Latest / Tom's Hirschsprung's Podcast / Episode 79 - With Libby

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Episode 79 - With Libby · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprun's podcast, where our provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
0:43
Speaker 1: episode seventy nine of Tom's Hirshprunks podcast. I am delighted
0:48
Speaker 1: to welcome Libby to the podcast. Libby, welcome, Hello, Thanks
0:54
Speaker 1: so much for coming on.
0:56
Speaker 2: Hi.
0:57
Speaker 1: Now we are going to talk about your daughter who
1:01
Speaker 1: has Hirshprungs disease and with no again, like a lot
1:06
Speaker 1: of people, I mean, with no family history, family connection
1:10
Speaker 1: to Hirshprungs or GI disorders or anything like that, I
1:16
Speaker 1: guess would you like to take us from the very beginning.
1:20
Speaker 2: Yes. So I got pregnant with Tala, and I add
1:25
Speaker 2: a bit of a rough pregnancy. I add hyperemesis, which
1:29
Speaker 2: is where you vomit a lot of times through the day.
1:33
Speaker 2: So it was always a rough thought, and I didney
1:35
Speaker 2: for a while. So my woody was that she was
1:37
Speaker 2: going to be premature, and then we got to hear
1:41
Speaker 2: the end. And I add another thing called colostasis, which
1:45
Speaker 2: is to do with your liver function when you're pregnant.
1:48
Speaker 2: So I add woodies anyway about when she would be born,
1:51
Speaker 2: and then I got induced about three weeks early. She
1:56
Speaker 2: come out to pay for every fun actually come out
2:01
Speaker 2: not premature. She was a perfect weight. She was six
2:03
Speaker 2: pound four and she was just perfectly fine. And then
2:07
Speaker 2: when we got put on the board, I just noticed
2:10
Speaker 2: this green stuff that she was spitting up and it
2:12
Speaker 2: looked like flem from adults, which is obviously strange. So
2:16
Speaker 2: I kept asking them midwife. So I'm very persistent, like
2:19
Speaker 2: I'm not shy, I will go at them, and I
2:22
Speaker 2: said what is this and they kept saying it's amniotic fluids.
2:25
Speaker 2: Then another nase told me that it was just like
2:28
Speaker 2: build up of fluids from in a lungs when she'd
2:31
Speaker 2: been in the womb, and I didn't believe it. So
2:35
Speaker 2: in the end, the centre zoom after she was born
2:38
Speaker 2: on a Friday, and we got ten toom Saturday morning,
2:41
Speaker 2: and I added a terrible labor anyway, so I was
2:44
Speaker 2: wanted in a wheelchair because I couldn't walk after the labor,
2:48
Speaker 2: and the night the day we got home Saturday, she
2:52
Speaker 2: still had not drunk a bottle at all. She had
2:54
Speaker 2: not passed the balm reason since she'd been born, so
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Speaker 2: they should not have discharged us whatsoever. And then when
3:01
Speaker 2: we got home, I was so paranoied to couldn't sleep
3:04
Speaker 2: because I thought, I've added the child before. I know
3:07
Speaker 2: that this is not normal, that she's not drinking at all.
3:10
Speaker 2: And then I was trying to convince myself, maybe she's
3:13
Speaker 2: just the tire baby. You know. The labor was a
3:15
Speaker 2: patrol out of Maybe she just exhausted. I was trying
3:19
Speaker 2: to convince myself. Anyway, I knew I was wrong. And
3:23
Speaker 2: then I didn't know that they did this anymore. But
3:26
Speaker 2: we had a midwife's tain up on our door, and
3:29
Speaker 2: she literally saved the life. And this midwife came and
3:32
Speaker 2: I'll never forget that. She was the loveliest woman ever.
3:34
Speaker 2: And she came in and I have kept the blanket
3:37
Speaker 2: that she kept throwing the green stuff up on. And
3:40
Speaker 2: I showed us to the midwife and I said, she's
3:41
Speaker 2: still not drinking, she's not had a bar a movement,
3:43
Speaker 2: and this is what is coming up. And she said,
3:46
Speaker 2: goes to all to egy like now. So we went
3:50
Speaker 2: straight at all today and they just rushed us straight in. Now,
3:53
Speaker 2: I thought they're being cautious because she's a baby. But
3:56
Speaker 2: as we've got rushed in, all the surgeons were already there,
3:59
Speaker 2: so it was like they already has an idea from
4:01
Speaker 2: what I've told them, like over the phone sort of thing.
4:06
Speaker 2: And they put the empty tube straight in to find
4:08
Speaker 2: out what the green stuff was coming out, and the
4:10
Speaker 2: bag fills up full within five minutes of like green
4:16
Speaker 2: bile sort of which was basically the obstruction. Anything that
4:21
Speaker 2: was going in was coming back up from a ball.
4:25
Speaker 2: So the surgeon basically eat odd of a idea, and
4:30
Speaker 2: he said, you know, I think she's got a bile obstruction.
4:33
Speaker 2: We think it could be something called taste Sprungs disease.
4:35
Speaker 2: So I'm like, I couldn't even spell it with my
4:38
Speaker 2: heads was just gone. And then when we had a
4:41
Speaker 2: look online, I was like, it's that and I knew
4:43
Speaker 2: it was. I said to me moment, I said it's that,
4:45
Speaker 2: and he was like, no, just it might not be.
4:47
Speaker 2: And I said, is that I know it is, And
4:49
Speaker 2: he said the only way for us to really find
4:51
Speaker 2: out is to operate, So we'll do open bial surgery
4:55
Speaker 2: and we'll be able to have a look and see
4:58
Speaker 2: ourselves what it is. So they did that anyway, in there,
5:02
Speaker 2: and then he put the son in because she had
5:04
Speaker 2: the obstruction and he knew what it was. So now
5:07
Speaker 2: at this point he didn't remove any other ball because
5:10
Speaker 2: they wanted to do biopsies and stuff, and they wanted
5:13
Speaker 2: to see how bad the hair sprungs was. So he's
5:17
Speaker 2: done the biopsies and they put the sommering. Now, when
5:19
Speaker 2: she got back from the surgery, matt eyes showed like
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Speaker 2: a fulfilled I didn't even know what was going on,
5:24
Speaker 2: like Handelarius from the plain medication from Liba, and I
5:29
Speaker 2: didn't even know that people have the stone and they
5:31
Speaker 2: did tell me, but like I was that all over
5:35
Speaker 2: the place when they brought it back. I've seen this
5:37
Speaker 2: thing on a belly, so I just went to move
5:39
Speaker 2: it like a piece of tissue and I moved it
5:40
Speaker 2: and it was a stomach and I was like, oh
5:42
Speaker 2: my god, what is that? As I knew what it was,
5:44
Speaker 2: I was crying and everything. And then yeah, that's when
5:48
Speaker 2: she got the soma. And then the biopsies came back
5:51
Speaker 2: that she had long segments, which is I think there's
5:55
Speaker 2: four knaves in the bar and a longer think it's
5:58
Speaker 2: around four major nerves in the bar. That needs to
6:01
Speaker 2: push things through roughly about that and basically like three
6:06
Speaker 2: of theirs was non working, so it was very great
6:10
Speaker 2: chance that she could coope without a stummer. And then
6:15
Speaker 2: I'm trying to think what happened from there, basically the
6:19
Speaker 2: stonema traders in the hospital and stuff. And I got
6:22
Speaker 2: really overwhelmed in the first two days. I couldn't do it.
6:24
Speaker 2: I was saying, so, I can't do it, like I
6:26
Speaker 2: don't understand it and I've never seen anything like you.
6:30
Speaker 2: And he was saying, we can't let you go home
6:32
Speaker 2: until give tony. So I had to learn it. And
6:36
Speaker 2: I'm like a prow about it now, but at the
6:37
Speaker 2: can it was just terrifying, terrifying, And then we got
6:42
Speaker 2: to charge and then that was literally the only thing
6:47
Speaker 2: about the case Sprungs we ever got to spoke to about.
6:51
Speaker 1: Wow, that's quite a whirlwind first week or so I
6:56
Speaker 1: would imagine.
6:57
Speaker 3: Yeah, Yeah, I mean I have so much respect for
7:03
Speaker 3: mothers and parents who you go in to labor and
7:07
Speaker 3: you expect, you know, things to be totally normal, and
7:10
Speaker 3: then within a week you are an expert in stonemacare.
7:13
Speaker 1: Yeah, it is unbelievable.
7:16
Speaker 2: It was a lot. Yeah, and because usually when your
7:19
Speaker 2: baby's born, that faced which is like the best because
7:21
Speaker 2: you're in lack of bubble and it's all just exciting
7:24
Speaker 2: and new. And that that we was probably i'd say
7:26
Speaker 2: the most traumatic wish in my life that I've ever
7:30
Speaker 2: been through, as well as the fact that I couldn't
7:32
Speaker 2: even walk, and like I was in a wheelchair, so
7:36
Speaker 2: it was just I get and pushed around all the
7:38
Speaker 2: day in a wheelchair. People saw that I was the
7:40
Speaker 2: patients because I was in a wheelchair. It was so
7:44
Speaker 2: strange and I was thinking back to it. It's like
7:47
Speaker 2: me brain as cut off some of the bad bits
7:51
Speaker 2: that I don't remember. It's like that makes sense.
7:54
Speaker 1: Yeah, it's a trauma response. Yeah, yeah, absolutely, your brain
7:59
Speaker 1: will Yeah, not that I'm an expert in this at all,
8:01
Speaker 1: but your brain will cuss off certain bits that are incredibly.
8:06
Speaker 2: Yeah, because some of it, some of it is Blurredy.
8:09
Speaker 2: I just remember like the important detales, but then the
8:12
Speaker 2: bits in between, like the recovery from the surgery. I
8:15
Speaker 2: was on edge that machine that was beepn is still
8:18
Speaker 2: increased in my brain.
8:20
Speaker 1: Yeah, and then there might as well, there might well
8:22
Speaker 1: be you know, things that I've seen, I heard happen
8:26
Speaker 1: to other people where you will completely forget about something
8:30
Speaker 1: for years and years and years, and then there'll be
8:32
Speaker 1: something that triggers it off and you'll remember it really,
8:37
Speaker 1: really clearly. So those bits that are quite fuzzy at
8:39
Speaker 1: the moment might end up just being really really cool
8:43
Speaker 1: just and it could be the simplest thing that triggers
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Speaker 1: that off.
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Speaker 2: The beepn the beeper. So anytow we go to hospital now,
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Speaker 2: which obviously can be quite frequent, I'm okay, is until
8:55
Speaker 2: I hear that people, and then it's my body goes
8:58
Speaker 2: into fight or flight and a star shape. Yeah, and
9:01
Speaker 2: I started sweating, and I asked, like panic attacks over
9:03
Speaker 2: that noise?
9:05
Speaker 1: Yeah, yeah, no, that makes absolute sense. But I can't
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Speaker 1: imagine you'd watched many episodes of Casualty or Holy City.
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Speaker 2: I would watch any and Hell's release of Now.
9:18
Speaker 1: I don't blame you at all. I don't blame you.
9:22
Speaker 1: The one thing that does really surprise me is that
9:27
Speaker 1: from correct me if I'm wrong. But the birth wasn't
9:32
Speaker 1: at older Hay was at another hospital, and they discharged
9:37
Speaker 1: you without the bowel movement with the not everyone new
9:43
Speaker 1: at the time, but the green vial being thrown up
9:45
Speaker 1: as well. I'm amazed they were allowed to do that.
9:50
Speaker 1: Did they explain or did you ask them why? So
9:54
Speaker 1: after everything had sort of settled down.
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Speaker 2: Over bit, So what happened was when we originally got
10:00
Speaker 2: it all today, you know the way you want to
10:02
Speaker 2: have like words, this isn't I don't want to say
10:05
Speaker 2: the wrong way, but like that the high up basically
10:07
Speaker 2: aren't they And we had one come to see yours,
10:09
Speaker 2: like a very senior high person and all today and
10:12
Speaker 2: she said kind of see the red book and now
10:14
Speaker 2: the red books where they checked the stuff off, and
10:15
Speaker 2: she said, I'm ringing them and she was read like
10:19
Speaker 2: she was furious, and she basically rang the women's hospital
10:22
Speaker 2: herself and was like, you know, a baby's nearly lost
10:24
Speaker 2: their life because you didn't do the like correct checks.
10:28
Speaker 2: Like it's it's a duty of care that is a fail.
10:32
Speaker 2: And I was just in so much shock of the
10:33
Speaker 2: town that I couldn't evenly comprehend what has happened. And
10:37
Speaker 2: then I'd say about two months later, I did go
10:39
Speaker 2: down the legal routes of medical negligence, and a base
10:43
Speaker 2: of every solicitor went who said, the same thing, it's
10:47
Speaker 2: it's it's true, but it's frustrating basically because no matter
10:51
Speaker 2: what would have happened, she had this disease regardless. Because
10:56
Speaker 2: they haven't caused her to have it, they can get
11:00
Speaker 2: away with it, basically. But whereas if she did lose
11:03
Speaker 2: a lice, thank god she never, then someone would only
11:06
Speaker 2: get on about it. But why does it teach a
11:08
Speaker 2: baby to lose the lice? Is something to be done?
11:10
Speaker 2: This could happen to someone else where someone else isn't
11:13
Speaker 2: us as paramois as me, and they don't go to
11:15
Speaker 2: the hospital over the same thing ideas, and their baby
11:18
Speaker 2: does have a ball obstruction and passes away. These should
11:22
Speaker 2: be held accountable and as did put a formal complaint
11:25
Speaker 2: in and they wanted me to go in the hospital
11:29
Speaker 2: to discuss it. But my trauma is based around my
11:33
Speaker 2: labor and what happens afterwards. And I will never in
11:35
Speaker 2: my life step up to the hospital ever again in
11:38
Speaker 2: my life. All the night is different because they said
11:41
Speaker 2: it and they did an amazing hospital, but the women's
11:44
Speaker 2: hospital where I will never step us in the hospital
11:47
Speaker 2: ever again in my life. And I will never have
11:49
Speaker 2: children after more children after what happens.
11:52
Speaker 1: Yeah, yeah, no, I don't I don't blame it. It's
11:55
Speaker 1: so frustrating that the legal system is effective. Yeah, you
12:02
Speaker 1: or there's.
12:03
Speaker 2: A lot of mums who I know have been in
12:05
Speaker 2: not similar situations, but ways where they baby has passed
12:08
Speaker 2: away in that hospital due to their negligence and not
12:11
Speaker 2: one can get on about it because the NHS is
12:15
Speaker 2: just like underfunded and understaffed and all that, which so
12:19
Speaker 2: with the ends of saving Whose fault is it, Because
12:21
Speaker 2: you can't blame the actual nurses in that moment, because
12:24
Speaker 2: they do and what they'd advised to do, which obviously
12:27
Speaker 2: is not a lot because they haven't got the funding
12:29
Speaker 2: for the law. But at the same time, to win
12:32
Speaker 2: the proper checks. It doesn't cost any money to check
12:34
Speaker 2: a baby's bar properly. It doesn't cost anything. It takes
12:37
Speaker 2: an extra of the five minutarial days they would have
12:40
Speaker 2: seltair bar. They would to sell out the stands as
12:42
Speaker 2: it was, and how strolling it was, and they was
12:44
Speaker 2: new there and then that's something was wrong and we
12:46
Speaker 2: could have got transferred straight from the women's hospital to
12:49
Speaker 2: all to day wherein staid they've sent us home and
12:52
Speaker 2: that one night we had at he was so risky
12:55
Speaker 2: and it was very lucky that she survived that one
12:58
Speaker 2: nice yeah before I was get into the hospital.
13:02
Speaker 1: Yeah, most definitely. And I just think that's again, four
13:09
Speaker 1: nine hundred and ninety nine out of the five thousand
13:11
Speaker 1: babies that are born, you know will pass mycodium. You know,
13:15
Speaker 1: you won't you know, won't worry about it. They will,
13:19
Speaker 1: they will pass. But it's that one in five thousand
13:24
Speaker 1: that or there or thereabouts.
13:26
Speaker 2: And they actually marked down actually did pasta. So that's
13:29
Speaker 2: the bar movements, isn't it. Like they put down that
13:32
Speaker 2: you pasta. And when I got home and I checked
13:35
Speaker 2: and I told the midwife, you kin styles, she said
13:38
Speaker 2: she has not passed that, and she said you need
13:40
Speaker 2: to go, like right now. They should never have let
13:42
Speaker 2: you leave, no.
13:44
Speaker 1: And thankfully the midwife knew that because again, like you said,
13:49
Speaker 1: if the midwife hadn't turned up.
13:51
Speaker 2: I possibly would have left her, Yeah, and it would
13:54
Speaker 2: have been disasters. And that midwife genuinely saved their life.
13:58
Speaker 2: And that midwife also does a clinic and all today,
14:00
Speaker 2: so we do still see her sometimes and we flowers
14:04
Speaker 2: and stuff afterwards, because if she genuinely never turns and
14:08
Speaker 2: I didn't even know that she was coming, so she
14:10
Speaker 2: never pandle or we went home. Well you never know
14:13
Speaker 2: records of happenings.
14:14
Speaker 1: Well, yeah, dread to thing. But yeah, it's yeah, but
14:18
Speaker 1: it's it is.
14:19
Speaker 4: It's just.
14:21
Speaker 1: It is negligence and it is.
14:23
Speaker 4: It is definitely gets like some sort of apology because
14:27
Speaker 4: obviously it's it's cut and dry as far as I
14:31
Speaker 4: see it, it's you know, they were supposed to do X.
14:35
Speaker 1: They didn't do X. You know, I mean, and it's
14:39
Speaker 1: there in you know, black and white. Yeah, and so
14:43
Speaker 1: they wanted you to discuss it then.
14:46
Speaker 2: Yeah, So like they basically wouldn't move forward with the
14:48
Speaker 2: complaint unless I went in and formally spoke to them,
14:51
Speaker 2: which I'm not comfortable to do and sort of when
14:54
Speaker 2: a lot of my trauma drama is based around what
14:57
Speaker 2: you did or didn't do, and I don't feel comfortable
15:01
Speaker 2: going in there and hating an apology that just doesn't
15:05
Speaker 2: really mean anything because she's probably going to do it
15:06
Speaker 2: to other mums in the future because did you do
15:09
Speaker 2: get you in, have your baby and they brush ab
15:11
Speaker 2: how does not enough after care, even not even what
15:15
Speaker 2: she had when I when she was born. I was
15:17
Speaker 2: severely neglected after after my labor when I did get checked.
15:21
Speaker 2: They so I had some calls and a plesiostomy where
15:25
Speaker 2: they have to basically have to slice. She had to
15:27
Speaker 2: help four steps and they sliced my leg without informing me.
15:31
Speaker 2: And when I seen that midwife she checked me over
15:34
Speaker 2: and there was a big slice on my leg and
15:36
Speaker 2: that was the reason I couldn't walk, because it was
15:38
Speaker 2: an open wound rubbing on the other leg. And I
15:41
Speaker 2: put another complaints in about that, and I thought I
15:43
Speaker 2: couldn't walk just because of the labor And it was
15:44
Speaker 2: because of that. And I also put that in the complaints,
15:49
Speaker 2: not on no apology, nothing, that's so lensus.
15:53
Speaker 1: Yeah, that's awful. It was the word for it that
15:58
Speaker 1: that that is so not only did they not check
16:01
Speaker 1: for hirstpruings.
16:03
Speaker 2: And we never discharged me with any pain medication mind
16:06
Speaker 2: or actually had a ring them the next day and
16:08
Speaker 2: say he's a discharger with nothing, no paintiless. They told
16:12
Speaker 2: me to say patasy.
16:13
Speaker 1: Someone, oh for a sliced leg.
16:15
Speaker 2: Yeah, but it was that's why I will never have
16:18
Speaker 2: any more children. And if it did, I wouldn't. I
16:19
Speaker 2: would knock into the hospital.
16:21
Speaker 1: No. And andfortunately you are near a hospital that a
16:26
Speaker 1: lot I speak to a lot of people that are
16:28
Speaker 1: Older Hay and they constantly tell me how good it is,
16:32
Speaker 1: and I know it's Hirshprung's specialist site, Yeah.
16:37
Speaker 2: Which is lucky for us because like we live so
16:41
Speaker 2: close to them, and like if we if we lived
16:44
Speaker 2: in a different place and we went to a different
16:46
Speaker 2: hospital and they didn't know aboltage brings disease, it could
16:48
Speaker 2: have gone missed again. Whereas we were so lucky that
16:50
Speaker 2: we had mister Taylor who was our surgeon. He was
16:54
Speaker 2: the first surgeon that we've seen and he's still our
16:56
Speaker 2: surgeon now and he was honestly amazing. He just knew
17:00
Speaker 2: straight away.
17:01
Speaker 1: Yeah no, And that's that's really reassuring as well to
17:05
Speaker 1: know that, because there are a lot of people who
17:09
Speaker 1: maybe aren't based in the Liverpool, but they do get
17:10
Speaker 1: sent to Old Hay because it is a specialist center
17:14
Speaker 1: and if there's one thing they do know about it is.
17:19
Speaker 2: They definitely know a lot. Definitely, especially mister Taylor to
17:24
Speaker 2: even be able to diagnose without even looking at the
17:28
Speaker 2: bow or any and you know, he must he must
17:31
Speaker 2: be very.
17:32
Speaker 1: On the ballard. Yeah, yeah, most definitely. And there's a
17:35
Speaker 1: lot of people there that you know, not just know
17:38
Speaker 1: how to diagnosed, but also, like you said, the aftercare,
17:42
Speaker 1: you know that that's so so important to me because
17:46
Speaker 1: I think, oh, you're diagnosed with hirshpungs. Again. I see
17:49
Speaker 1: this is a lot just online where people say, oh,
17:52
Speaker 1: you're diagnosed with hirshprungs, you had your surgery, you're now
17:55
Speaker 1: fixed in Inversey commas.
17:57
Speaker 2: Yeah, it definitely does not wear.
17:58
Speaker 1: It's like that, absolutely not. And they so you've had
18:03
Speaker 1: your surgery, you've had the pull through, and now everything's fixed,
18:07
Speaker 1: and you're all, Okay, it's like, it doesn't it doesn't
18:10
Speaker 1: work like that, and especially ye know we're having I
18:15
Speaker 1: think it's five five different types of hairsprungs. There's so
18:18
Speaker 1: many different types and even two people with the same
18:22
Speaker 1: long segment won't have the same lives.
18:25
Speaker 2: Yeah, it's very it's very different, isn't it. Like in
18:29
Speaker 2: terms of how a person can react to it. Someone
18:32
Speaker 2: can have a pull to dough and remove the stumber
18:34
Speaker 2: and then be payfectly fire, whereas all can get a
18:36
Speaker 2: pull through and it's it's still not work for them
18:40
Speaker 2: and the ends up needing to keep the summer. And
18:42
Speaker 2: we actually decided to keep dollars foamer. For the fact
18:47
Speaker 2: of I'd say it was the twenty twenty three d
18:52
Speaker 2: she was born. She had ens localitis, which is a
18:55
Speaker 2: common foweling section that you can get with hair shprngs's use,
18:59
Speaker 2: and they actually removed most of her bow that was
19:02
Speaker 2: affected because that was what was causing the infection. But
19:05
Speaker 2: in the process of removing that, he's done the pull through,
19:07
Speaker 2: but he's kept the stormer. And then I basically did
19:11
Speaker 2: my own resach to decide whether or not we wanted
19:14
Speaker 2: to try the pull through. I decided against. Basically, we
19:19
Speaker 2: find out that if you've got long chegums and you've
19:21
Speaker 2: had the pull through, your bowl is very very limited
19:24
Speaker 2: and small after a pull through, if you've had most
19:27
Speaker 2: of your bar removed. So for Dala to be able
19:30
Speaker 2: to go to the toilet, she could need to go
19:32
Speaker 2: to the toilet up to twenty times a day through
19:35
Speaker 2: to adult life where she may need to wear nappies
19:38
Speaker 2: into the future and adult life. And I didn't see
19:40
Speaker 2: that as a way of life through a young girl.
19:43
Speaker 2: And I don't think a stonma limited in any way.
19:48
Speaker 2: I thought only with a certain few foods actually can
19:50
Speaker 2: eat other than that she's literally the happiest child you
19:54
Speaker 2: will ever see. And a lot of people said, well,
19:57
Speaker 2: you're not worried she'll get bullied, and I said, well,
20:00
Speaker 2: I'd be a lot more worded about to having to
20:01
Speaker 2: go to school in a nappy at the age of
20:04
Speaker 2: twelve instead of a stoma bag that can be concealed.
20:08
Speaker 2: No one can see it, you know, it's it's very
20:11
Speaker 2: hidden and it's safer.
20:14
Speaker 1: Yeah, for her. Yeah. No, I think again, when when
20:18
Speaker 1: you mentioned the word stonma to people, especially, you know, if.
20:21
Speaker 2: You say I'm scared, isn't it like do you think
20:23
Speaker 2: you know? Yeah?
20:24
Speaker 1: Yeah? And when you mentioned that to people, they go,
20:28
Speaker 1: oh no, no, no, I don't want a stoma, you know,
20:31
Speaker 1: I don't want I don't want one of those, you know,
20:34
Speaker 1: and do everything they can to to possibly avoid it.
20:38
Speaker 1: But actually, like you said, quality of life is everything.
20:42
Speaker 2: Oh, it's even every and it's such an like. I
20:45
Speaker 2: was also a bit nervous, well to the monom, I
20:47
Speaker 2: say as well, it was what if she gets budies?
20:48
Speaker 2: And then I thought, well, I'd rather be alive than
20:51
Speaker 2: any and I don't care about anything else as long
20:53
Speaker 2: as that she's alive and she's just started there. She
20:57
Speaker 2: now strange to me because I always wonder what a
21:00
Speaker 2: stoner was. Yeah, and I think there's so many people
21:04
Speaker 2: now now that I started talking about it on my
21:06
Speaker 2: social media, there's so many people that I actually know
21:09
Speaker 2: in real lice who've got one or have got to
21:12
Speaker 2: get one. And it's actually more common than people think.
21:15
Speaker 2: But no one likes to talk about it for the
21:17
Speaker 2: simple factors to do with the ball. It's one of
21:19
Speaker 2: them things that people shy away from.
21:21
Speaker 1: It's yeah, it can be one of those taboo subjects. Yeah,
21:25
Speaker 1: it kind of. But I think it's becoming a lot more,
21:29
Speaker 1: like you said, with TikTok, with Instagram, you know, people
21:32
Speaker 1: are becoming a lot more open. We especially stormer bags
21:36
Speaker 1: as well. I then like Instagram is full of people
21:39
Speaker 1: who've gotten new Stoma bags want to show up.
21:43
Speaker 2: There's actually a woman on TikTok called Stonema Babe, and
21:46
Speaker 2: one of my also what he was, do you know
21:49
Speaker 2: she is?
21:49
Speaker 1: She's just on the marathon't yeah, so.
21:52
Speaker 2: What my other bodies was Everyone listening to me like
21:54
Speaker 2: why she can never have kids? And my fans Stoma
21:56
Speaker 2: babe and she's just had a baby. And while she's
21:59
Speaker 2: got a somach. So I love watching her because she's
22:03
Speaker 2: she's stunning as well, and like you would not know
22:06
Speaker 2: just by looking at it that he's got Assumer. She's
22:08
Speaker 2: honestly stunning and she's just a lovely person. She raises
22:11
Speaker 2: away and I suppose as well, which I think is amazing.
22:13
Speaker 2: And I learned a lot of stuff just from watching her,
22:16
Speaker 2: and like the different products that I've never heard of,
22:18
Speaker 2: I like. So I think TikTok is amazing for things
22:23
Speaker 2: like this because you learn a lot. This is where
22:25
Speaker 2: I've learned most of my stuff from TikTok.
22:29
Speaker 1: Yeah, yeah, And I think you know, hospitals will give you,
22:34
Speaker 1: you know, little bits of information. They might if you're
22:36
Speaker 1: very lucky, they might give you a leaflet. But if
22:40
Speaker 1: you're lucky, but they you know, and they'll give you
22:45
Speaker 1: all the physical info you know, how to do the washouts,
22:49
Speaker 1: how to do this and that, and possibly some products
22:53
Speaker 1: to use. But actually social media is again the social
22:59
Speaker 1: media can be infield and there's lots of misinformation on there,
23:02
Speaker 1: and there's lots of you know, there's lots of everything,
23:05
Speaker 1: the good, the bad, everything. But so long as you
23:09
Speaker 1: follow the right people and you learn a lot you do,
23:13
Speaker 1: you really really do. I mean I've had TikTok for
23:16
Speaker 1: like a month or something. I barely barely started it.
23:20
Speaker 2: It's such a good platform for spreading information, but especially
23:25
Speaker 2: well health related stuff. It sounds my book. People are
23:28
Speaker 2: TikTok scene all of it, and I think that's because
23:31
Speaker 2: they're very curious. So when I did, I didn't speak
23:35
Speaker 2: what we thought to having zimmer for a while on
23:37
Speaker 2: social media, and then I started getting a following. So
23:40
Speaker 2: now I've got twenty thousand people. When I am starting
23:43
Speaker 2: to post flogs and I mentioned the summer, people are
23:46
Speaker 2: starting to comment like, well, what's that? Like what happens?
23:49
Speaker 2: And then that's when I ended up telling the story
23:51
Speaker 2: of what has happened, and it got a lot of
23:55
Speaker 2: attention and a lot of people messaging me saying, you know,
23:58
Speaker 2: they feel see because their babies a storma and like
24:01
Speaker 2: other medical moms in the same situation after you like
24:04
Speaker 2: you don't get enough health. And that's another good thing.
24:08
Speaker 2: That are a lot of social media for making other
24:11
Speaker 2: people in my situation feel scene.
24:15
Speaker 1: Yeah, that that is so so important. I'm glad you
24:18
Speaker 1: brought that up as well, because it's it can be
24:22
Speaker 1: especially if you have a child, or you have a
24:25
Speaker 1: condition yourself, a child with a condition that is really rare.
24:29
Speaker 1: You know, you pipe in hirsprungs or you mentioned the
24:32
Speaker 1: word hirshprungs just to ninety percent of people and they'll
24:37
Speaker 1: go what I mean, even healthcares for bedshiels, you know,
24:41
Speaker 1: even you know the amount of GPS that I've end
24:44
Speaker 1: up having to explain. Oh yeah, like conditioning.
24:47
Speaker 2: But when the baby was poorly last week, we had
24:49
Speaker 2: to get an ambulance and there was so two ambulance
24:53
Speaker 2: men and then students with them. Not one of them
24:58
Speaker 2: knew what it was. And he was sitting there on
25:00
Speaker 2: the iPad on the way to the hospital, like have
25:01
Speaker 2: you said? And it's so interesting that he said, you're
25:04
Speaker 2: laying sat on me on this job every single day.
25:06
Speaker 2: He said that he'd never heard that. And I think
25:08
Speaker 2: he'd been fifty years, he'd been doing four he was
25:10
Speaker 2: about he was now he was forty years. Maybe he
25:14
Speaker 2: started when he was about twenty. He was quite older man.
25:17
Speaker 2: And he says, all my years, Ship, I've never heard
25:20
Speaker 2: of him relace.
25:22
Speaker 1: That's that's surprising, especially being so close to older Hay. Yeah,
25:26
Speaker 1: that's yeah, that's peculiar.
25:29
Speaker 2: And because I was explaining too many says it sounds
25:31
Speaker 2: from the leadership, But I've never never heard he's always sad.
25:34
Speaker 2: We've dealt with people with stones, but never with his funks.
25:38
Speaker 1: No, And that that's the thing when you said about
25:41
Speaker 1: community about because you can feel a bit isolated, Yeah, definitely.
25:48
Speaker 1: You know, you have a child with this condition and
25:51
Speaker 1: nobody's really heard of it, and friends have never heard
25:54
Speaker 1: of it. Yeah, even wider family, you've never heard of it.
25:58
Speaker 1: And you spend you feel like you're spending the entire
26:00
Speaker 1: time having to explainin yeah, well it's this, and it's that,
26:04
Speaker 1: and they have a stormer.
26:05
Speaker 2: And don't constantly google, And I feel like I am
26:08
Speaker 2: constantly googling. If I want to give a certain new tweet,
26:11
Speaker 2: I won't google at alls. I feel like I do
26:14
Speaker 2: is research research constantly because I'm so Partata needs to
26:17
Speaker 2: give a certain that she is not allowed, and then
26:20
Speaker 2: if we do, I'm like, do we need to go
26:22
Speaker 2: to the hospital. So I'm always like on edge, and
26:24
Speaker 2: then I don't like leaving it with other people in
26:26
Speaker 2: case they give a certain that she's not allowed. You're
26:29
Speaker 2: just always on edge and go and new places like
26:31
Speaker 2: down to the swimming bats is a big anxiety to me,
26:34
Speaker 2: and I won't really go because I feel like a
26:37
Speaker 2: people going to be looking like because she's got a
26:38
Speaker 2: sham with agents, feel comfortable with the being in the
26:40
Speaker 2: pool with them. You know, just things like that. But
26:43
Speaker 2: you just never know what people people are thinking.
26:47
Speaker 1: Yeah, I think as well. It is difficult because we always,
26:52
Speaker 1: I think all of us kind of we always try
26:55
Speaker 1: and second guess what other people are thinking, when chances
26:59
Speaker 1: are most of the time they're just worried about what
27:01
Speaker 1: they're doing. Yeah.
27:03
Speaker 2: Yeah, that's one of my big things. I was bigger
27:06
Speaker 2: as a thinker.
27:07
Speaker 1: Yeah. Yeah, but but that again, going back to your
27:11
Speaker 1: original point about anxiety and medical anxiety and medical trauma,
27:17
Speaker 1: I think that's again speaking to so many people who
27:22
Speaker 1: go through the diagnosis of Hirschpring's. They your story is
27:30
Speaker 1: someone that I have heard, you know before, where people
27:34
Speaker 1: they do it's sort of a and I don't think
27:38
Speaker 1: it's a too strong a word PTSD.
27:42
Speaker 2: Oh definitely. So I actually got diagnosed with PTSD not
27:46
Speaker 2: long after because I was having nightmares and I couldn't settle,
27:51
Speaker 2: and then eventually only last year. So she was actually
27:54
Speaker 2: one at this point it turns into panic disorder, and
27:58
Speaker 2: then the panic disorder into agaphobia. And I didn't leave
28:02
Speaker 2: the house for two three months. I couldn't even walk
28:08
Speaker 2: to the top of the sheet. And that was solely
28:09
Speaker 2: because I was so worried that either she'd have a
28:14
Speaker 2: bartel obstruction and pass away, or that adds collapse and
28:16
Speaker 2: pass away, and then who's gonna look after they with
28:19
Speaker 2: their stoma? Do you know what I mean? So it
28:22
Speaker 2: was all help belie that kicks it off, and it
28:25
Speaker 2: was PTSD panet to order everything. I did eventually get
28:29
Speaker 2: past it, but go like down to hospitals or when
28:32
Speaker 2: she gets poorly, I will do anyth instead of aid
28:34
Speaker 2: going to the hospital because it triggers me that bad.
28:37
Speaker 2: I will only go if I know that we really
28:39
Speaker 2: need to. And I don't think there's any help at all.
28:45
Speaker 2: Well for new moms, I don't think there's any help
28:47
Speaker 2: at all for the anxiety you get after give them birth.
28:50
Speaker 2: But if he the medical mom and you've just given
28:51
Speaker 2: birth to the baby with a disease like that, there's
28:56
Speaker 2: no support at all, Especially like when we were in
28:59
Speaker 2: the hospital. I feel like they should offer her a
29:02
Speaker 2: counselor for if your baby's just nearly lost, the liesman
29:07
Speaker 2: has had to have all these procedures and stuff, and
29:09
Speaker 2: it's a new ball baby and you're a new more.
29:12
Speaker 2: I think they should be a counselor in the hospital
29:15
Speaker 2: lacking go and spends an hour with these ones and
29:17
Speaker 2: speak to them and see how they feeling and see
29:18
Speaker 2: if they can help her anyway, because put on a
29:20
Speaker 2: mum in that situation after just giving bath and then
29:25
Speaker 2: all of this happening, For one, you can't think street.
29:28
Speaker 2: For two, you're so scared, you're literally can't function, but
29:33
Speaker 2: you try. And you don't want to sit there crying
29:36
Speaker 2: in a hospital room when the nurse is coming in
29:38
Speaker 2: then out, because you don't want people to keep saying
29:40
Speaker 2: it you're okay, you okay, because that triggers you. Worte. Yeah,
29:43
Speaker 2: And I used to go into the bathroom and cry
29:46
Speaker 2: in all to right because I used to think, I
29:48
Speaker 2: don't want people coming in then ouse and asking if
29:50
Speaker 2: I'm will cry when she's literally lying on a hospital bed,
29:53
Speaker 2: do you know what I mean? Just sad stagey, she's
29:55
Speaker 2: a day old. Yeah, it was just trensous. But don't
29:59
Speaker 2: they get over and now I can't just go out
30:01
Speaker 2: freely and stuff like that, and that was because of therapy.
30:04
Speaker 2: I just ended up needing therapy for it.
30:06
Speaker 1: Yeah, I think I think you're right, and I advocate
30:10
Speaker 1: for this a lot. Where as a mother, you I
30:16
Speaker 1: presume you are then thinking I just want my child
30:19
Speaker 1: to be okay, But actually, yeah, who's taking care of you?
30:23
Speaker 2: That's the thing. Yeah, And I feel like this might
30:26
Speaker 2: sound a little bit selfish to say, but I know
30:27
Speaker 2: that month of related. We don't care saying it. When
30:30
Speaker 2: we was in the hospital and the baby's poorly, everyone
30:33
Speaker 2: coming to see the baby and forgetting about me even
30:36
Speaker 2: though I'm in a wheelchair. I'm in severe agony and
30:39
Speaker 2: I'm draum tast thinking that I've just nearly lost me
30:41
Speaker 2: new one baby, and I felt like no one really
30:45
Speaker 2: But at the same time, I was glad that everyone's
30:47
Speaker 2: cared about the baby. But then at the same time,
30:49
Speaker 2: who was no one was looking after me? I was
30:51
Speaker 2: I was looking after himself when I went to a
30:53
Speaker 2: very good job of it, because I was, you know,
30:55
Speaker 2: traum tist.
30:57
Speaker 1: Yeah, And I think I had up to somebody about
31:00
Speaker 1: this a couple of weeks ago where they said, you know,
31:06
Speaker 1: in order for me to look after my child, I
31:09
Speaker 1: need to make sure that I'm okay. And then it
31:14
Speaker 1: is that you know, who's going to be making sure
31:16
Speaker 1: that I'm all right? You know? Yeah? And I think
31:19
Speaker 1: that's it's something that is It's like you said, you know,
31:23
Speaker 1: we no immediate support offered to you, and you've gone
31:28
Speaker 1: through a pretty i mean very hectic traumatic experience and
31:41
Speaker 1: it's then going, right, okay, how do we support everybody
31:45
Speaker 1: because obviously your child needs sorts of support, but you
31:48
Speaker 1: need that support as well.
31:49
Speaker 2: Exactly, And I do think that they should even a volunteer.
31:53
Speaker 2: I'd love to do it, but then I feel like,
31:55
Speaker 2: well people take it serious? Is you just go to
31:57
Speaker 2: the hospital and if a one with a new born
31:59
Speaker 2: baby has just happened, someone could just go in and say,
32:04
Speaker 2: you know, I mean if you want to speak for
32:05
Speaker 2: an hour, and if you then then if the person
32:09
Speaker 2: who's helping them with the counselor and feels like you
32:12
Speaker 2: need fair the help, then maybe you can refer them
32:14
Speaker 2: for that. And I think that should be done earlier
32:16
Speaker 2: rather than later, and then it wouldn't have vented up
32:18
Speaker 2: like he did with akaphobia. If I would have got
32:20
Speaker 2: the help that I needs at the time. The stuff
32:24
Speaker 2: that happens to me a year later wouldn't have happened
32:26
Speaker 2: because I would have been resolved in their issues already
32:29
Speaker 2: intead of letting them brew up and it all hit
32:32
Speaker 2: me at once.
32:33
Speaker 1: Yeah, definitely. And I think I think you'd be you'd
32:37
Speaker 1: be a perfect person to go a lot.
32:39
Speaker 2: I'm a good talker, but you've been through it, you
32:43
Speaker 2: know you can relate.
32:45
Speaker 1: Again, It's it's one thing hearing it from somebody who
32:50
Speaker 1: you know might be qualified and might be able to
32:52
Speaker 1: talk through various symptoms and whatever is that you're you're experiencing.
32:57
Speaker 1: But it's entirely different when you talk to somebody who
33:01
Speaker 1: has been through something similar. Yeah, because they know. And
33:05
Speaker 1: you can't replicate that, No, definitely not. You can't. You
33:09
Speaker 1: can't replicate the all of the feelings. It's like we
33:14
Speaker 1: said before, all of the feelings that you went through,
33:17
Speaker 1: some of which obviously you'd blocked off and then come
33:21
Speaker 1: back in yeah, yeah, and.
33:23
Speaker 2: Not exactly what it was. That's why now if I've
33:25
Speaker 2: got if I'm upset able, and I'll let yourself feel
33:28
Speaker 2: it in that moment instead of it coming back around
33:30
Speaker 2: and biting me because when it comes back around again,
33:33
Speaker 2: it's doubled up because you've left it for that long.
33:36
Speaker 2: And it's strange because I know if I would have
33:41
Speaker 2: asked for help at that's a I wouldn't have the
33:45
Speaker 2: anxiety that I've got now, which is rootless.
33:48
Speaker 1: Yeah. But then the obviously the flip side of that
33:53
Speaker 1: is that you're going through anything and everything and worrying
33:57
Speaker 1: entirely about your child. So you probably didn't have, as
34:01
Speaker 1: you said, you know, had everything going on, a very
34:06
Speaker 1: blurry memory of everything, then didn't think, oh, actually maybe
34:10
Speaker 1: I need to possibly have some help, because not straight
34:14
Speaker 1: at out of time, so it's it's impossible to be
34:16
Speaker 1: then to go, actually I might need to do this,
34:19
Speaker 1: that and the other. That's where it's kind of you
34:21
Speaker 1: need that other person, don't you. I guess someone else
34:23
Speaker 1: to kind of.
34:24
Speaker 2: Get Yeah, definitely, And especially when you get to charge.
34:26
Speaker 2: That's a whole of the ball game, getting discharged and
34:29
Speaker 2: like sent home with all this information and all these
34:32
Speaker 2: medical equipment and and and I remember getting home and
34:36
Speaker 2: I was just like, oh my god, like there's no money,
34:39
Speaker 2: help me know, there's no naises, there's like I need
34:41
Speaker 2: to be on the ball. Yeah, And I remember the
34:43
Speaker 2: first few units of struggled a lot because the bag
34:45
Speaker 2: kept lead. I couldn't understand why, and it's because I
34:48
Speaker 2: was so tired of wait, like putting the stickers around
34:50
Speaker 2: the back and it was just exploding everywhere, and we
34:52
Speaker 2: were going through clothes like there was no tomorrow blankets.
34:55
Speaker 2: It was a nightmare obviously on a hoa prone now
34:58
Speaker 2: like I had to do it with my eyes closed
34:59
Speaker 2: and have no issues. But at that time I remember
35:03
Speaker 2: the card because I think I haven't doing it wrong.
35:05
Speaker 2: I'm here and we obviously it doesn't hear, it doesn't hear,
35:09
Speaker 2: but I was so convinced that I was here.
35:12
Speaker 1: Yeah. Yeah, But it's interesting to say that you've become
35:16
Speaker 1: you know, it's just second nature to you now. It's
35:19
Speaker 1: amazing that you can become qualified in yeah, something that
35:22
Speaker 1: you know, you haven't known for many, many years, and
35:24
Speaker 1: then suddenly because you effectively you have to.
35:27
Speaker 2: Yeah, that you've got new trees, which is absolutely a
35:30
Speaker 2: good thing, because the truths how resilient moms are. That
35:32
Speaker 2: is you if you've given so on and you've never
35:36
Speaker 2: done it before, and you know you've got to do
35:38
Speaker 2: that to your child. You're just you just do it.
35:42
Speaker 1: Yeah. Absolutely. There was one other part that you mentioned
35:45
Speaker 1: as well, when it was just before the midwife came
35:50
Speaker 1: around and you knew something was you knew something was up. Yeah,
35:54
Speaker 1: even though everything had been ticked off and you've been
35:57
Speaker 1: sent home and all of this stuff. And there's one
36:00
Speaker 1: thing I'll always believe in advocate.
36:03
Speaker 2: For mother's intuition.
36:06
Speaker 1: Exactly exactly what I was going to say, but mother's
36:11
Speaker 1: inter into intuition, if I can say it properly, is
36:16
Speaker 1: is just something that I can't explain. I don't know
36:19
Speaker 1: if anybody else can explain it better than I can.
36:21
Speaker 1: But you know, it's something that I presume you just
36:25
Speaker 1: you just feel.
36:27
Speaker 2: You get like it's it's like you get instinct in
36:30
Speaker 2: your bossy. So obviously, my eldest daughter, she's been to
36:33
Speaker 2: hold today once in a life, and that was because
36:34
Speaker 2: she's had the absess she's never ill, she never has
36:37
Speaker 2: any else problems, So for all I knew that was normal.
36:40
Speaker 2: But it was just I had this thing in the
36:42
Speaker 2: back of me, brilliant and it was like her voice,
36:44
Speaker 2: and it was just saying sort and drunk, sort and drunk.
36:47
Speaker 2: But then doesn't know the voice trying to convince yourself, no,
36:50
Speaker 2: you'll being parentally, No, you'll be in parently. But I
36:52
Speaker 2: knew for the simple fact she weren't even waiting up
36:55
Speaker 2: for the bottle. She had slept all night without a bottle.
36:58
Speaker 2: And I'm like that not normal, Like she surely she
37:02
Speaker 2: would wake up for a bottle now. But I feel
37:04
Speaker 2: like obviously when you'd have a baby, like intertime with
37:07
Speaker 2: this baby anyway, you've just been inside just a nine months,
37:10
Speaker 2: like you know, it's it's so hard to explain, but
37:13
Speaker 2: you just know. Every time I've had a feeling about
37:16
Speaker 2: ston to do with my kids, have never been wrong. Yes,
37:20
Speaker 2: any time she's been poorly since she's had the summer,
37:23
Speaker 2: everyone's like, oh, she might not be that bad. And
37:25
Speaker 2: every time we then stop up in hospital like I've
37:27
Speaker 2: said we would, and we've ended up staying him for
37:28
Speaker 2: the week at a time because I knew, and I
37:32
Speaker 2: am not on the ball with it. Now, I can
37:34
Speaker 2: notice three days before she actually gets poorlye that she's
37:38
Speaker 2: going to be poorly despite how she acts and say
37:42
Speaker 2: sayin little things she does.
37:45
Speaker 1: Wow, I mean that's yeah, that goes far and beyond
37:48
Speaker 1: father's instinct. That's kind of stuff.
37:51
Speaker 2: Yeah, I think I am a little bit telepath, but.
37:55
Speaker 1: That's but it is it's something that that I will
37:58
Speaker 1: always advocate for. You know. It happened to me thirty
38:01
Speaker 1: odd years ago, you know, and if my mom hadn't
38:05
Speaker 1: had a brilliant mother's instinct, then I wouldn't be here.
38:09
Speaker 1: So it's something that you can't explain, or certainly I can't,
38:15
Speaker 1: but it is that that feeling have you just you
38:19
Speaker 1: just know something wrong. And it's interesting, he said, You know,
38:22
Speaker 1: every time, I just know at the time I've been right.
38:28
Speaker 2: And that's why when you do go to the hospital
38:30
Speaker 2: now and obviously most of the doctors there do no
38:34
Speaker 2: dala and no bog dara situation. But like when we
38:37
Speaker 2: get new doctors or left new nurses, when we go
38:39
Speaker 2: to any I see to them, I know there's sort
38:41
Speaker 2: and wrong, and they say, we always trust mother's intuition,
38:45
Speaker 2: especially if she's got a medical background. And the mom
38:48
Speaker 2: says sort and wrong, she said, we don't even maybe
38:50
Speaker 2: listen to other doctors. We are listening to them mob.
38:52
Speaker 2: And if the mom says there's sort and wrong now
38:54
Speaker 2: and towns all to ten, there's sort and wrong. And
38:56
Speaker 2: every time I've said it there was something wrong.
38:58
Speaker 1: Yeah, I mean I'd probably go even further and probably
39:01
Speaker 1: say ninety nine times out of one hundred.
39:03
Speaker 2: Yeah, honestly, every single time. I remember this when she
39:06
Speaker 2: did have to get a ball removed the second families
39:09
Speaker 2: did the poul flu that was the second operation. After
39:12
Speaker 2: that operation, she was acting strange and I said to
39:16
Speaker 2: them the shot and wrong there, and I shouted all
39:19
Speaker 2: the nases in and a few minutes strators she went
39:21
Speaker 2: like floppy and turns out she had sepsis and needed
39:24
Speaker 2: a blood blood transfusion. But it was just off me
39:27
Speaker 2: looking at it, off the off chance and not just
39:30
Speaker 2: that something was wrong. And it was because she was
39:32
Speaker 2: staying into spacer and I shouted all the nass and
39:34
Speaker 2: I said, something's wrong there, and he said no, I
39:37
Speaker 2: think she's just you know, God tolling after surgery. And
39:40
Speaker 2: I said the shot and wrong. And soon they say
39:42
Speaker 2: she was like unresponsive, but all the SATs were normal.
39:44
Speaker 2: It was strange, but she was like unresponsive and went
39:47
Speaker 2: today and she needs the blood transfusion, and it was
39:49
Speaker 2: like I just knew.
39:51
Speaker 1: Wow, that's I mean, has gone through intracolitis and stepsis.
39:57
Speaker 2: So two of the he had SEPs about two. No, yeah, wow,
40:01
Speaker 2: I think I think he said. One she gets sept
40:04
Speaker 2: she can be more prone to get it again, especially
40:07
Speaker 2: of central crisis. So now every time we go go
40:11
Speaker 2: and she gets SEPTI squirdied because she's added too many times.
40:14
Speaker 1: Yeah. No, that makes sense that you are going to
40:16
Speaker 1: be more more poor Yea than previous. But yeah, I
40:22
Speaker 1: mean so she has had all all of the I
40:26
Speaker 1: guess more well known associaded conditions with hersh rungs. Uh. Yeah,
40:31
Speaker 1: it's just bad luck that you've ended up catching them all.
40:34
Speaker 1: I guess now terrible that is. That is We've just
40:38
Speaker 1: sort of got five or ten minutes here. In terms
40:41
Speaker 1: of the future for Dalla, mm hmm. I know you
40:44
Speaker 1: mentioned she has stonema and will keep that stomach. Yeah,
40:48
Speaker 1: what do you see her sort of future looking like?
40:52
Speaker 1: Medically and non medically.
40:55
Speaker 2: So medically, I have basically said, if when she gets old,
40:59
Speaker 2: does she decided she wants to do the reversal, she
41:02
Speaker 2: can do that completely. She can do that, and I
41:05
Speaker 2: will obviously I will helping him whatever. But I wanted
41:08
Speaker 2: to be able to decide that on a and with
41:10
Speaker 2: now and the pros and the cons of it. I
41:11
Speaker 2: don't want to put us through it now and put
41:13
Speaker 2: it in a way situation than she's already been in.
41:15
Speaker 2: She's been through a lot. I don't want to put
41:17
Speaker 2: us through anything else. So if when she gets old
41:21
Speaker 2: and she decided she wants to do it, that's perfectly fine.
41:23
Speaker 2: And then she decided she wants to put back in
41:25
Speaker 2: that fant she can do all that, But non medically,
41:29
Speaker 2: I haven't needed to hold that far ahead. I'm only
41:31
Speaker 2: thinking about next weeks year. I'm like, we am moving
41:34
Speaker 2: like one hundred miles an hour and I'm trying to
41:36
Speaker 2: get through the day. Never man thinking about the future.
41:39
Speaker 2: But I just know she's just like the funniest cause
41:43
Speaker 2: so a comedian probably have to just imagine as a
41:45
Speaker 2: way of comedian. But I want to raise awareness about
41:51
Speaker 2: what she's got and like I want, I wanted to
41:55
Speaker 2: be known as like this resilient kid who's been through
41:58
Speaker 2: the way stuff in the world and has come out
42:01
Speaker 2: ten times better for people who are scared with in
42:04
Speaker 2: this situation to look up to someone and see she's
42:07
Speaker 2: been through it and she's fan I do with that
42:09
Speaker 2: stomach bibon TikTok. Yes that I look up to here
42:13
Speaker 2: like that, So I do you want to raise awareness
42:15
Speaker 2: and help with the people in the same situation because
42:19
Speaker 2: of here.
42:19
Speaker 1: You do a fantastic job with that. I mean, is
42:21
Speaker 1: how I how I came across you in the first sense, TikTok.
42:25
Speaker 1: I think you do a great job in many I'm
42:28
Speaker 1: raising awareness because again, as we said, it's not it's
42:32
Speaker 1: not something that's talked about as much.
42:34
Speaker 2: No, definitely not.
42:35
Speaker 1: And it's it's difficult for me to say whether it
42:38
Speaker 1: is talked about more or it isn't, because I'm in
42:41
Speaker 1: that bubble every day, so and I guess you're sort
42:44
Speaker 1: of in that bubble as well. So where we just
42:48
Speaker 1: sort of come across it because it's what we search for,
42:51
Speaker 1: it's what we who we follow and all of that stuff.
42:55
Speaker 1: But it is it is about sort of raising that
42:59
Speaker 1: awareness and also not being afraid of it. I think,
43:04
Speaker 1: as we said before with Stonmas, people can kind of
43:06
Speaker 1: get all stoma.
43:07
Speaker 2: Don't Yeah, you don't want to talk about it or
43:09
Speaker 2: do you think it's embarrassing or because it anything to
43:13
Speaker 2: do a bodily fluid people's show, weir as out by
43:16
Speaker 2: and it's like, come on, we all have bodily fluid.
43:19
Speaker 2: How do you think you survi have Basically, if I'm
43:22
Speaker 2: telling you that is my daughter couldn't go to the toilet,
43:24
Speaker 2: she she would have lost their life. How are people
43:28
Speaker 2: not understanding how important bodily fluids are, Like it's a
43:32
Speaker 2: part of the body's system of regulating and functioning, you
43:37
Speaker 2: know what I mean? But people, I think people just
43:40
Speaker 2: shy away from its empty.
43:43
Speaker 3: Yeah.
43:43
Speaker 1: Absolutely, But then the more we talk about it, the
43:46
Speaker 1: more normal it becomes. Exactly, And also it might it
43:49
Speaker 1: might save a life. You know, people might be scrolling
43:52
Speaker 1: across and going, oh, actually this person said this, and
43:55
Speaker 1: oh I have that and.
43:56
Speaker 2: Exactly, or like someone seem you have a near baby
43:59
Speaker 2: had just been born and vomit and green stuff and
44:01
Speaker 2: they did believe that the doctors when we said that
44:03
Speaker 2: it's fluid from the woobah. But then they see my
44:07
Speaker 2: zio and tested against that and it was and it
44:09
Speaker 2: was right. You know, it could it could save a
44:12
Speaker 2: baby's life.
44:13
Speaker 1: Yeah, you've already already saved a life, you know, just
44:16
Speaker 1: and it sounds it sounds silly to go, oh, well
44:19
Speaker 1: I did a TikTok and say the life.
44:20
Speaker 2: But but you do you genuinely can. Yeah, and that's
44:23
Speaker 2: why I take tiktoks to Sharious. Now. I never used
44:26
Speaker 2: to take it Sarious. I used to just think it
44:28
Speaker 2: was just like, you know, a little app. And now
44:30
Speaker 2: I've got twenty thousand followers on there, and I've met
44:33
Speaker 2: some amazing people. I've got some amazing opportunities and like
44:35
Speaker 2: things like this I would never ever have done. But
44:39
Speaker 2: all the stems from what happened to her when she
44:41
Speaker 2: was born, because it gives me the confidence to do
44:44
Speaker 2: everything that I do now.
44:46
Speaker 1: Yeah, Yeah, And that's that's a fantastic sentiment to finish
44:49
Speaker 1: on because you said you through adversity has come all
44:55
Speaker 1: of this strength, that the and all of this confidence
44:59
Speaker 1: and all of these things you know, you wouldn't have
45:02
Speaker 1: thought you a few years ago you'd be expert stoma
45:06
Speaker 1: changing and expert hirs sprugs and all of these things
45:09
Speaker 1: that you've you've you've acquired over the last few years
45:13
Speaker 1: has been absolutely amazing and all powerty for that. That's fantastic.
45:17
Speaker 2: Thank you.
45:18
Speaker 1: Just as we as we finish, where can people find
45:23
Speaker 1: you online?
45:24
Speaker 2: So I don't really use Instacam. I only use TikTok
45:28
Speaker 2: and my TikTok name is Libby gailmot Now that's what
45:32
Speaker 2: everyone calls me, But I think my TikTok name is
45:35
Speaker 2: actually just El Darcy, which is Libby's name, and then
45:38
Speaker 2: Darcy is the elder store of that I mean eight
45:41
Speaker 2: years ago maybe, But my TikTok name is Libby Gailmore fantastic.
45:47
Speaker 1: Well go and have a follow if you want to
45:49
Speaker 1: see lots of sort of. There's some some really good
45:52
Speaker 1: some of Hirshprungs and your story is on there as well.
45:55
Speaker 1: I think it's just a five minute, five minute story
45:57
Speaker 1: on there, but that's really really good to Thank you
46:01
Speaker 1: so so much for coming on it for pleasure to
46:05
Speaker 1: chat to you.
46:06
Speaker 2: Yeah, it's been amazing. Thank you.
46:12
Speaker 1: Thank you for listening to the podcast. Find us on
46:15
Speaker 1: Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes
46:20
Speaker 1: on Spotify by searching Tom's Hirshbrung's podcast