Latest / Tom's Hirschsprung's Podcast / Episode 119 - With Bria

Transcript

Episode 119 - With Bria · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
• 0:12
  Speaker 1: just want to understand more, this podcast is for you.
• 0:15
  Speaker 1: Each episode we will explore real stories and honest conversations
• 0:19
  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in. Hello, and welcome to episode one hundred and
• 0:46
  Speaker 1: nineteen of Tom's Hirshbrungs Podcast. I am delighted to be
• 0:50
  Speaker 1: joined this evening by Bria. Welcome Brier, Hi, how are you.
• 0:55
  Speaker 1: I'm very well and yourself.
• 0:58
  Speaker 2: I am wonderful today. It was rainy all they but
• 1:01
  Speaker 2: still wonderful.
• 1:03
  Speaker 1: I think it's actually the first time here. It hasn't
• 1:05
  Speaker 1: rained in about two months, so yeah, it's all good here.
• 1:11
  Speaker 1: But now, thank you so much for joining me, and
• 1:14
  Speaker 1: we are here to talk about your son's Hirshbrung's journey.
• 1:19
  Speaker 1: So over to you. You can start wherever.
• 1:22
  Speaker 2: You please, Okay.
• 1:25
  Speaker 3: So, of course throughout the pregnancy we did not have
• 1:29
  Speaker 3: any concerns because it's not something that you can see
• 1:32
  Speaker 3: on the ultrasound. And this is will be my second child.
• 1:37
  Speaker 3: So I'm going into the hospital thinking, you know, Okay,
• 1:41
  Speaker 3: it's gonna be just like the first one, easy pacy.
• 1:43
  Speaker 3: We're gonna have the c section, be there for about
• 1:47
  Speaker 3: five days, and then we're gonna come home, you know,
• 1:51
  Speaker 3: and everything's gonna be just like it was the last time.
• 1:54
  Speaker 2: No, So we had the baby.
• 1:59
  Speaker 3: We were after I had the C section.
• 2:02
  Speaker 2: We were in the room. They kept saying like, did
• 2:05
  Speaker 2: he poop, patty poop? Ye not but like no.
• 2:07
  Speaker 3: But I wasn't thinking nothing of it because of course
• 2:09
  Speaker 3: I didn't never hear of her pre disease ever, so that.
• 2:13
  Speaker 2: Wasn't on my mind.
• 2:14
  Speaker 3: I'm just like, Okay, well, you know, he has a
• 2:16
  Speaker 3: poopy it, you know, it's not a cause for concern until.
• 2:21
  Speaker 2: I think it was like the third day or the
• 2:25
  Speaker 2: second day.
• 2:26
  Speaker 3: The second day, the pediatrician came in and which is
• 2:29
  Speaker 3: also my other son's pediatricians. Well, she came in and
• 2:32
  Speaker 3: she was like, he still hadn't poop, And I always
• 2:35
  Speaker 3: tell her. She was like yeah, So she like took
• 2:39
  Speaker 3: her finger and she like put it in his in
• 2:43
  Speaker 3: his part, and she like basically made the poop come out,
• 2:47
  Speaker 3: which was the maconium with the black poop and she
• 2:51
  Speaker 3: was like, I'm gonna sing you to I think it
• 2:55
  Speaker 3: was a surgeon. His name was doctor Pateel. I'll never
• 2:58
  Speaker 3: forget doctor Portel. And I was like okay. I still
• 3:01
  Speaker 3: wasn't concerned. I'm just like, okay, they're just gonna just
• 3:03
  Speaker 3: see you something is wrong. But I think my uncle
• 3:06
  Speaker 3: was on his way to come and see us at
• 3:08
  Speaker 3: the hospital, and right before he got there, the nurse
• 3:14
  Speaker 3: was like, they're gonna take your baby to the nick
• 3:15
  Speaker 3: you and I'm like the nick you.
• 3:17
  Speaker 2: They was like, yeah, the surgeon is going to come
• 3:20
  Speaker 2: and talk to you more about it or whatever. Bh
• 3:22
  Speaker 2: blah blah, and I could just remember I immediately start
• 3:26
  Speaker 2: bawling my ales. I was I'm like the surgeon, nick you.
• 3:30
  Speaker 3: That means we're not gonna be here a while, Like
• 3:33
  Speaker 3: this sounds pretty serious. And then my gynecology she is
• 3:38
  Speaker 3: very like family oriented, like when you think of the doctor,
• 3:42
  Speaker 3: you want like if she's the doctor. So she came
• 3:46
  Speaker 3: in and she's seen me crying and she's like, what's
• 3:48
  Speaker 3: her and then she was.
• 3:50
  Speaker 2: Like, oh my gosh. She's like that sounds like her
• 3:52
  Speaker 2: sprungs or whatever. She's like, I remember a case like
• 3:54
  Speaker 2: a long long time ago where someone had it and
• 3:59
  Speaker 2: it wasn't as many treatments as it is today, so
• 4:02
  Speaker 2: it wasn't really much TA can do for that baby
• 4:04
  Speaker 2: way back then.
• 4:05
  Speaker 3: She was like, but technology has changed, medicine has changed.
• 4:08
  Speaker 3: She was like, so, if that's what it is, just
• 4:10
  Speaker 3: hope it's not. Maybe you know, the baby will be okay.
• 4:14
  Speaker 2: Whatever. So then.
• 4:17
  Speaker 3: The surgeon came in and he was telling me. He
• 4:19
  Speaker 3: was like, I'm hoping that's not what it is. He
• 4:22
  Speaker 3: was like, but it's possibly that's what it is. I
• 4:24
  Speaker 3: was just remember I was not listening. I was distraught,
• 4:27
  Speaker 3: like I was crying out. I know he probably saw
• 4:30
  Speaker 3: I was crazy because I was just crying. I just
• 4:33
  Speaker 3: just couldn't stop crying. They were like, you can go
• 4:35
  Speaker 3: see your baby in a nick you and I remember
• 4:38
  Speaker 3: going in. I had ne this is my first time
• 4:39
  Speaker 3: ever even being in a nikki for anybody. So when
• 4:43
  Speaker 3: I went in there and I seen this little baby,
• 4:46
  Speaker 3: my little baby hooked up to all these machines. He
• 4:50
  Speaker 3: has tubes coming out of his nose they have he
• 4:53
  Speaker 3: only has a diaper on. He's in like this little
• 4:57
  Speaker 3: bed and I'm just like, oh my gosh, I'm in
• 4:59
  Speaker 3: the nikki sitting, asked, is badside crying? Just I could
• 5:03
  Speaker 3: not stop crying. But luckily the nick you was twenty
• 5:09
  Speaker 3: four hours, so you can go in there whenever you
• 5:11
  Speaker 3: wanted to, and my whole hospital stay until they like
• 5:16
  Speaker 3: discharged me. I was in there and I will be
• 5:21
  Speaker 3: in there all day if you look for me. I
• 5:23
  Speaker 3: was in naniku outside of the bed, I say for anything.
• 5:26
  Speaker 3: Anytime when they were coming there and have to work
• 5:28
  Speaker 3: on him, they'll be like, do you want to step away?
• 5:31
  Speaker 2: No, I can't because I feel like he doesn't know
• 5:36
  Speaker 2: he needs me, but he needs me right now.
• 5:39
  Speaker 3: And I need to see this because I need to
• 5:41
  Speaker 3: be able to know what's going on, what I need
• 5:43
  Speaker 3: to do for later, or I just need to be involved.
• 5:46
  Speaker 3: I'm I'm a very hands on person, so I needed
• 5:49
  Speaker 3: to be in the room at all times. I don't
• 5:50
  Speaker 3: care what they was doing, whether you were trying to
• 5:52
  Speaker 3: stick him POKEI I needed to be there.
• 5:54
  Speaker 2: I had to see that for myself. So he was
• 5:58
  Speaker 2: a nick you.
• 5:59
  Speaker 3: They gave him ripogol to to like pull all the
• 6:02
  Speaker 3: stuff from his stomach. They did ir well, Like I
• 6:05
  Speaker 3: know a lot of people call them wash outs, but
• 6:07
  Speaker 3: I hear we call them irrigations. Well, I never heard
• 6:11
  Speaker 3: a hair of wash out until, like I started looking
• 6:13
  Speaker 3: more on TikTok and stuff.
• 6:15
  Speaker 2: But they did irrigation. He was cooping on his own.
• 6:18
  Speaker 3: Then then he had to have They ended up giving
• 6:24
  Speaker 3: him a pick line because his ivy. He kept pulling
• 6:27
  Speaker 3: his ivy out, so they had to do I couldn't
• 6:30
  Speaker 3: be in there for that. That's the only thing they
• 6:32
  Speaker 3: didn't let me be in there for. But they gave
• 6:35
  Speaker 3: him a pickline, which was very tough because you know,
• 6:39
  Speaker 3: the pick line has to go like through your heart.
• 6:41
  Speaker 3: So they gave him a pickline because they gave him
• 6:44
  Speaker 3: an ivy in his foot, The iv was in his hand,
• 6:47
  Speaker 3: the iv was in his arm, the iv was in
• 6:49
  Speaker 3: his head. And I think that one in the head
• 6:51
  Speaker 3: was the scariest one because I don't know if it
• 6:54
  Speaker 3: was position.
• 6:55
  Speaker 2: Right or what. But I had came in.
• 6:57
  Speaker 3: From the bathroom or just eating, because the nurse would
• 7:01
  Speaker 3: see me sitting in there all day, so she'll be like,
• 7:03
  Speaker 3: go go get some food, go use the restroom, go
• 7:05
  Speaker 3: take care of yourself. And I came back and that
• 7:10
  Speaker 3: ivy from his head, his whole face through that side
• 7:14
  Speaker 3: swollen eyes, swollen shut, and I had to get the
• 7:17
  Speaker 3: discharge nurse because I'm like, this doesn't look okay. That's
• 7:20
  Speaker 3: why you're gonna be me the real because I'm gonna
• 7:22
  Speaker 3: say something, I cannot not say anything. So they ended
• 7:25
  Speaker 3: up whoever that nurse was, they ended up like telling
• 7:27
  Speaker 3: her that it wasn't okay, and a discharged nurse that
• 7:29
  Speaker 3: came and speaks it.
• 7:30
  Speaker 2: That's why he got the pik wine because that was crazy.
• 7:35
  Speaker 3: But after that they did his I watched him do
• 7:38
  Speaker 3: his the biopsy to see if like the the what's
• 7:43
  Speaker 3: it called the blue light I can't think right now,
• 7:45
  Speaker 3: where they put the enema, uh, the blue enema in
• 7:48
  Speaker 3: him to see and then they did the biopsy at
• 7:51
  Speaker 3: the table where he clipped a little bit off. The
• 7:54
  Speaker 3: doctor Saidji came in and he clipped a little bit off,
• 7:56
  Speaker 3: So I got to see that it didn't look like
• 7:59
  Speaker 3: it was paying for it. They did that and then
• 8:03
  Speaker 3: they sun it and then it was confirmed that he
• 8:06
  Speaker 3: did have hers brines and so he was like, we
• 8:09
  Speaker 3: could do two options.
• 8:10
  Speaker 2: He was like, I'm like, wait a minute. So basically
• 8:13
  Speaker 2: you're telling me we're gonna be.
• 8:15
  Speaker 3: Here for a while, and he was like yeah. I'm like,
• 8:17
  Speaker 3: so we're not gonna be here. We're gonna be here
• 8:19
  Speaker 3: for Christmas. He was like yeah, and I'm just like,
• 8:22
  Speaker 3: oh mag a crying again, like what do you mean?
• 8:26
  Speaker 2: This is too much for me?
• 8:28
  Speaker 3: So he he was like, you got two options, and
• 8:31
  Speaker 3: like I said, I'm hands on, I'm a visual learner,
• 8:33
  Speaker 3: so you can't just tell me. And I'm just like
• 8:36
  Speaker 3: I need to see it. So he gave me this paper.
• 8:39
  Speaker 3: I still have the paper in a folder with all
• 8:40
  Speaker 3: his stuff. I will never do it everyway. On the front,
• 8:43
  Speaker 3: he wrote down where you can have the oscme bag.
• 8:46
  Speaker 3: Or if I wanted him to get home, suitor, let's
• 8:48
  Speaker 3: do the option be back, or he said, or we
• 8:51
  Speaker 3: can go ahead and do the surgery, which is the
• 8:54
  Speaker 3: lap of scraper pulled through. And so I'm like, what
• 8:58
  Speaker 3: do you think is the best option And he's like,
• 9:01
  Speaker 3: I've done this surgery before. He was like, I don't
• 9:03
  Speaker 3: think it's a lot of his intestine that's effected. He
• 9:06
  Speaker 3: was like, I have very high hopes for the surgery.
• 9:08
  Speaker 3: He was like, I think we should go ahead with
• 9:09
  Speaker 3: the surgery. He's like, but it's totally up to you.
• 9:11
  Speaker 3: He's like, or you can go get a second opinion.
• 9:14
  Speaker 2: And I'm like, a second opinion, I can't even go
• 9:17
  Speaker 2: get a second opinion because.
• 9:19
  Speaker 3: I'm still I still don't know really what is going on.
• 9:23
  Speaker 3: So the second opinion is not gonna help me right now.
• 9:26
  Speaker 3: So I'm like, let's just do the surgery. Because if
• 9:29
  Speaker 3: you're saying do the OSome bad, I mean you gotta
• 9:31
  Speaker 3: do the os bag. That's the surgery, and then in
• 9:33
  Speaker 3: a couple of months you come back and do the surgery.
• 9:35
  Speaker 3: That's another surgery. Just let's just see if we can
• 9:38
  Speaker 3: get this done this first time and see how it does.
• 9:42
  Speaker 2: So he did the surgery. We're in the nikki for
• 9:47
  Speaker 2: twenty eight twenty nine days.
• 9:50
  Speaker 3: He got out right before the new year started, like
• 9:54
  Speaker 3: the day before the new year started. That's when he
• 9:56
  Speaker 3: got out. So yeah, and after the surgery, I just
• 10:03
  Speaker 3: remember he was in like the recovery portion of it,
• 10:06
  Speaker 3: because okay, so he was in the nicku he for
• 10:08
  Speaker 3: like five days. Then they did this stuff, and then
• 10:12
  Speaker 3: two weeks later he had the surgery and then they
• 10:14
  Speaker 3: led him this head. Recovery time is like a week,
• 10:17
  Speaker 3: but they let him recover for ten days. So before
• 10:20
  Speaker 3: that ten days he was getting more outfs of milk
• 10:26
  Speaker 3: because they at first they were giving him only eight
• 10:29
  Speaker 3: mls and that's nothing. That's feeding him absolutely nothing. They
• 10:34
  Speaker 3: said they were giving him nutrients and stuff through the
• 10:36
  Speaker 3: pink line. But it's like, you know, he's a baby.
• 10:39
  Speaker 3: He's still looking for some milk or something.
• 10:41
  Speaker 2: You know, he hungry, like I'm moving more. But once
• 10:43
  Speaker 2: he had the surgery, he was taking the feeds down.
• 10:47
  Speaker 3: Because at first, like before he even went to the
• 10:50
  Speaker 3: nick You sorry to backtrack. I have to make sure
• 10:53
  Speaker 3: I tell you everything. Before he went to the Nike.
• 10:56
  Speaker 3: You when he was also wasn't pooping. He would when
• 11:00
  Speaker 3: you would see him the breast milk or a bottle,
• 11:03
  Speaker 3: you can see when and you I don't even remember
• 11:07
  Speaker 3: him burping, but I know that I would try to
• 11:09
  Speaker 3: break him for a long time and then I would
• 11:11
  Speaker 3: try to like lay him down, and it's like when
• 11:14
  Speaker 3: he would be laying down, the milk was coming up.
• 11:17
  Speaker 3: So he was like like you have to hurb and
• 11:19
  Speaker 3: grab him because he was like choking on the milk
• 11:21
  Speaker 3: coming back up because he couldn't get anything down. But
• 11:24
  Speaker 3: after the surgery, he was able to keep everything down.
• 11:26
  Speaker 3: They stopped doing the irrigations because he was pooping on
• 11:31
  Speaker 3: his own. But it's one day after the surgery. He's
• 11:35
  Speaker 3: just screaming, crying, and you just screaming, screaming, screaming, and
• 11:40
  Speaker 3: he's like, what is going on? And they opened his
• 11:44
  Speaker 3: diaper and he was bleeding from his ainus. So one
• 11:47
  Speaker 3: of the stitches had popped. Yes, it was the worst
• 11:52
  Speaker 3: thing ever, so they had to fix that, which was
• 11:54
  Speaker 3: it wasn't really too bad to fix. They were dissolvable stitches.
• 12:00
  Speaker 2: But I don't remember how they fixed it though, I'm not.
• 12:03
  Speaker 3: Sure, but you fixed that. They gave him to medicine
• 12:06
  Speaker 3: because he was crying and screaming really bad. And then
• 12:10
  Speaker 3: after that we got to go home. He was doing
• 12:12
  Speaker 3: pretty well at home. He was scooping, normal baby kind
• 12:17
  Speaker 3: of acting, but you know, it was you knew that
• 12:20
  Speaker 3: he was different, which was okay. And then we had
• 12:24
  Speaker 3: to see the surgery like two weeks later, and he
• 12:28
  Speaker 3: taught me how to do the the probes, the propes
• 12:34
  Speaker 3: that keep the space open. So I had to learn
• 12:38
  Speaker 3: that and we did those for probably like two and
• 12:40
  Speaker 3: a half months, three months, just so we could keep
• 12:44
  Speaker 3: that surgery space open. And I did good with that,
• 12:49
  Speaker 3: like when I tell you, I'm gonna make sure to
• 12:52
  Speaker 3: learn everything.
• 12:53
  Speaker 2: I learned everything.
• 12:54
  Speaker 3: And every time we would go to the doctor to
• 12:55
  Speaker 3: check just that, he would be like, you're doing great,
• 12:58
  Speaker 3: because it's not like you need to go down and
• 13:00
  Speaker 3: start from another number.
• 13:01
  Speaker 2: Or he's like, I can I can.
• 13:02
  Speaker 3: See that you're actually doing this a good number amount
• 13:05
  Speaker 3: of a good amount of times a day because you're
• 13:09
  Speaker 3: going up, you're canfuling going up. So we got to
• 13:11
  Speaker 3: stop that, and we got to find a GI doctor.
• 13:18
  Speaker 3: I had to switch, so I have another good GI
• 13:20
  Speaker 3: doctor now for him.
• 13:22
  Speaker 2: But yeah, we came home and.
• 13:26
  Speaker 3: Now he is three, and he's three.
• 13:34
  Speaker 2: But I know you haven't questions.
• 13:38
  Speaker 1: Yeah, absolutely, I mean that that sounds it's a it's
• 13:43
  Speaker 1: it's a funny one Hushbrungs, isn't it, Because there's so
• 13:46
  Speaker 1: many people I talk to, like yourself, who is no
• 13:50
  Speaker 1: presumably no history of Hushbrungs in the family or anything
• 13:54
  Speaker 1: like that. And then suddenly you're thrust into this world
• 13:58
  Speaker 1: of wash out saw irrigations and you've got to learn
• 14:02
  Speaker 1: all of this terminology within hours, not days or weeks
• 14:07
  Speaker 1: that usually it would take people days and weeks to
• 14:10
  Speaker 1: learn that you have to learn it within within hours,
• 14:14
  Speaker 1: and I just I have so much respect for anybody
• 14:18
  Speaker 1: who has to learn everything so quickly at that point,
• 14:24
  Speaker 1: did you when as soon as the word hirshprungs has
• 14:26
  Speaker 1: come up? Sometimes people are told not to not to
• 14:31
  Speaker 1: google the word hirshprungs because they don't want to scare them.
• 14:34
  Speaker 1: Did you google straight away or did you sort.
• 14:36
  Speaker 2: Of leave it right away?
• 14:38
  Speaker 3: I couldn't. I couldn't. I needed to know. I needed
• 14:41
  Speaker 3: to know what I was about to give myself into.
• 14:43
  Speaker 3: I needed to know what was going on. And they
• 14:46
  Speaker 3: always say, don't google, don't look it up. But I'm
• 14:48
  Speaker 3: not that person.
• 14:49
  Speaker 2: I rather.
• 14:51
  Speaker 3: Know and be scared and be scared of that or known.
• 14:55
  Speaker 3: I have to know, like let me know. And I
• 14:59
  Speaker 3: feel like the more you go and research yourself, when
• 15:02
  Speaker 3: you do when the doctor does come in, you got
• 15:05
  Speaker 3: questions to throw back. Now I'm asking you questions. Now,
• 15:08
  Speaker 3: I'm telling you stuff. Now I'm saying stuff that you
• 15:11
  Speaker 3: probably didn't even think.
• 15:12
  Speaker 2: I know. But I'm going to research you every time.
• 15:14
  Speaker 2: I don't care what it is.
• 15:15
  Speaker 1: Yeah, I think I think people are always one side
• 15:20
  Speaker 1: or the other, either they want everything or nothing. I
• 15:24
  Speaker 1: haven't I don't think I've met any people who are
• 15:27
  Speaker 1: in the middle with that. Usually it's the side of
• 15:32
  Speaker 1: wanting to know absolutely everything. Touch on something you said earlier.
• 15:37
  Speaker 1: You mentioned something about probes. I don't think I've I've
• 15:42
  Speaker 1: come across that before. Could you explain that a little
• 15:45
  Speaker 1: bit more?
• 15:46
  Speaker 2: Oh, well, is this record like, can I can I?
• 15:49
  Speaker 2: Can I grab one?
• 15:50
  Speaker 1: Man?
• 15:50
  Speaker 2: Feel you? Sure? Yeah? Okay, let me grab it? This
• 15:53
  Speaker 2: show you I'm sorry hold yeah. Oh the bag looks
• 16:00
  Speaker 2: they're clean by way, So the progs look like mud on.
• 16:08
  Speaker 3: The progs look like this, but they literally look like
• 16:17
  Speaker 3: not to eat, you know, But you literally put the
• 16:20
  Speaker 3: they go up in numbers. This is like the smallest
• 16:22
  Speaker 3: the three cut, and the biggest is thirteen. So basically
• 16:28
  Speaker 3: you're like putting it in because you know the surgery
• 16:31
  Speaker 3: is done through the anus part. They pulled the yelp,
• 16:34
  Speaker 3: so you're putting it in there so that surgery phrase
• 16:38
  Speaker 3: doesn't close or get too tight and then nothing can
• 16:42
  Speaker 3: come out of it because it's you have to do
• 16:44
  Speaker 3: this to keep it open.
• 16:46
  Speaker 2: So it's like stretch and state is there. So it
• 16:50
  Speaker 2: was just going up in numbers.
• 16:51
  Speaker 3: I think we started at a we originally started at
• 16:55
  Speaker 3: after the surgery. We started at at eight, so this
• 16:58
  Speaker 3: is an eight Okay, So yeah, you have to do that,
• 17:02
  Speaker 3: and you just have to go up. You do like
• 17:05
  Speaker 3: four times a day, four times a day, and then
• 17:10
  Speaker 3: after a certain amount of days you go up a number.
• 17:13
  Speaker 3: So you had to finish out at thirteen.
• 17:15
  Speaker 1: Yeah, I'm lucky thirteen. Uh yeah, I don't think. I'm
• 17:25
  Speaker 1: sure it's something that other people must must have obviously
• 17:29
  Speaker 1: done before, who have had on But I don't I've
• 17:31
  Speaker 1: ever I don't think i've ever anybody's ever spoken about
• 17:34
  Speaker 1: that before.
• 17:35
  Speaker 2: Yeah, they call them dilations. Yeah, oh yeah, okay, well, yeah,
• 17:42
  Speaker 2: they call dilations. But yeah, I call it a probe
• 17:44
  Speaker 2: because it's it's a it's a probe.
• 17:47
  Speaker 1: But yeah, I'm thinking with the prob it's gonna be
• 17:51
  Speaker 1: some sort of high tech electrical thing that was gonna do.
• 17:55
  Speaker 2: Oh no, I like, how long did.
• 18:01
  Speaker 1: You have to do the dilations for?
• 18:03
  Speaker 3: I think it was like two and a half almost
• 18:05
  Speaker 3: three months every day.
• 18:08
  Speaker 2: Yeah.
• 18:09
  Speaker 1: Interesting, Yeah, I mean, because that's that's the other issue
• 18:14
  Speaker 1: I guess with hirshprungs is it's quite it's quite an
• 18:17
  Speaker 1: invasive condition, so it's quite sort of both the surgery
• 18:23
  Speaker 1: and various procedures. They are white. They are quite invasive,
• 18:28
  Speaker 1: So I guess that's that's a sort of a yeah,
• 18:35
  Speaker 1: an issue that I find with with hirshprungs. There are
• 18:38
  Speaker 1: a lot of procedures that there's only one one way
• 18:42
  Speaker 1: of doing them, really, so I guess that And how
• 18:46
  Speaker 1: and how did you kind of take the dilations. Were
• 18:49
  Speaker 1: they sort of easy to do as you went through
• 18:53
  Speaker 1: or was it sort of difficult to start or how
• 18:55
  Speaker 1: was it?
• 18:55
  Speaker 2: It was?
• 18:56
  Speaker 3: It was easy to it was easy to do as
• 18:59
  Speaker 3: it went through. But you know, like as a baby,
• 19:02
  Speaker 3: he's like, you don't really want a body messing with
• 19:04
  Speaker 3: your butt. It didn't hurt him because, like I said,
• 19:06
  Speaker 3: they gave him the ten days to recover and a
• 19:09
  Speaker 3: nick you, and then they waited two whole weeks after
• 19:12
  Speaker 3: that once he got home, So it wasn't causing him
• 19:15
  Speaker 3: any pain or anything. But he just said, now, if
• 19:19
  Speaker 3: you're doing the dilations, if poof flies out, then me
• 19:22
  Speaker 3: He did it right, So.
• 19:26
  Speaker 2: We were making sure that poof flew out.
• 19:28
  Speaker 1: Fantastic, that's brilliant. One thing you mentioned as well with
• 19:34
  Speaker 1: his surgery was that the doctor or surgeon was was
• 19:42
  Speaker 1: fairly sure that not too much of the intestine was affected.
• 19:47
  Speaker 1: Does that mean that he had sort of short segment
• 19:51
  Speaker 1: or very short you know?
• 19:53
  Speaker 2: Yeah? Sure.
• 19:54
  Speaker 3: So when they did the biopsy the first time, he
• 19:57
  Speaker 3: said he saw it and he said it was close
• 19:59
  Speaker 3: even on he said it was close to like the aliens.
• 20:02
  Speaker 3: It was like that part it was at the end.
• 20:05
  Speaker 3: So it's short segment excellent.
• 20:08
  Speaker 1: I think that's the most certainly the most common one.
• 20:10
  Speaker 1: I think it's about eighty percent the research I've done
• 20:13
  Speaker 1: about eighty percent of people have short segment, like myself
• 20:16
  Speaker 1: have short segment excellent. So one thing I wanted to
• 20:21
  Speaker 1: move on to, which is I think where I first
• 20:24
  Speaker 1: came across you and your son's story was on TikTok.
• 20:29
  Speaker 1: And there's a few videos that you've done on TikTok
• 20:34
  Speaker 1: which are fantastic. There's I think it's five four or
• 20:39
  Speaker 1: five in particular, where you go through explaining the types
• 20:45
  Speaker 1: of hirshprungs, the potential treatments of hirshbrungs, And if anybody
• 20:49
  Speaker 1: hasn't checked that out, please do because it's it's really
• 20:52
  Speaker 1: really good. What made you kind of think, right, I
• 20:56
  Speaker 1: want to I want to do this. I want to
• 20:59
  Speaker 1: sort of maybe educate people on hirsprungs.
• 21:04
  Speaker 3: So before the hirsprungs, before the baby, I didn't get
• 21:10
  Speaker 3: to do with my first, but the second I was
• 21:13
  Speaker 3: documented my pregnancy on their So when you're documenting your
• 21:19
  Speaker 3: pregnancy and then all of a sudden you just stop posting,
• 21:22
  Speaker 3: you literally have people in your comments or in your
• 21:25
  Speaker 3: messages like, hey, where's the baby?
• 21:28
  Speaker 2: You had the baby? And at first I didn't want
• 21:30
  Speaker 2: to share it because I'm like, I was literally I'm
• 21:34
  Speaker 2: not even gonna lie. I was sad that whole time.
• 21:36
  Speaker 2: He's a nikki. I was not in a good hit space.
• 21:39
  Speaker 2: I was not okay.
• 21:41
  Speaker 3: But you literally have people looking for you, people that
• 21:44
  Speaker 3: you don't even know are checking in or you like,
• 21:46
  Speaker 3: have you had the baby?
• 21:47
  Speaker 2: Where's the baby? What did you have? Because this is
• 21:49
  Speaker 2: this is the pregnancy.
• 21:51
  Speaker 3: I did where I didn't find out what I was
• 21:53
  Speaker 3: having until I gave births, So people want to know
• 21:56
  Speaker 3: what did you have? You know, and I'm just like, okay,
• 21:58
  Speaker 3: I have to share this, have to let them know.
• 22:00
  Speaker 3: But I think once I share that, you know, like
• 22:04
  Speaker 3: he's in a nick you that's why you haven't seen
• 22:06
  Speaker 3: me blah blah blah. I'm like, Okay.
• 22:10
  Speaker 2: My husband, he was like, you stopped doing videos.
• 22:12
  Speaker 3: He was like, what if it's somebody out there that's
• 22:15
  Speaker 3: going through what you're going through, but they don't know
• 22:18
  Speaker 3: how to handle it either. And you've been doing all
• 22:22
  Speaker 3: his research, You've been looking stuff up. He was like,
• 22:25
  Speaker 3: you could be posting videos about it, and you know,
• 22:28
  Speaker 3: maybe you're helping somebody else. Maybe your story or your
• 22:31
  Speaker 3: son's story is helping somebody else and you don't even
• 22:34
  Speaker 3: know it.
• 22:34
  Speaker 2: And he was right.
• 22:37
  Speaker 3: But so I posted those videos and even to this
• 22:42
  Speaker 3: day I and I haven't posted video on a while.
• 22:45
  Speaker 3: Shame on me, I know, but I even to this day,
• 22:48
  Speaker 3: I still get messages of people who found my videos
• 22:52
  Speaker 3: and or find them and they're messaging me like, hey,
• 22:57
  Speaker 3: like I can I message you like what this is happening.
• 23:00
  Speaker 2: This is what the doctors are saying.
• 23:02
  Speaker 3: This is not I'm not a professional, like I said,
• 23:04
  Speaker 3: but I mean I can, I can like share my
• 23:07
  Speaker 3: story or tell you like what you could expect, or
• 23:09
  Speaker 3: tell you or just give you like words of encouragement
• 23:12
  Speaker 3: to you know, like you're not alone. This is not
• 23:15
  Speaker 3: an easy journey. But I mean you're gonna get through it.
• 23:17
  Speaker 3: It's gonna see confusing. I'm telling them acts as many
• 23:20
  Speaker 3: questions as you can. No question is a dumb question.
• 23:23
  Speaker 3: If you don't understand, get them to write it out,
• 23:26
  Speaker 3: draw it out, make them sit there until you understand
• 23:29
  Speaker 3: what's going on. If your baby, this is your life,
• 23:32
  Speaker 3: don't just accept what.
• 23:33
  Speaker 2: Anybody's telling you. And I like the fact that I've
• 23:37
  Speaker 2: talked to so many people. I oh, I'm so sorry.
• 23:40
  Speaker 3: I exchanged numbers with so many people, and like I
• 23:44
  Speaker 3: didn't met a lot of different people.
• 23:46
  Speaker 2: I literally just talked to a girl last week.
• 23:48
  Speaker 3: She just had her baby, and she had reached out
• 23:51
  Speaker 3: to me because they had concerns of her sprunks, and
• 23:54
  Speaker 3: he did have her sprunks. So you just meet so
• 23:57
  Speaker 3: many different people the little like everyone I haven't. I've
• 24:04
  Speaker 3: the only man, one person in Houston so far, but
• 24:06
  Speaker 3: everybody else has.
• 24:07
  Speaker 2: Been like New York, Ginver where else. It was far.
• 24:17
  Speaker 3: I think she was like where is she at? I
• 24:20
  Speaker 3: think she was in Barbados? Oh wow, Yes, Yes, I've
• 24:24
  Speaker 3: talked to a lot of different people, and I love
• 24:26
  Speaker 3: it so.
• 24:27
  Speaker 1: But that's brilliant though, that that's well kind of you know,
• 24:32
  Speaker 1: similar to what this is. It's it's creating a community
• 24:35
  Speaker 1: and then showing people that they're not alone, you know,
• 24:40
  Speaker 1: like he says, And I think, I don't know whether
• 24:44
  Speaker 1: it's just me being in a hirsh Brungs bubble, but
• 24:48
  Speaker 1: I see, you know, so many people who have this condition.
• 24:53
  Speaker 1: And we always hit told you know, it's one in
• 24:55
  Speaker 1: five thousand or there thereabouts, and it's so rare and
• 24:58
  Speaker 1: all of this stuff, But actually I think there's way
• 25:01
  Speaker 1: more than you think. Oh yeah, yeah, I really think so.
• 25:08
  Speaker 1: I again, I mean, one in five thousand would still
• 25:12
  Speaker 1: be you know, several hundred thousand people, if not into
• 25:17
  Speaker 1: the millions you know of people across the world who
• 25:20
  Speaker 1: have this condition, and a lot of them obviously have
• 25:24
  Speaker 1: some form of social media, whether it's Instagram, whether it's TikTok, Facebook, whatever,
• 25:29
  Speaker 1: And I think sort of just sharing a bit of info.
• 25:32
  Speaker 1: It's like you said, you know, we're not doctors. We're
• 25:35
  Speaker 1: not going to you know, we're not going to tell
• 25:37
  Speaker 1: you what to do. Just a little bit of info
• 25:40
  Speaker 1: here and there, especially if you're blindsided by the condition,
• 25:47
  Speaker 1: it can can really really help. And that's you know,
• 25:50
  Speaker 1: I think, and that's where you know, TikTok I think
• 25:55
  Speaker 1: is really good for that kind of thing because you
• 25:57
  Speaker 1: can do short little videos, whereas I mean, you can
• 25:59
  Speaker 1: do them on Instagram, we can do them on Facebook,
• 26:01
  Speaker 1: but TikTok's much better for just short little clips videos.
• 26:06
  Speaker 1: You know, this is what it is, This is what
• 26:09
  Speaker 1: you know, this is what might you know happen in
• 26:12
  Speaker 1: terms of surgeries and pull throughs and all of that stuff.
• 26:16
  Speaker 1: I think those brilliant and I think as well, it's
• 26:21
  Speaker 1: it's those I guess probably more for parents. Would you
• 26:29
  Speaker 1: say those tiktoks.
• 26:34
  Speaker 3: It's for parents, But I think I've met two people
• 26:39
  Speaker 3: besides you, two other people that have it theirselves that
• 26:43
  Speaker 3: are adults, so that it is for parents, but it's
• 26:48
  Speaker 3: for you know, those that have it and deal with it,
• 26:52
  Speaker 3: so they're being seen as well. Yeah, because it doesn't
• 26:56
  Speaker 3: stop as a baby like you still and even if
• 26:59
  Speaker 3: you had the surgery like my son you, they call
• 27:02
  Speaker 3: it now fixed her sprugs. He consider it fixed her strungs,
• 27:06
  Speaker 3: but it's really not fixed. Well it's a fixed in
• 27:09
  Speaker 3: a surgery aspect, but he's still dealing with daily struggles
• 27:13
  Speaker 3: from the hirsprungs, if that makes sense.
• 27:16
  Speaker 2: Because I don't know. I don't know this related.
• 27:18
  Speaker 3: But when I tell you he's allergic to everything, everything,
• 27:25
  Speaker 3: really everything.
• 27:27
  Speaker 1: I think diets a funny one. And you're absolutely right
• 27:30
  Speaker 1: when you say that. The word fixed, you know, it
• 27:34
  Speaker 1: just it isn't you know, it's And it's so difficult
• 27:40
  Speaker 1: to say because everyone wants to know, you know, what's
• 27:42
  Speaker 1: going to happen in the future. But we can't tell everyone.
• 27:46
  Speaker 1: We can't tell anybody, you know, because we don't know.
• 27:49
  Speaker 1: And there are people who have one surgery and then
• 27:52
  Speaker 1: everything's you know, buy in large fight. There are people
• 27:55
  Speaker 1: who had surgeries into the hundreds that I've spoken to,
• 27:58
  Speaker 1: you know, so every everything is so so different. And
• 28:04
  Speaker 1: it's interesting you talk about diet as well, because I
• 28:06
  Speaker 1: think that's that's one thing that's being explored a little
• 28:09
  Speaker 1: bit more certainly in Hirshbroung's children and research wise.
• 28:15
  Speaker 2: But when you.
• 28:16
  Speaker 1: Say allergic to everything, and so, do you mean sort
• 28:18
  Speaker 1: of like milk? And I mean I mean.
• 28:23
  Speaker 3: Every So we took him so I initially, okay, so
• 28:28
  Speaker 3: this the allergy test started because I let someone baby
• 28:34
  Speaker 3: sit him and I when I left, I left snacks
• 28:38
  Speaker 3: that were for I mind you, I didn't even know
• 28:39
  Speaker 3: he had allergies. I left snacks for my oldest son.
• 28:44
  Speaker 3: It was a group for his snacks, and I left
• 28:45
  Speaker 3: a snack for him. I had never gave him peanut before. Well,
• 28:49
  Speaker 3: he wanted some of my oldest son's peanut butter crackers
• 28:52
  Speaker 3: that he liked, so she gave him one, and when
• 28:55
  Speaker 3: I got home, he was just throwing up, throwing up,
• 28:58
  Speaker 3: throwing up, And I'm like, I'm oh, gosh, it's just
• 29:00
  Speaker 3: the hirst sprous or is this something else?
• 29:04
  Speaker 2: So, but she was like, I was like, what did
• 29:06
  Speaker 2: he eat? What do you give them?
• 29:06
  Speaker 3: She's like, I gave me fetup cracks, Like girl, I
• 29:08
  Speaker 3: never even gave him peanut better before. So the next day,
• 29:11
  Speaker 3: after he finished from that, I gave him a little
• 29:14
  Speaker 3: I put like a little bit of peanu but on
• 29:16
  Speaker 3: my finger and I gave it. I swell up, just
• 29:20
  Speaker 3: hive immediately. So I took him to the alogies. He's
• 29:23
  Speaker 3: allergic to shellfish, peanuts, like all nuts, corn.
• 29:29
  Speaker 2: Any corn oil, corn anything, sesame, soy, milk, egg, what else?
• 29:37
  Speaker 2: What else is on the list? I think that's it?
• 29:40
  Speaker 2: Corn sets, tome oil, which is that stuff? Isn't isn't everything?
• 29:44
  Speaker 3: Like everything so when it comes to diet is hard because.
• 29:51
  Speaker 2: He's three. He wants to eat all the fun stuff
• 29:54
  Speaker 2: and he wants to eat this or he sees this,
• 29:57
  Speaker 2: and I'm like, you can't have that. I'm sorry, I'm sorry,
• 30:00
  Speaker 2: you can't have that. But I will say he does
• 30:03
  Speaker 2: eat every fruit. Every fruit is his. He does not
• 30:06
  Speaker 2: eat vegetables. I don't know what's going on with that.
• 30:09
  Speaker 2: Don't fight him on it. But okay, he loves chicken naggs.
• 30:14
  Speaker 3: Which you have to read that too, because I bought
• 30:16
  Speaker 3: a new brand of chicken nuggets like a couple of
• 30:18
  Speaker 3: months ago, and not picking anything of it, gave it
• 30:21
  Speaker 3: to him instantly, whole body covered their hives or go
• 30:25
  Speaker 3: read it. It had it had egg and the chicken nuggets,
• 30:30
  Speaker 3: and I'm like, oh my gosh, I didn't even like,
• 30:32
  Speaker 3: why would I switch up his chicken nuggets.
• 30:35
  Speaker 2: So you just got pay attention.
• 30:39
  Speaker 1: That's yeah, that is a tough one with hushbrungs. And unfortunately,
• 30:44
  Speaker 1: again with diet, it's difficult, isn't it to know, well,
• 30:48
  Speaker 1: how much is the hirshbrungs and how much is just
• 30:51
  Speaker 1: you know, normal whatever. But it's it's a tricky one
• 30:57
  Speaker 1: because a lot of it, a lot of it. Unfortunately,
• 31:00
  Speaker 1: it's trial and error just until something goes wrong. You
• 31:05
  Speaker 1: kind of you just keep going.
• 31:07
  Speaker 3: I guess, And I want to say that first year
• 31:11
  Speaker 3: after surgery, I was in the emergency room a lot
• 31:15
  Speaker 3: with him because you, like you said, it's trialey or era.
• 31:18
  Speaker 3: I didn't know what was a regular common stomach bug
• 31:23
  Speaker 3: or what was pol like. I didn't know which one
• 31:26
  Speaker 3: was which. And I'm not a person that's gonna chance it.
• 31:29
  Speaker 3: I rather go to the doctor and you tell me
• 31:30
  Speaker 3: he's fond and to me stay at home and he's
• 31:32
  Speaker 3: not fine. So if I gotta go to the mergency
• 31:34
  Speaker 3: room every time, baby, I'm gonna go every time. So
• 31:38
  Speaker 3: we were there a lot, and sometimes it was a
• 31:40
  Speaker 3: stomach bug. Luckily, thankfully it has never been anything serious
• 31:45
  Speaker 3: because every time we go, and I don't just go
• 31:48
  Speaker 3: to the closest mercy room, I'm going back to where
• 31:50
  Speaker 3: he had the surgery, back to where that surgeon is
• 31:53
  Speaker 3: every time going.
• 31:54
  Speaker 2: I don't care if it's a drive, don't care, we're going.
• 31:56
  Speaker 2: We're going there.
• 31:58
  Speaker 3: And it's probably like a thirty minute drive from us,
• 32:01
  Speaker 3: which isn't too bad, but of course there's close to hospitals,
• 32:04
  Speaker 3: but I'm gonna go back there. But yeah, we did,
• 32:08
  Speaker 3: we didn't been we Now I can kind of gauge
• 32:11
  Speaker 3: what's what. Like last night he threw up and it
• 32:14
  Speaker 3: was green, but it's because he had a fruit loop.
• 32:17
  Speaker 3: But he also threw up because me unknownly, I gave
• 32:21
  Speaker 3: him a little piece of a tempera chicken necket.
• 32:24
  Speaker 2: And it had corn. Oh it was made with corn
• 32:27
  Speaker 2: all and I'm like, oh my gosh.
• 32:28
  Speaker 3: So I had to give him ben a drill because
• 32:30
  Speaker 3: he had the hies. Again, I'm like, oh my gosh,
• 32:32
  Speaker 3: how could I even think that this wasn't something he
• 32:37
  Speaker 3: would be allergic to. But other than that, I know
• 32:41
  Speaker 3: a lot with her schprs. You probably deal with the constipation.
• 32:44
  Speaker 3: We haven't really had any constipation. He poops a lot
• 32:48
  Speaker 3: on his own, so that's pretty good. We haven't had
• 32:52
  Speaker 3: to deal with constapation. Hopefully we don't, but if it comes,
• 32:56
  Speaker 3: I'm okay with it. I try to give him a
• 32:58
  Speaker 3: fibergummy probiotic in a multivitam in every day, so those
• 33:03
  Speaker 3: help with that.
• 33:05
  Speaker 1: Yeah, definitely. I think I've had to chat with several
• 33:08
  Speaker 1: people about probiotics, and that's and that's very highly recommended
• 33:15
  Speaker 1: for children with Hirshbrungs for obvious reasons, kicking everything moving
• 33:20
  Speaker 1: in fiber and having a high fiber diet and stuff
• 33:23
  Speaker 1: that you would expect Hirshbrungs people to have. I think
• 33:29
  Speaker 1: is one of those just going back again to the
• 33:34
  Speaker 1: nick Q because I know you were there obviously said
• 33:38
  Speaker 1: you were there all the time, near enough all the
• 33:42
  Speaker 1: time and many times as you can in terms of
• 33:46
  Speaker 1: sort of nick you support and sort of nurse support,
• 33:54
  Speaker 1: was there anything kind of in place for you and
• 33:58
  Speaker 1: sort of to support you whilst you were obviously going
• 34:01
  Speaker 1: through everything with your son.
• 34:06
  Speaker 3: So originally my husband was supposed to be off for
• 34:11
  Speaker 3: two weeks for return, but once that happened, it's like
• 34:16
  Speaker 3: we had to switch roll.
• 34:17
  Speaker 2: So normally I'm at home with the kids.
• 34:19
  Speaker 3: Now he's at home with the kids, and I'm at
• 34:22
  Speaker 3: the hospital because I'm like I need to be there
• 34:24
  Speaker 3: and at this time they normally let kids in and
• 34:27
  Speaker 3: a queue, but they don't let them in during like
• 34:29
  Speaker 3: flu season, stuff like that cold season. So and during
• 34:36
  Speaker 3: that support what support looked like for me, he had
• 34:40
  Speaker 3: really some really good nurses. Like I I still have
• 34:44
  Speaker 3: the notes in my phone, so anytime they did anything
• 34:47
  Speaker 3: I had, I was writing down the.
• 34:48
  Speaker 2: Time, what they did, what day it was, Who was the.
• 34:52
  Speaker 3: Nurse on his ship, and if I like the nurse,
• 34:55
  Speaker 3: he had stars by her name, so I'll make sure
• 34:58
  Speaker 3: to request her again.
• 35:00
  Speaker 2: Sure she's with him.
• 35:02
  Speaker 3: My mom and my sister as much as I was
• 35:05
  Speaker 3: up there, they were up there, so they would come
• 35:08
  Speaker 3: and sit with me, or even if I did, they
• 35:10
  Speaker 3: would be like, okay, go home, like you need to
• 35:12
  Speaker 3: go home, you need to go to sleep. They would
• 35:14
  Speaker 3: go sit up there when I couldn't.
• 35:15
  Speaker 2: My mom and my sister.
• 35:18
  Speaker 3: When I would come home because I couldn't. You could
• 35:20
  Speaker 3: be in there overnight, but I'm telling you, I'm in
• 35:23
  Speaker 3: there from the moment I wake up about seven o'clock
• 35:26
  Speaker 3: in the morning till about ten o'clock at night, sitting
• 35:29
  Speaker 3: in that chair. And then at key I would bring
• 35:31
  Speaker 3: a lunch, but I would just be sitting there, like
• 35:33
  Speaker 3: now I'm gonna sit here. So I would go home
• 35:36
  Speaker 3: at night because I'm like, Okay, I still have another baby,
• 35:38
  Speaker 3: so I still have to be there for him too,
• 35:39
  Speaker 3: even though I'm still dealing with this.
• 35:42
  Speaker 2: So I would go.
• 35:42
  Speaker 3: Home so to give me comfort. My mom and my
• 35:44
  Speaker 3: sister would go sit up there to support me and dad,
• 35:48
  Speaker 3: or before I would go to bed. Every night I
• 35:50
  Speaker 3: would call because you could even call and they'll give
• 35:53
  Speaker 3: you an update. How's he doing if anything happened, what
• 35:57
  Speaker 3: he's doing right now? Oh, he had a bath, he's sleeping,
• 36:00
  Speaker 3: So that would help me, like be able to go
• 36:03
  Speaker 3: to sleep, so I can go to sleep.
• 36:04
  Speaker 2: When I can be right back there in the morning.
• 36:07
  Speaker 3: So so thankful for my mom and my sister because
• 36:09
  Speaker 3: when I couldn't be there, they were there.
• 36:11
  Speaker 1: And yeah, yeah, I think absolutely having that support system
• 36:18
  Speaker 1: is obviously, you know, those so important, especially when you're
• 36:21
  Speaker 1: going through things and you don't necessarily know, you know,
• 36:26
  Speaker 1: what the immediate future holds, you know, kind of going
• 36:30
  Speaker 1: into the unknown. Having that support system is obviously vital.
• 36:35
  Speaker 1: If we moved sort of towards now, I know he said,
• 36:39
  Speaker 1: your sons three in terms three go thirty.
• 36:47
  Speaker 2: I'm gonna let you meet him too.
• 36:52
  Speaker 1: But yes, so in terms of his future, I know
• 36:57
  Speaker 1: he says he's had one one surgery already. What sort
• 37:02
  Speaker 1: of sort of both medically and non medically, do you
• 37:08
  Speaker 1: see and hope for him in the future.
• 37:11
  Speaker 3: Um, so we medically wise We see the GI doctor
• 37:18
  Speaker 3: every six months, depending on if we had any scares
• 37:23
  Speaker 3: at the hospital. He does stool samples every time, just
• 37:27
  Speaker 3: to check his stool samples. And when he's been looking
• 37:30
  Speaker 3: at his stool samples, he hasn't seen anything that's alarming
• 37:33
  Speaker 3: to where he wants to put him on a daily
• 37:35
  Speaker 3: antibiotic because that's that that could be a thing M.
• 37:43
  Speaker 2: Future.
• 37:44
  Speaker 3: I want him to like once he's a little older,
• 37:47
  Speaker 3: of course, I want him to understand his allergies, but
• 37:50
  Speaker 3: I also want him to understand his hairsprungs. I want
• 37:53
  Speaker 3: him to know what it is, how to manage it, and.
• 38:01
  Speaker 2: Things like that, like we haven't been able to.
• 38:04
  Speaker 3: Like he's ready to potty train, like he knows when
• 38:08
  Speaker 3: he has to go to the bathroom, he can tell
• 38:10
  Speaker 3: you he has to poop.
• 38:12
  Speaker 2: But lately, and this might be TMI, but we're talking
• 38:16
  Speaker 2: about pooping and testing those sora, and lately, it's hard
• 38:21
  Speaker 2: to potty train because.
• 38:25
  Speaker 3: He can't I don't want to. He can't trust a
• 38:30
  Speaker 3: fart right now, you get what I'm saying. So it's
• 38:34
  Speaker 3: hard to leave him without a pull up or a
• 38:36
  Speaker 3: diaper and just let him be in the underwear, Like
• 38:39
  Speaker 3: he prefers, because he can't.
• 38:41
  Speaker 2: Trust it sometimes.
• 38:44
  Speaker 3: Let's see one hundred percent right now, lately the last
• 38:49
  Speaker 3: two weeks has been kind of crazy. So I'm gonna say,
• 38:51
  Speaker 3: like the last two weeks eighty percent, you can't trust
• 38:54
  Speaker 3: the fart.
• 38:54
  Speaker 2: You can't. You can't, So I can't just leave you
• 38:58
  Speaker 2: in the underwear, like he prefers. He wants to be
• 39:00
  Speaker 2: in an underwear. He like he sees his brother, he
• 39:02
  Speaker 2: wants to be in an underwear and he wants to
• 39:04
  Speaker 2: just go to the bathroom by hisself.
• 39:07
  Speaker 3: But we can't trust it because we're at home and
• 39:12
  Speaker 3: you know you're that's happening, or we're out and you're
• 39:15
  Speaker 3: in the regular clothes and then we gotta or because
• 39:18
  Speaker 3: they are the stage where they're older.
• 39:19
  Speaker 2: Now I'm not carrying around a diaper bag.
• 39:22
  Speaker 3: So yeah, so that's where we're at right now. And
• 39:27
  Speaker 3: then another thing I do want to mention because nobody
• 39:31
  Speaker 3: else in my family has Hirshbrung. So I did have
• 39:35
  Speaker 3: a third baby. So when I had her, I was
• 39:41
  Speaker 3: nervous to go have her because they said that it
• 39:43
  Speaker 3: could be possible that the next sibling or next baby
• 39:47
  Speaker 3: that I had had Hirschbrung So that was a scary.
• 39:53
  Speaker 2: A scary birth too, because I went in and that
• 39:58
  Speaker 2: was a meeting to what I'm thinking.
• 40:00
  Speaker 3: But you're you're thinking, Okay, she could possibly have it,
• 40:03
  Speaker 3: but it could also be possibly way worse than what
• 40:06
  Speaker 3: he had. So I'm literally crying on the table before
• 40:11
  Speaker 3: they even started, I'm crying and think. And then once
• 40:16
  Speaker 3: we got out and they finished wrapping me up for
• 40:19
  Speaker 3: my c section, my husband when they roll me back
• 40:21
  Speaker 3: in the room and he had the baby, he was like.
• 40:23
  Speaker 2: She pooped, she pooped or.
• 40:24
  Speaker 3: Whatever, And I just start crying so hard because I'm like,
• 40:27
  Speaker 3: thank you stuff. But she ended up not having it either.
• 40:30
  Speaker 3: And I know sometimes siblings.
• 40:32
  Speaker 2: Might have it.
• 40:32
  Speaker 3: So that's just a little hope for somebody that you know,
• 40:35
  Speaker 3: probably dealing with that that maybe they can have it,
• 40:38
  Speaker 3: maybe they won't have it.
• 40:39
  Speaker 2: I mean, you never know.
• 40:40
  Speaker 1: But it's very true. Yeah, very very true. Same same
• 40:45
  Speaker 1: in my family. I mean, I'm the second of four.
• 40:49
  Speaker 2: Oh boy, so nobody else has it.
• 40:52
  Speaker 1: Nope, older brother doesen't, two, younger brothers doesn't, none, none
• 40:56
  Speaker 1: of the rest of my family, nobody just me. Why no, Yeah,
• 41:03
  Speaker 1: That's what I tell myself. But it's yeah, so so
• 41:08
  Speaker 1: so it is. It can be very random and very
• 41:13
  Speaker 1: difficult to sort of predict. I mean it is, it
• 41:19
  Speaker 1: is very tricky and and that's but that's a really
• 41:22
  Speaker 1: interesting bit just to share. If people do have Hirshbunp's
• 41:25
  Speaker 1: children and are looking to have more children, may not
• 41:30
  Speaker 1: necessarily it's not one hundred percent guarantee that the next
• 41:34
  Speaker 1: child along he's going to have hirshbruns for sure. But no,
• 41:38
  Speaker 1: thank you, thank you ever so much for coming on.
• 41:41
  Speaker 1: It's been a pleasure to have you on. And I
• 41:43
  Speaker 1: just wanted to say also, you've been a fantastic supporter
• 41:49
  Speaker 1: of this podcast. Every every TikTok I post, you like him,
• 41:55
  Speaker 1: you like everything, so every socialtic TikTok everybody.
• 42:00
  Speaker 2: No, thank you.
• 42:01
  Speaker 1: So so much for coming on, and obviously all of
• 42:04
  Speaker 1: the stuff that you do with your tiktoks and et cetera.
• 42:09
  Speaker 1: If people don't know where to where to find your
• 42:12
  Speaker 1: your tiktoks, where can they find them?
• 42:17
  Speaker 3: And they can find them at Bnbria that's b E
• 42:20
  Speaker 3: E I N G b R.
• 42:23
  Speaker 1: I a fantastic tik tire, brilliant and tiktoks. Yeah, TikTok's
• 42:33
  Speaker 1: better for that kind of stuff. Definitely, definitely, but I
• 42:38
  Speaker 1: very much wish you and your son all the very
• 42:42
  Speaker 1: very best for everything in the future. So much for
• 42:45
  Speaker 1: covering on.
• 42:46
  Speaker 3: Thank you so much for you and your health and
• 42:49
  Speaker 3: your podcast, everything big things for you.
• 42:56
  Speaker 1: Thank you for listening and being part of this growing community.
• 43:00
  Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
• 43:02
  Speaker 1: leave a review, and share it with someone who might
• 43:05
  Speaker 1: need it. You can connect with us on social media
• 43:08
  Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
• 43:14
  Speaker 1: See you next week.