he set him up after
14:59
Speaker 3: that reversal, his incision just busted open and all the
15:03
Speaker 3: poop just came out. And obviously that was an immediate
15:10
Speaker 3: emergency surgery because you don't want to have poop in
15:14
Speaker 3: your body cavity. It can cause you to go septic.
15:19
Speaker 3: And I was devastated. I was so, like I was.
15:22
Speaker 3: My anxiety was through the roof during that time because
15:27
Speaker 3: for one, because I wasn't there, and I just was like,
15:30
Speaker 3: you know what, I have to go. I need to
15:31
Speaker 3: go check on my son, make sure he's good. He
15:35
Speaker 3: had his surgery for a new placement of the ostome,
15:42
Speaker 3: and during that time he didn't he wasn't doing like
15:47
Speaker 3: the best. Like I don't really know exactly what was
15:50
Speaker 3: going on with him, but they like had to give
15:55
Speaker 3: him a blood transfusion and he had all these goodness,
16:00
Speaker 3: all these tubes. He had the ostomy and then he
16:02
Speaker 3: had a cather and he also ended up getting an
16:08
Speaker 3: infection or something during that time, like in his back.
16:11
Speaker 3: It was really weird. I don't know how he got
16:13
Speaker 3: the infection, but he had all these tubes, so like
16:15
Speaker 3: when they did the blood transfusion, you've just seen all
16:19
Speaker 3: the blood come out of all of the tubes and
16:23
Speaker 3: that that was just that almost scary and you know,
16:26
Speaker 3: just seeing that making you really feel like that, you know,
16:31
Speaker 3: is my son gonna live through this? Is he gonna
16:33
Speaker 3: make it? Because doctors are gonna be like very professional,
16:37
Speaker 3: you know, they're not gonna tell you they're concerned like that.
16:40
Speaker 3: But with time, he definitely got better. It just took
16:48
Speaker 3: another month, so he's in the hospital for another month
16:50
Speaker 3: before he you know, was able to go home. And
16:56
Speaker 3: we've had that ostome ever since. Ever since, I have
17:04
Speaker 3: really denied the doctor even coming back and doing another
17:08
Speaker 3: biopsy on him because of the devastating surgery. Is that
17:15
Speaker 3: we've had pretty scary to think about. So I've i
17:21
Speaker 3: advocated and I have talked about just keeping his ostinity
17:25
Speaker 3: for now, and his doctors like, I'm okay with that,
17:27
Speaker 3: but we just don't usually do this. I'm like, what
17:32
Speaker 3: you're gonna do with him? So why?
17:37
Speaker 2: I mean, well, when when people say, oh, we don't
17:40
Speaker 2: usually do this, well, hirshprungs is not a usual condition.
17:44
Speaker 2: I mean, you're right, yeah, and so like I mean,
17:48
Speaker 2: there's there's so many different types of hirshprungs, ways of
17:53
Speaker 2: managing certain parts to do with hirshprungs. So I think,
18:00
Speaker 2: you know, I'm a big advocate for mother's instinct saved
18:03
Speaker 2: my life. So yeah, you know, if if it's it's
18:08
Speaker 2: one of those things where, yeah, hirshbrungs is not it's
18:12
Speaker 2: not a it's not like asthma. It's not like diabetes.
18:16
Speaker 2: It's not a it's not a condition that you'll see
18:18
Speaker 2: every day. I mean, even doing what I do here,
18:21
Speaker 2: it's just not a condition you'll see every day. So yeah,
18:24
Speaker 2: I I yeah, no, it's it's it's a it's a
18:28
Speaker 2: it's an odd one. But in terms of really the
18:31
Speaker 2: hirshbrungs itself, what were you ever told what type of
18:36
Speaker 2: hirshprungs your son has?
18:38
Speaker 3: Sure, Yeah, that was a It's a really good question
18:40
Speaker 3: because I've noticed it a lot just kind of researching
18:42
Speaker 3: and looking it up. He never told me. The doctor
18:45
Speaker 3: has never told me. I know he said that he
18:47
Speaker 3: didn't have to cut out a lot, but I don't
18:48
Speaker 3: know what that means. Yeah, so I imagine it was
18:53
Speaker 3: just like a short segment, but that doesn't mean that's
18:56
Speaker 3: what it was. I really haven't been told the exact.
19:00
Speaker 2: Know, it's interesting and to some people. I mean, I
19:03
Speaker 2: think it kind of depends on where you are, sometimes
19:06
Speaker 2: what country you're in, what hospital you're in, whether they
19:09
Speaker 2: actually give it a name like short or log segment
19:13
Speaker 2: or whatever. And sometimes they'll tell you we took out
19:17
Speaker 2: X amount of you know, centimeters or whatever. So I
19:22
Speaker 2: think sometimes it can depend on where you are and whatnot,
19:26
Speaker 2: but they never told you sort of we took out
19:28
Speaker 2: this much and or it's called this or whatever.
19:32
Speaker 3: Well, it was just like it wasn't a lot. That's
19:35
Speaker 3: what I remember. Yeah, being stressed out in those moments.
19:40
Speaker 3: Sometimes you don't even you know what I mean, Like
19:43
Speaker 3: it's just so much it once it was really hard
19:46
Speaker 3: to even focus. But that would be something I thought
19:48
Speaker 3: i'd remember. But it was definitely just it short. It
19:52
Speaker 3: wasn't a lot.
19:53
Speaker 2: That's what I thought, might as well be short segment
19:56
Speaker 2: then possibly who okay, but and there was definitely I know,
20:01
Speaker 2: going back to what he said at the beginning about
20:04
Speaker 2: the mucus and the bile and the distended tummy, I
20:07
Speaker 2: mean all all of those point to sort of classic hirshprungs,
20:14
Speaker 2: all of those three. But I guess that was really
20:17
Speaker 2: good of the hospital that they they noticed and they're
20:21
Speaker 2: guest having two nurses they're probably very helpful. But was
20:26
Speaker 2: that sort of reassuring for you where they noticed quite
20:30
Speaker 2: quickly that even though they might not have been able
20:32
Speaker 2: to diagnose that this would be hirshprungs, but they noticed
20:35
Speaker 2: that something was a miss.
20:38
Speaker 3: Yeah, I'm glad that they noticed. I think really that
20:40
Speaker 3: red flag was like, oh, he's not pooping, you know
20:43
Speaker 3: what I mean, he didn't have the bound movements, and
20:45
Speaker 3: so they were like already kind of looking at him.
20:49
Speaker 3: I do think that him having that second nurse helped
20:52
Speaker 3: like move things along in the right direction. Otherwise I
20:55
Speaker 3: think it would have been it had taken us a
20:57
Speaker 3: little longer to figure it out, for sure.
21:01
Speaker 2: Yeah, you know, it's definitely most definitely, And in terms
21:05
Speaker 2: of the ostom itself, I know you've said that that's
21:10
Speaker 2: really improved his quality of life over the years. Apart
21:17
Speaker 2: from so what you mentioned so far, is there anything
21:21
Speaker 2: else you kind of thought this has been has been
21:24
Speaker 2: really helpful having the ostomy because.
21:25
Speaker 3: Of X Y dad, sure, So he he's recently diagnosed
21:33
Speaker 3: with autism within the last year, and so I think
21:38
Speaker 3: that our party training side of things are kind of
21:41
Speaker 3: on hold. So it does help that he has the OSome,
21:46
Speaker 3: so that we're not so focused on like the diaper side,
21:50
Speaker 3: because sometimes people with autism, depending on the severity, can
21:55
Speaker 3: be kind of not the great when it comes to
21:57
Speaker 3: like diapers and like what's happening with hands and things
22:00
Speaker 3: like that. So I feel like that definitely has been
22:04
Speaker 3: a blessing. It also helps. He's non verbal, he doesn't talk,
22:09
Speaker 3: and so I've kind of thought about how if we
22:11
Speaker 3: ever did reverse how he would get that rash on
22:14
Speaker 3: his bottom. And I can't imagine not being able to
22:19
Speaker 3: communicate him with him about like his pain levels and
22:22
Speaker 3: things like that when I know he's like in active
22:25
Speaker 3: pain or whatever, you know what I mean, which is
22:28
Speaker 3: another reason why I really am not happy or I
22:31
Speaker 3: don't want to send him back through surgery because the
22:33
Speaker 3: communication's not there. We don't have a great communication style yet.
22:37
Speaker 2: Yeah, that makes absolute sense. So as well as obviously
22:43
Speaker 2: on top of that, with the hirshprugs and the autism
22:46
Speaker 2: as well, it's obviously quite a lot to cope with.
22:50
Speaker 3: It is a lot. It's a lot. It's been a lot.
22:54
Speaker 3: He I feel like he just keeps getting a a
22:57
Speaker 3: new diagnosis, just one thing after another. I think recently
23:03
Speaker 3: this was more recently he was diagnosed with a genetic
23:07
Speaker 3: mutation that kind of basically his neurologist told me, it
23:10
Speaker 3: makes sense why all the things that are going on
23:13
Speaker 3: with him is going on because he also has seizures,
23:16
Speaker 3: he has epilepsy. Yeah, but the genetic mutation, I never
23:22
Speaker 3: heard of it. It was it's called E E F
23:24
Speaker 3: one A two and it's just a like a I
23:29
Speaker 3: always call a typo, like there's a typo in that
23:33
Speaker 3: mute or that gene which has caused this mutation. And yeah,
23:37
Speaker 3: he's he's a lot. His kid's got a lot going on.
23:40
Speaker 3: And I always tell people you can't really look at
23:42
Speaker 3: him and tell you you would never have any clue
23:45
Speaker 3: that he'd have something going on. But he's got a
23:47
Speaker 3: lot going on internally for sure. Wow.
23:50
Speaker 2: I mean that is the thing with with I guess
23:53
Speaker 2: Harshprungs specifically that if you were to look at us,
23:58
Speaker 2: you know, you wouldn't. Okay that there's sometimes there's the
24:01
Speaker 2: ostomy bag or stoma or whatever. But apart from that,
24:06
Speaker 2: you would look at us and you wouldn't You can't
24:08
Speaker 2: pick a Hirshbruns person out of a lineup at all.
24:11
Speaker 3: You wouldn't be Yeah, you wouldn't be able to at all.
24:16
Speaker 3: And I know there's always allays lifelong issues too that
24:19
Speaker 3: come with it, you know what I mean. Like, it's
24:21
Speaker 3: not like, oh I had my colon some of my
24:26
Speaker 3: colan removing it. I'm just living this happy life. I've
24:29
Speaker 3: read that people live with issues even outside of their pool.
24:33
Speaker 2: Through Yeah, yeah, I think that is. That is the
24:36
Speaker 2: thing that everybody is very much different when it comes
24:39
Speaker 2: to Hirshbruns, very much different, whether you and that. That's
24:43
Speaker 2: whether you got short, whether you've got long, whether you've
24:45
Speaker 2: got tytoklomic, whatever you've got. Everybody is very much, very
24:51
Speaker 2: much different, which I guess kind of keeps me in
24:54
Speaker 2: a podcast because if everything was the same, I wouldn't
24:56
Speaker 2: have any of avery w worth I supposed to do. Yeah,
25:01
Speaker 2: but this the genetic mutation that you talked about. Sure
25:07
Speaker 2: was that discovered through like genetic testing or was that
25:10
Speaker 2: discovered through something else?
25:13
Speaker 3: Yeah? So when he was first born, he had the
25:15
Speaker 3: genetic testing and they didn't see anything, but he has
25:19
Speaker 3: continued to have these issues. So really the big red
25:21
Speaker 3: flag was he has hypotonia in his legs, so he's
25:26
Speaker 3: got really thin legs, like he doesn't have the muscle
25:29
Speaker 3: tone like a typical person would and it has caused
25:32
Speaker 3: him to not while he just really learned the walk
25:35
Speaker 3: this year and he's three. So yeah, we had more
25:39
Speaker 3: genetic testing done because we couldn't figure out what was
25:42
Speaker 3: going on, like unable to like put a figure to it.
25:46
Speaker 3: And more recently he had it re rean out you
25:49
Speaker 3: know what, reanalyzed, Yes, yes, reanalyzed and they spound this
25:57
Speaker 3: genetic mutation and so we asked, haven't seen the genetic
26:02
Speaker 3: doctor for it, but when we do go see we'll
26:04
Speaker 3: kind of talk about what treatment looks like and things
26:06
Speaker 3: like that.
26:07
Speaker 2: Wow. Yeah, that's that's what I said before. It's an
26:11
Speaker 2: awful to handle at such a young age. It's so
26:16
Speaker 2: much Yeah, such a Yeah, Well that's that's honestly the
26:22
Speaker 2: main thing, isn't it. That's the main thing. And I
26:26
Speaker 2: guess hairsprungs might be one of those things where we
26:32
Speaker 2: maybe don't quite realize what's going on at such a
26:35
Speaker 2: young age until we're maybe a little bit older and
26:37
Speaker 2: we sort of can understand it a bit more because
26:39
Speaker 2: it's quite a lot take in it is.
26:43
Speaker 3: And I still don't always always understand all of his symptoms,
26:46
Speaker 3: you know what I mean, because I can't communicate with him.
26:48
Speaker 3: I learned a lot through like resources.
26:51
Speaker 2: Yeah, yeah, most definitely. And with those diagnoses. Was I
26:59
Speaker 2: know you mentioned when you see something that you're slightly
27:04
Speaker 2: concerned about, are you then sort of happy that you
27:08
Speaker 2: get the diagnosis from that? If you see what I mean?
27:12
Speaker 3: Yeah? Like if yes, are you saying like, if I
27:14
Speaker 3: see something going on and I'm not really sure what
27:16
Speaker 3: it is, is the diagnosis like validation? Yes?
27:21
Speaker 2: Yes?
27:23
Speaker 3: Yeah. Initially I was seeking like a diagnosis for his
27:28
Speaker 3: delays because he wasn't like walking or talking or crawling
27:32
Speaker 3: like a typical kid would. And so when I got
27:35
Speaker 3: the autism diagnosis, I was like, ah, relief. But then
27:38
Speaker 3: I'm like, why are his legs so skinny? You know,
27:41
Speaker 3: like why can't he walk? Because that doesn't always come
27:45
Speaker 3: along with you know, autism, So yes, those diagnosis do it.
27:50
Speaker 3: Once I got the genetic mutation diagnosis, I felt a
27:53
Speaker 3: whole like weight off my shoulders because I'm not worried
27:57
Speaker 3: as much I am, but I'm not because I'm not
28:00
Speaker 3: fighting about like what's going on. I can look it up.
28:02
Speaker 3: It's going to give me information. There's an answer. So yeah, no,
28:06
Speaker 3: it's good.
28:07
Speaker 2: I guess that's a lot better than thinking of something
28:11
Speaker 2: might be a miss and then you don't get a
28:15
Speaker 2: any kind of diagnosis or you think, well, actually is
28:18
Speaker 2: it just me? Am I just thinking? Yeah, thinking things
28:22
Speaker 2: are wrong but they're not or whatever it may be.
28:26
Speaker 3: Yeah. Initially his neurologist kept saying that he just had
28:30
Speaker 3: a developmental delay, that was it, and I was like, okay,
28:36
Speaker 3: you know that makes so much sense. Really not feeling
28:40
Speaker 3: confident or like that's not the answer I wanted.
28:43
Speaker 2: Yeah, yeah, it's definitely. There was one one point we
28:47
Speaker 2: haven't we haven't touched on yet. Sure that again possibly
28:53
Speaker 2: might have helped in terms of you identifying a lot
28:57
Speaker 2: of things that I bought you some concern. But it's
29:01
Speaker 2: that you are a licensed nurse, so so that's I
29:06
Speaker 2: guess that gives you. I don't know, he used the
29:08
Speaker 2: word an advantage. It's sort of being able to to
29:13
Speaker 2: see things that maybe other people don't see. That how
29:17
Speaker 2: long have you been been a licensed nurse?
29:21
Speaker 3: Oh, I've been a nurse now for five years, so
29:24
Speaker 3: a little bit before he was born. I'd also worked
29:28
Speaker 3: with people with developmental disabilities for a long time, almost
29:33
Speaker 3: my whole life actually, so thirteen years. I'm not my
29:36
Speaker 3: whole life, but my whole adult life around thirteen years.
29:41
Speaker 3: So it was really a benefit that I had been
29:43
Speaker 3: in healthcare, and when I had him, it just feels
29:46
Speaker 3: like it almost feels like the perfect the perfect match.
29:51
Speaker 3: So I could support him in ways that you know,
29:53
Speaker 3: maybe somebody else would be able to.
29:56
Speaker 2: I can imagine that's that's sort of a lot more
30:00
Speaker 2: helpful in a way where you can because you will
30:04
Speaker 2: you will obviously know because of your training, you will
30:07
Speaker 2: know things that other people don't know or maybe yeah,
30:13
Speaker 2: not necessarily could sort of diagnose things, but you could
30:18
Speaker 2: support things possibly a little bit easier.
30:21
Speaker 3: Yeah, I think with his dad, he his dad has
30:23
Speaker 3: like no background, and it took me a really long
30:27
Speaker 3: time to be understanding that he didn't have any background
30:30
Speaker 3: of like the healthcare side of things, because you know,
30:33
Speaker 3: I'd see something wrong and I'd want him to see
30:36
Speaker 3: and he wouldn't understand or whatever. So it has. It's
30:40
Speaker 3: humbled me. It's taught me a lot of things as well,
30:42
Speaker 3: just having a medically complex child, but it mostly has
30:48
Speaker 3: humbled me and given me a lot of patience for sure.
30:53
Speaker 2: Definitely, definitely, I can imagine that's been. Yeah, that's been
30:56
Speaker 2: been really handy to have. And another point as well,
31:01
Speaker 2: see I find a lot of my guests on this
31:04
Speaker 2: podcast via Instagram, as I did for you, and your
31:10
Speaker 2: page itself is so enlightening to see because you share
31:17
Speaker 2: so much of the good, the bad, sort of everything
31:22
Speaker 2: in between, and I think that's really really helpful for
31:26
Speaker 2: I can imagine that's very very helpful for a lot
31:28
Speaker 2: of people where they kind of because I think and
31:31
Speaker 2: I'm possibly guilty of it as well, in sharing things
31:34
Speaker 2: on Instagram where you only share the good things and
31:38
Speaker 2: only share the things that have gone well, excuse me
31:45
Speaker 2: that you you share sort of everything in between the
31:48
Speaker 2: uscopy bag leagues and everything as well, which is yeah,
31:52
Speaker 2: which I can imagine is a nightmare.
31:55
Speaker 3: Oh my gosh. You know, it's been really challenging initially
32:01
Speaker 3: that it wasn't even my goal. It wasn't even my
32:04
Speaker 3: goal to do that. I wanted to do like family
32:07
Speaker 3: content and then I realized, I'm like, you know what,
32:10
Speaker 3: like people don't know anything about this, Like I had
32:14
Speaker 3: no clue when it was, you know, brought to me,
32:17
Speaker 3: have no idea what it was. But yeah, I get
32:20
Speaker 3: a lot of messages from you know, a lot of
32:23
Speaker 3: parents and they're like, oh my gosh, I don't know
32:25
Speaker 3: what to do. The bag's not staying on, or I
32:29
Speaker 3: get really good messages. We're like, I'm just in the
32:32
Speaker 3: hospital with my kid right now, and I'm scrolling and
32:34
Speaker 3: I'm seeing these you know, sorry, mixing me the emotional
32:38
Speaker 3: I'm seeing the videos. So it's nice to be able
32:42
Speaker 3: to be like a support person from AFAR or have
32:45
Speaker 3: because I didn't have that. I just learned on my own.
32:47
Speaker 3: I didn't really feel like I needed it all the way.
32:49
Speaker 3: But like I also didn't I don't have anyone I
32:52
Speaker 3: can call that has a kid with anoscoity, you know
32:54
Speaker 3: what I mean, Like there there's no one, but there is.
32:59
Speaker 3: There's just no one in my immediate area, you know.
33:02
Speaker 3: So it's nice to really build a support system and
33:06
Speaker 3: connections through the internet. It's just amazing.
33:09
Speaker 2: Actually, yeah, yeah, no, I can imagine. Because it's also
33:14
Speaker 2: with having an osto me it's not necessarily just for
33:18
Speaker 2: people with Hirshbruns. I mean, you can have an ostomy
33:22
Speaker 2: for chrohnes or just all sorts of conditions. You can
33:29
Speaker 2: have various types of stonmas iariostomies, ostmeis, et cetera. So
33:35
Speaker 2: I can imagine the people that follow you are not
33:38
Speaker 2: just looking for Hirshbruns content, but possibly looking for sort
33:43
Speaker 2: of stoma content as well.
33:45
Speaker 3: M h, it's so crazy. The other day I was
33:49
Speaker 3: selling I have an old car that it just wasn't running,
33:52
Speaker 3: so I was going to sell it for really cheap,
33:54
Speaker 3: and I had somebody come out to my house to
33:56
Speaker 3: look at it, and he goes, you know, I kind
33:58
Speaker 3: of look at people's pay before I come to their houses.
34:01
Speaker 3: And I'm like, yeah, yeah, and he's like, you know what,
34:03
Speaker 3: I have a ostomy too, and I've had it for
34:06
Speaker 3: a couple of years now, and you know, it's really
34:08
Speaker 3: been challenging. But I think sometimes it like helps people
34:12
Speaker 3: open up because a lot of adults, I feel like,
34:14
Speaker 3: deal with a lot of like self esteem, you know,
34:17
Speaker 3: whenever they're in the middle of their life getting this
34:21
Speaker 3: ostomey placement. So we sat there and talked about ostomes
34:24
Speaker 3: and he's like, I don't get to have this conversation
34:26
Speaker 3: with people, and he had he had cancer and so
34:31
Speaker 3: that's why he had it, and it felt really good.
34:34
Speaker 3: Like it just feels really good to be able to
34:36
Speaker 3: talk to people and like allow them to open up
34:38
Speaker 3: and be understanding, because people aren't always understanding at all.
34:44
Speaker 2: That is That is the thing, isn't it? Especially you
34:48
Speaker 2: know when you talk about well, whether it's ostomes or
34:50
Speaker 2: whether it's hirshprungs, some people just simply don't know. You know,
34:54
Speaker 2: that's not necessarily their fault, but they just you can't
34:56
Speaker 2: have those conversations with people because they don't know what
34:59
Speaker 2: he's talking about, no clue. Yeah, so it must be Yeah,
35:05
Speaker 2: that must have been really good just to be able
35:07
Speaker 2: to like have a conversation. Again, it's it's a subject
35:11
Speaker 2: that it isn't necessarily going to come up no easily,
35:19
Speaker 2: So that's what like.
35:21
Speaker 3: Yeah, he's like, I don't just go up to people
35:24
Speaker 3: telling him I have usked me. And I'm like, yeah,
35:27
Speaker 3: I get that, but I always encourage people talk about it,
35:33
Speaker 3: share because otherwise people want know, you know, otherwise people
35:37
Speaker 3: want know exactly.
35:38
Speaker 2: No, I think I think content's brilliant because it just
35:41
Speaker 2: it shares. Because again, just because some people, you know,
35:46
Speaker 2: whether they just share the good stuff or just share
35:49
Speaker 2: a little bit or whatever, it doesn't mean that the
35:53
Speaker 2: bad stuff doesn't happen, or it doesn't mean the league
35:55
Speaker 2: leagues don't happen. Yeah, so it must be really good
36:01
Speaker 2: for people to see, Oh, actually I'm not alone in this,
36:04
Speaker 2: you know, because sometimes but there myself, you know, sometimes
36:08
Speaker 2: you can feel a bit alone and you think, well,
36:10
Speaker 2: nobody really knows what I'm talking about. Nobody understands this condition.
36:14
Speaker 2: Nobody knows really what it's called or what part of
36:17
Speaker 2: the body it is. And it must feel quite good
36:22
Speaker 2: for people to see your content and go, well, actually
36:27
Speaker 2: this person has this condition and they have these sort
36:30
Speaker 2: of similar issues to me as well.
36:34
Speaker 3: Yeah, I think it makes me. It helps me learn.
36:38
Speaker 3: I can't say that I understand all the way because
36:40
Speaker 3: I don't, but I do understand the parenting side of
36:43
Speaker 3: things for sure. I understand the parenting. I like to
36:48
Speaker 3: have connection. I think it's really good to be able
36:50
Speaker 3: to just connect. I think that's the biggest thing for me,
36:54
Speaker 3: is connecting. Making I don't know those connections and people
37:00
Speaker 3: from all all over it's crazy the opportunity that has
37:04
Speaker 3: opened up. And I hope my son changes, like changes
37:09
Speaker 3: like that's really the goal, and that he feels comfortable
37:12
Speaker 3: because I don't know when his Austin will ever, you know,
37:15
Speaker 3: be reverse, or if it ever does the other kids,
37:19
Speaker 3: I think, I don't know. There's a Facebook group I
37:22
Speaker 3: don't remember what it's called, but it's the first one
37:24
Speaker 3: I followed on my son had Hirsprungs and I'm stuck
37:26
Speaker 3: in it forever. Or when he was diagnosed and there
37:28
Speaker 3: was a little boy on there and she's like, my
37:30
Speaker 3: son has Hrsprungs and he can't really make friends because
37:33
Speaker 3: he has delay, you know what I mean? Like that's
37:36
Speaker 3: why we have the Internet, because there's not somebody next
37:41
Speaker 3: door with Hersprung's disease. It really just isn't you know.
37:45
Speaker 2: No, those Facebook groups are really helpful. I mean sometimes
37:52
Speaker 2: it can feel like a lot because there are hundreds
37:55
Speaker 2: of posts on there, especially some of them that there's
37:59
Speaker 2: one there's like two main ones. I think I follows
38:03
Speaker 2: that there's a UK one specifically, and then there's more
38:06
Speaker 2: of like a worldwide one that has tens of thousands
38:09
Speaker 2: of people, which might be the one you're in as well.
38:14
Speaker 2: It's so many posts just on there constantly, so it
38:18
Speaker 2: can maybe feel a little bit a little bit sort
38:22
Speaker 2: of overwhelmed. Big subtype.
38:26
Speaker 3: It was when I first got on there and I
38:28
Speaker 3: had like my son had the heirsprungs or he was
38:31
Speaker 3: diagnosed with hershrungs. I feel like a lot of people
38:35
Speaker 3: post because they're nervous about something, and so it was
38:38
Speaker 3: really got my anxiety going thinking that this was how
38:41
Speaker 3: it was going to be for my son. But it
38:43
Speaker 3: also goes to show how people do have different hirshrungs
38:46
Speaker 3: and present differently, and I had to learn how to
38:50
Speaker 3: read into those too much because it did make me
38:52
Speaker 3: have really bad anxiety in the beginning. For sure.
38:57
Speaker 2: Absolutely, And if we look at sort of now and
39:02
Speaker 2: towards the future, we're told obviously the six surgeries and
39:08
Speaker 2: whatnot in the ostomy and et cetera. Uh, what what
39:12
Speaker 2: do you hope I guess for for the future.
39:17
Speaker 3: Sure, I ultimately like at the end of this all,
39:22
Speaker 3: I would really want my son to like have a
39:25
Speaker 3: typical life without his osteme bag. I'm not ready, but
39:32
Speaker 3: I do like end all be all. I would like
39:35
Speaker 3: for him to be have a typical life, you know,
39:39
Speaker 3: doesn't mean that having the osteme is bad at all.
39:41
Speaker 3: I just think ultimately, you know when it when a
39:45
Speaker 3: boy is all down to not have it and and
39:49
Speaker 3: go to school without the worry of that, which makes
39:52
Speaker 3: me worried. So yeah, end all be all, no osteme,
40:00
Speaker 3: live in a typical wife.
40:03
Speaker 2: Yeah, fantastic. Well, this has been really really good to
40:07
Speaker 2: chat to you. Thank you so so much for coming on,
40:11
Speaker 2: for sharing your son's story, and I wish you all
40:14
Speaker 2: the very very best of the future.
40:17
Speaker 3: Oh, thank you. It was nice connecting with you.
40:24
Speaker 1: Thank you for listening and being part of this growing community.
40:28
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
40:31
Speaker 1: leave a review, and share it with someone who might
40:33
Speaker 1: need it. You can connect with us on social media
40:36
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
40:42
Speaker 3: See you next week, Lady BA.