Latest / Tom's Hirschsprung's Podcast / Episode 135 - With Jodie

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Episode 135 - With Jodie · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode one hundred and
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Speaker 1: thirty five of Tom's Hirshbrung's Podcast. I'm delighted to be
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Speaker 1: joined this morning by Jody. Jody, welcome to the podcast.
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Speaker 2: Thank you so much.
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Speaker 1: Thank you for how are we oh not at all? Kids?
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Speaker 1: Talk about your daughter Libby, who, amongst other conditions that
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Speaker 1: we will we will talk about has hirshbruns as well,
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Speaker 1: So we'll talk obviously a little bit aout hirshbruns, but
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Speaker 1: lots of other associated conditions as well.
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Speaker 2: Would you like to take us back to the beginning
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Speaker 2: with Libby? Yeah, of course, Bersie, thank you for dovis podcast.
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Speaker 2: It's amazing that you're raising and awareness of this and yeah,
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Speaker 2: just incredible episode number to one hundred and thirty five.
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Speaker 1: Yeah, it's for court a while.
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Speaker 2: That's amazing, amazing. So our story Busy started with Libyy
1:36
Speaker 2: during my twelve week scan. We have two other boys
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Speaker 2: who are five and four, totally healthy. So I go
1:44
Speaker 2: for my twelve week scan. I think, I know the drill.
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Speaker 2: You go, you have your scan, all all lovely. We
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Speaker 2: go for our scan and the midwife scan me is
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Speaker 2: just taking a very long, long, long time, and I
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Speaker 2: sort of started to pick up that maybe there was
2:01
Speaker 2: something that wasn't quite right, and she said, I'm going
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Speaker 2: to go get in another midwife to check. And at
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Speaker 2: that point I saw my husband just like go white.
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Speaker 2: And I was thinking, like gosh, what's going on here
2:10
Speaker 2: because I was a little bit naive and to what
2:13
Speaker 2: was going on. And then basically the midwife says to us,
2:17
Speaker 2: mister Missuthshaff, could you please follow me this way? She
2:21
Speaker 2: leads us through the hospital to this room and this
2:24
Speaker 2: whole thing with a bit of a blab. But what
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Speaker 2: I do remember is there was a poster on the
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Speaker 2: wall of this room saying, sometimes scams don't go away.
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Speaker 2: We're here to help you. And that was my first
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Speaker 2: instant of Okay, I know how this works. I've got
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Speaker 2: two boys, I've done this before, Like, what's what's going
2:40
Speaker 2: on here? And a woman comes in. She sort of
2:42
Speaker 2: like tilts her head to the side and says, Hi,
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Speaker 2: I'm so and so and I'm going to be your
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Speaker 2: counsel left to do with this pregnancy. And actually I'm
2:50
Speaker 2: actually a counselor aside from this, and I was thinking
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Speaker 2: I need a counsel, that I am a counselor what
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Speaker 2: do you mean on my councler for what's going on?
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Speaker 2: I basically began to explain to me that there's a
3:00
Speaker 2: number called the NT, the nucleal trance, and that basically
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Speaker 2: you want their number to people low three point five
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Speaker 2: on the scan, and our number was three point nine,
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Speaker 2: and it's basically an indicator for certain heart conditions, certain
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Speaker 2: chromosome abnormalities, and certain genetic complications also. So at that point,
3:20
Speaker 2: basically we're put on more of a high risk pregnancy.
3:22
Speaker 2: And then fast forward a little bit, we're having another
3:25
Speaker 2: scan and they told us that they found a hole
3:28
Speaker 2: in Libby's heart, at which point Great Woman Street were
3:31
Speaker 2: under uh and Great Woman Street came to meet with
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Speaker 2: us and they were a very matter of fact about
3:36
Speaker 2: it that she's got hot in her heart, she was
3:38
Speaker 2: gonna be gone and then we're going to fix her
3:40
Speaker 2: whole and she's going to live a perfectly normal, happy life.
3:44
Speaker 2: So that was sort of the energy that I was
3:45
Speaker 2: sort of going into my birth with. And then she
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Speaker 2: we have her, and that's all normal and fine. But
3:53
Speaker 2: after birth, she basically wasn't really able to eat. She
3:59
Speaker 2: wasn't eating tall, and her stomach was getting very very descended,
4:05
Speaker 2: and she wasn't she A child needs to pooh between
4:09
Speaker 2: the first seventy two hours basically, and Libby hadn't done that,
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Speaker 2: and again her stomach was just getting bigger and bigger
4:16
Speaker 2: and bigger. So from there they transferred us into the
4:19
Speaker 2: ICU at UH and we were there for only a
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Speaker 2: few hours before they'd said you need to go to
4:23
Speaker 2: Greatlemond Street because she's getting quite sick basically, And so
4:28
Speaker 2: we go to Great Ormond Street and they put us
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Speaker 2: on like a sturge aord and immediately they do these
4:35
Speaker 2: things called washouts. Can I don't know how much detail
4:37
Speaker 2: you wanted to be idea, but much does you like?
4:42
Speaker 2: The child basically do things called washouts, which is basically
4:44
Speaker 2: trying to remove the maconium that's stuck inside of her
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Speaker 2: to try and remove it, but that wasn't successful. So
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Speaker 2: by day three, when she was three days old, they
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Speaker 2: said to her, They said to us that she needs
4:57
Speaker 2: to be fitted with a stoma because that's going to
5:01
Speaker 2: save her life. And I said, kay. And they come
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Speaker 2: and they tell you all the risks of anesthetic and
5:11
Speaker 2: they're like verbally explaining like the risk that I mean,
5:15
Speaker 2: if you open up a packet paraity tomol, you've got
5:17
Speaker 2: very scary risk assated with that. Also, this was like
5:20
Speaker 2: quite major surgery on a three day old baby. And
5:24
Speaker 2: they finish off these risks and said the last one
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Speaker 2: is we have to tell you that this spouad end
5:28
Speaker 2: up in like her not making it, to which point
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Speaker 2: I said, but do we like, no, no, do we
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Speaker 2: have a choice, And they said no, like, she needs
5:37
Speaker 2: this because she is not able to pass Harmerconi and
5:41
Speaker 2: there's clearly some blockage going on in her digestive system,
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Speaker 2: so we have to fit have a She goes with
5:49
Speaker 2: the surgery and it is the most nerve wracking experience
5:53
Speaker 2: I've probably ever had, and there's been quite a few
5:56
Speaker 2: of those experiences in the last eight months. And that
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Speaker 2: you hand over your baby who's three days old, and
6:04
Speaker 2: I just remember saying to them, just please take care
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Speaker 2: of her, like, please look after her. And she comes
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Speaker 2: up with surgery is like quite a few hours later,
6:15
Speaker 2: and thank goodness, she's doing well. And then the next
6:18
Speaker 2: hurdle comes that the stonewer is not working, but two
6:22
Speaker 2: to try and in her nose, to try and bring
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Speaker 2: out some of the sort of the stuff that's stuck
6:27
Speaker 2: inside of her out of her nose. They're syringing it
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Speaker 2: out of her nose because it's still not coming out
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Speaker 2: on the stoma, and I'm googling how long shall it
6:35
Speaker 2: take for a storma to work? And they're telling me, oh, yeah,
6:39
Speaker 2: we have a bit of time. We can wait hopefully
6:40
Speaker 2: it will work. But in that time and it still
6:43
Speaker 2: wasn't working. And a week went past where it wasn't working.
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Speaker 2: And one of the hardest past this experience was actually
6:51
Speaker 2: we couldn't constantly link between being at with Liby at
6:55
Speaker 2: the hospital and being home with our boys to try
6:57
Speaker 2: and make their life as normal as possible. And yeah,
7:03
Speaker 2: so one of us would be there till very late
7:04
Speaker 2: and then one of uso go early in the morning.
7:06
Speaker 2: Every morning in that week we would come in and
7:08
Speaker 2: we'd say, isn't working, and like the look on their face,
7:10
Speaker 2: they'd say, no, it's not working yet, but let's just
7:12
Speaker 2: give it another day. And then they got to the
7:14
Speaker 2: point where they said, today, if it doesn't start working,
7:19
Speaker 2: we're going to have to go back inside with another
7:21
Speaker 2: major surgery to see why it's not working. Maybe there's
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Speaker 2: a blockage somewhere. Another thing they did in that week
7:28
Speaker 2: is they put some contrast through her through a line
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Speaker 2: to be able to see through her testine if there
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Speaker 2: was a blockage and to see maybe that was why
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Speaker 2: the stoma wasn't working. But there was no blockage, so
7:39
Speaker 2: in a way it would have been a useful thing. Okay,
7:42
Speaker 2: there's a blockage, we can deal with it. But to
7:43
Speaker 2: have no blockage and the stonma still wasn't working with
7:46
Speaker 2: quite a scary reality. And so they got to the
7:49
Speaker 2: day where they said, if it doesn't work by today,
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Speaker 2: then and we're going to need to go back inside
7:53
Speaker 2: because her stomach again is incredibly distended and she wasn't
7:58
Speaker 2: pain basically, And so it happened that that day it
8:04
Speaker 2: started working, and it was an incredible day. We were
8:08
Speaker 2: jumping in great Ormond Street. I felt like I won
8:11
Speaker 2: the lottery. I was like, this is amazing. And it
8:14
Speaker 2: started working and we men basically she was able to
8:19
Speaker 2: start eating solids and or sorry eating and like start
8:22
Speaker 2: to drink some milk, and with very tiny amounts. We
8:27
Speaker 2: started with two milli liters of milk to see if
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Speaker 2: she could handle it and see, like what we wanted
8:31
Speaker 2: is for output to go out rather than up, and
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Speaker 2: so output was going out and slowly went from two
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Speaker 2: milson milks of four eight sixteen twenty and now to
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Speaker 2: arriving on her milk. Sturma is working well. And yeah,
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Speaker 2: that's basically our story of Libbytash Barns be seeds.
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Speaker 1: Wow. I mean, I can't imagine how how you felt,
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Speaker 1: certainly those first few days. And it's it's one subject
9:03
Speaker 1: I talked to a lot of parents about where because
9:06
Speaker 1: Hirsbrung's obviously is the way it is. Everything happens very
9:09
Speaker 1: very early on most of the time, not all the time,
9:14
Speaker 1: but within those first you know, a few days, a
9:19
Speaker 1: few even a couple of weeks, you're handing over your
9:23
Speaker 1: your very small baby that's just been born, and everything
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Speaker 1: that goes with giving birth as well. You've got all
9:28
Speaker 1: of those emotions as well, and then going straight into surgery.
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Speaker 1: I can't imagine. I guess it's just one of those
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Speaker 1: things that you you just kind of have to do
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Speaker 1: and get through. But it must be. Yeah, I can't
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Speaker 1: imagine how tricky that is. I was.
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Speaker 2: I was sort of recovering in the post Labor Award
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Speaker 2: and when they had to move Libby over to great
9:49
Speaker 2: Ormond Street and they said to me, you have to
9:52
Speaker 2: sign here if you want to discharge us, like they said,
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Speaker 2: you can either stay here or even go with your
9:56
Speaker 2: baby to great Ormond Street. And I said, that's not
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Speaker 2: a choice, Like, what do you mean I'm going to
10:01
Speaker 2: sit here and recover, which obviously women have to do
10:03
Speaker 2: after that, But what do you mean I'm going to
10:05
Speaker 2: sit here whilst my baby is being transferred to be
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Speaker 2: Elm Street. I was, of course, I'm gonna go with her.
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Speaker 2: And they said, okay, you have to sign here because
10:12
Speaker 2: this isn't what we would advise. And I said, but
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Speaker 2: this isn't a situation of I'm just gonna sit here
10:16
Speaker 2: and recover and put my feet up. And you're you're
10:21
Speaker 2: I've never experienced anything like this, obviously, but you go
10:25
Speaker 2: into like like like like always that lion mode, like
10:30
Speaker 2: I was like a fierce fighter of my daughter who
10:34
Speaker 2: herself was fighting for her life. But you see this
10:37
Speaker 2: like still tiny, helpless baby, and your own needs are
10:42
Speaker 2: just like they're not even needs anymore because you do that,
10:47
Speaker 2: you do that for your kids. And yes, so that
10:51
Speaker 2: was that was all part of our journey. And then yeah,
10:55
Speaker 2: just sort of the next sort of part that comes
10:57
Speaker 2: with it is that when we were in gring Ormond Street,
11:01
Speaker 2: she also she has this hole in the heart that
11:03
Speaker 2: we know about in her pregnancy her plus also her
11:05
Speaker 2: hash burns the deeds which initially they started saying scary
11:10
Speaker 2: things like maybe it's a stick fibrosis because sissy bibrosis
11:14
Speaker 2: associated with sticky Maconian that can't pass. So there was
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Speaker 2: I kind of described the beginning We're in great onmo
11:21
Speaker 2: the Street the thirty two nights in the beginning, and
11:23
Speaker 2: it was the craziest order post I'd ever been on
11:26
Speaker 2: that with we think it's this diagnosis. I think it's
11:28
Speaker 2: that diagnosis, but I like they were able to confirm
11:33
Speaker 2: that it wants sisted fibrosis and it was long segment hashbugs.
11:36
Speaker 2: So she has a large part of her vowel which
11:40
Speaker 2: is damaged, and when they fitted the stonema, they plan
11:44
Speaker 2: was is that she'll have the stoma, and she will
11:48
Speaker 2: and then at some point have the pull through surgery
11:52
Speaker 2: to basically connect the good part of her bow to
11:55
Speaker 2: the remove the dwreage part of the bow, and they
11:56
Speaker 2: connect the good parts to her bottom. And however, as
12:00
Speaker 2: the story unfolds, and they sort of started coming to
12:05
Speaker 2: us and saying that a child with a heart condition
12:07
Speaker 2: and a bowl condition points to us to maybe there's
12:09
Speaker 2: my bigger going on here, and immediately sort of spent
12:13
Speaker 2: off Libby's bloods for genetic testing. They sent off mine
12:15
Speaker 2: and my husband's, and when she was one mumb old,
12:19
Speaker 2: we found out that she has a very rare genetic
12:21
Speaker 2: syndrome and totally not connected to me or my husband,
12:25
Speaker 2: which is called Mark Wilson syndrome. And the result of that,
12:28
Speaker 2: amongst many things that that means for her life, is
12:33
Speaker 2: that probably herstroma will be there for life. And yeah,
12:39
Speaker 2: so we're Steamer fans for life, probably, but.
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Speaker 1: Definitely, I mean, I can't even imagine what the odds
12:48
Speaker 1: are of having hirsh Bruns. See one in depending on
12:53
Speaker 1: where you read one in five thousand and one in
12:55
Speaker 1: three and a half thousand or whatever. Do you know
12:58
Speaker 1: roughly what the odds of sin synchromis?
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Speaker 2: And it's rare. It's rare. I actually can't remember the
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Speaker 2: figure and I I was very careful about googling stuff
13:10
Speaker 2: in the beginning, and it was, Yeah, there's a lot
13:15
Speaker 2: of scary stuff out there on Google that is not
13:18
Speaker 2: there to give you any kind of like on the
13:21
Speaker 2: ground facts that I was very careful and so I've
13:24
Speaker 2: not massively engaged with sort of figures and things like that.
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Speaker 2: But it's definitely rare. I know one other family in
13:32
Speaker 2: the UK with it so among whilst there are many more,
13:35
Speaker 2: just one that I personally met in eight months. And
13:39
Speaker 2: but it's definitely rare. And when I take the bid
13:42
Speaker 2: to the GP for a common cough, cold whatever, they
13:46
Speaker 2: have no one as I've had of Marl Wolson syndrome,
13:49
Speaker 2: say it's definitely it's definitely rare.
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Speaker 1: And yeah, yeah, so but to have that alongside Hirshprungs
13:58
Speaker 1: as well, I mean has got be I mean one
14:03
Speaker 1: in god knows how many. I mean, that's that's going
14:06
Speaker 1: to be so so rare.
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Speaker 2: Yeah, it's associated with Mark Wilson syndrome is a lot
14:12
Speaker 2: of effect to your organs. So it makes sense that
14:15
Speaker 2: she has her heart condition, makes sense that she has
14:17
Speaker 2: her hashbrums, and it's definitely a more severe form of
14:21
Speaker 2: Mark Wilson syndrome to sort of have both of those things.
14:25
Speaker 2: But truth be told, when we realized that she had
14:28
Speaker 2: her heart condition and her hashburgs and certain facial features,
14:32
Speaker 2: my husband did look up on Chatchybaut what does this
14:35
Speaker 2: look like, and it did say Mark Wilson syndrome. So
14:37
Speaker 2: when we got the phone calls saying that there's melt
14:39
Speaker 2: Wilson syndrome, there was a slight preparedness in chat Gybut
14:44
Speaker 2: although sometimes being the wrong place of tanty for advice
14:47
Speaker 2: in this moment, did kind of prepare us for what
14:50
Speaker 2: was going on here.
14:51
Speaker 1: I think it has its uses in certain circumstances. There's
14:56
Speaker 1: a lot of there's a lot of good stuff that
14:58
Speaker 1: come from AI. There's a lot of things that we
15:00
Speaker 1: could just instead of going through loads and loads of
15:03
Speaker 1: Google pages, we can just ask it and you know,
15:05
Speaker 1: sometimes it's right, sometimes it's not, but it's yeah. I
15:10
Speaker 1: mean that can be that can be quite useful to
15:13
Speaker 1: sort of and I guess to prepare you as well
15:17
Speaker 1: as to what you know, at least, because again I
15:20
Speaker 1: i'd never heard of mel Wilson syndrome before before I
15:25
Speaker 1: spoke to you, and I dare say a lot of
15:28
Speaker 1: people probably haven't either, So at least if you might
15:34
Speaker 1: not know everything about it, at least if you know
15:36
Speaker 1: the name of it. And then when the doctors say
15:38
Speaker 1: that this is this is what happens, well, this is
15:41
Speaker 1: what has happened and been diagnosed, at least again you,
15:45
Speaker 1: I guess it's not come as so much of a shock.
15:48
Speaker 2: Yeah, And I guess just if it's okay to just
15:50
Speaker 2: take this moment just skin a little bit about Mutleason syndrome,
15:53
Speaker 2: because naturally, when I got the diagnosis, i'd say I
15:57
Speaker 2: fell into a very dark, difficult coal to put it,
16:01
Speaker 2: put it politely, and we both like really really really
16:06
Speaker 2: struggle with it because the idea of jim My pregnancy
16:09
Speaker 2: was she's got this hole, she's going to get better
16:10
Speaker 2: and she's going to live a normal life. But Mark
16:13
Speaker 2: Wilson syndrome is there is a deletion on the ZEB
16:16
Speaker 2: two gene, which I don't know much about that, but
16:19
Speaker 2: that is what it is. And it basically causes a
16:23
Speaker 2: effect of everything, basically, and it's crazy how one single
16:26
Speaker 2: gene can have such an impact on her life. So developmentally,
16:31
Speaker 2: children may or may not walk, children may or may
16:34
Speaker 2: not talk. There is a big spectrum. And I've seen
16:39
Speaker 2: some incredible stories of children walking when they're three, four, five,
16:43
Speaker 2: but really some may start walking at seven, eight ten,
16:45
Speaker 2: not at all. And so we fell into this hole
16:50
Speaker 2: and it took us a little while to get out
16:52
Speaker 2: of that, I would say, but when we did manage
16:55
Speaker 2: to sort of see day again, for me and my
17:00
Speaker 2: husband looks at each other and we sort of just
17:01
Speaker 2: said to each other, Okay, this is what's going on.
17:05
Speaker 2: Let's give her the best possible life. Let's give her
17:07
Speaker 2: the best life possible. Because what was quite reassuring is
17:10
Speaker 2: that children with Marvelson syndrome are generally have a very
17:13
Speaker 2: happy demeanor. And that to me, We've both said to
17:16
Speaker 2: each other, as long as she's happy and she's not
17:18
Speaker 2: in pain, that's like all we could wish for at
17:21
Speaker 2: this point. And we started with we started with a
17:25
Speaker 2: speech therapy, we started with physiotherapy. We started with a
17:28
Speaker 2: very specific type of therapy called foisteen therapy. And she
17:32
Speaker 2: is doing really, really amazingly and hitting certain milestones that
17:37
Speaker 2: doctors didn't think that she would hit. And she's doing
17:41
Speaker 2: really really well. And I think that with this whole thing,
17:44
Speaker 2: a huge lesson that I've learned is something and you're
17:48
Speaker 2: already that you can look at the glasses half full,
17:50
Speaker 2: and you can look at the glasses half empty, and
17:53
Speaker 2: I have no one would faught me if I was
17:56
Speaker 2: to look at the glasses being half empty, because there's
17:59
Speaker 2: a lot of things that her meltwalls in syndrome will
18:01
Speaker 2: never be able to do. But she's also breathing and
18:05
Speaker 2: smiling and rolling at five months, and she's eating okay,
18:09
Speaker 2: and there's all these things that you can look at
18:12
Speaker 2: it and be like wow, And every little thing she does,
18:15
Speaker 2: I'm so in awe of her, like so so inspired
18:20
Speaker 2: by her that I'm not saying it makes this whole
18:23
Speaker 2: thing easier, and I'm not saying at all, I've come
18:25
Speaker 2: to a point of acceptance. I don't think you ever
18:28
Speaker 2: do come to a point of acceptance. I think I've
18:30
Speaker 2: come to the point of being amazed by her and
18:34
Speaker 2: also holding pain. You can sort of hold two emotions
18:37
Speaker 2: in one go.
18:39
Speaker 1: Yeah, most definitely, and if because obviously I came across
18:44
Speaker 1: you through Instagram when your Instagram with growing with Libby,
18:47
Speaker 1: which is lovely because there's this so there's so much
18:51
Speaker 1: joy on that page. And I know we've we've spent
18:54
Speaker 1: the last quarter of an hour talking about yeah, this
18:57
Speaker 1: diagnosis and that diagnosis, and this doesn't work in that
19:00
Speaker 1: doesn't work, and the dark condition and the etc. But
19:03
Speaker 1: what I love is that there's so much on there,
19:07
Speaker 1: like you said with rolling, and I mean, she she
19:10
Speaker 1: does an awful lot of smiling, which is so good.
19:12
Speaker 2: It's just the smart and everyone that meets her is like,
19:15
Speaker 2: and I know I'm biased. I'm her mum. I think
19:16
Speaker 2: she's the best thing on this actual planet. But people
19:19
Speaker 2: that meet her that are not as connected to her
19:21
Speaker 2: as I am are like when you hear a diagnosis
19:25
Speaker 2: and you see her in person, it's almost two different things.
19:27
Speaker 2: I know she's still young, and I sort of do
19:29
Speaker 2: have to brace myself for the future. And the truth is,
19:31
Speaker 2: when I do think about the future, that's when the
19:33
Speaker 2: deep dark hole reappears in my life. But actually, when
19:36
Speaker 2: I focus on today and I focus on how well
19:38
Speaker 2: she's doing today and how smiley she is today and
19:40
Speaker 2: how people just fall in love with her when they
19:42
Speaker 2: meet her, and they're so much to be grateful for,
19:45
Speaker 2: and so.
19:46
Speaker 1: Yeah, definitely, And that's the only thing you can do,
19:49
Speaker 1: I guess, is to focus on day by day. I mean,
19:52
Speaker 1: because like we said before, with the condition that's so rare,
19:57
Speaker 1: with not knowing any if if any people who have
20:02
Speaker 1: all of those conditions together, it's not going to be
20:07
Speaker 1: as much research into what happens further down the line. Yes,
20:10
Speaker 1: you can use doctor Google and kind of go right,
20:19
Speaker 1: but that's that.
20:19
Speaker 2: But in a way, it's and people have said this
20:22
Speaker 2: to me, and I do agree with this, the fact
20:23
Speaker 2: that it's not that there's hundreds of thousands of people
20:26
Speaker 2: walking around with exactly them bake up. That she's got music.
20:29
Speaker 2: There is so much room to continue working really hard,
20:32
Speaker 2: continue hope. Like I met a family with mart Wolson
20:36
Speaker 2: syndrome in the beginning and they said to me, Libby
20:38
Speaker 2: was like a month and a half old, and my
20:41
Speaker 2: husband wanted to meet another family of mart Wolfson syndrome,
20:43
Speaker 2: which at the time I thought was a good idea.
20:45
Speaker 2: Turns out was the worst idea ever because this family
20:49
Speaker 2: said to me and that that yes, like people say
20:54
Speaker 2: early intervention, but really it doesn't really work, Like, don't
20:56
Speaker 2: waste your time on physio. I don't want your time.
20:59
Speaker 2: And in my mind I was like, but that's my
21:01
Speaker 2: only lifeline, like in a way, and actually I've seen
21:04
Speaker 2: that it's not true. Like we work so hard with her,
21:07
Speaker 2: and I truly believe that even though there may be
21:13
Speaker 2: limitations on where she can reach, I'm trying not to
21:18
Speaker 2: set limitations on her. And there is such a large
21:20
Speaker 2: spectrum that I hope that she'll be able to fulfill
21:25
Speaker 2: the best libby that she could possibly be.
21:29
Speaker 1: Yeah, but I think when you talk about limitations, I
21:34
Speaker 1: mean I think I think everyone has limitations. You know,
21:38
Speaker 1: I'm never going to be able to run a ten
21:40
Speaker 1: second hundred meter.
21:41
Speaker 2: I know that.
21:43
Speaker 1: I know that I'll never be able to do that.
21:46
Speaker 1: There's at least one of my limitations. And I think
21:49
Speaker 1: We've all got limitations. But it depends how you see it.
21:53
Speaker 1: You know, it's one of those things. Yes, and again
21:58
Speaker 1: not a doctor, not medical advice at any way, but
22:01
Speaker 1: there will be some limitations with everybody. But again, like
22:06
Speaker 1: you say, it's glass half full, glass half empty, do
22:10
Speaker 1: you look at those or not?
22:11
Speaker 2: Yeah? And she brings so much joy to people that
22:14
Speaker 2: she's around, and it's reassuring to me that she'll never
22:20
Speaker 2: know that she's different or never know that like there's
22:22
Speaker 2: something wrong with her. They like it was. They just
22:27
Speaker 2: they're they're like happy. They're happy people that bring joy
22:30
Speaker 2: to other people. And hopefully she will live as pain
22:33
Speaker 2: free life as possible, because that's really that's really what
22:36
Speaker 2: you want. So yeah, and I'm just I'm going to
22:40
Speaker 2: scoop back to Stonmas for a second, if that's okay.
22:43
Speaker 2: I had never had of a stamer before Libby, but
22:47
Speaker 2: I definitely never heard of harshpung cities. And she was
22:51
Speaker 2: ready to be sort of discharged from the hospital, but
22:54
Speaker 2: they said, before you go and you me and my
22:57
Speaker 2: husband both have to become sort of well versed in
22:59
Speaker 2: stomach changes. And the first time I saw her stoma,
23:03
Speaker 2: and I'm embarrassed to say, but I'll say, I literally
23:06
Speaker 2: had to sit down the head to get me a chair.
23:07
Speaker 2: I felt so faint. I thought to myself, I'm never
23:12
Speaker 2: ever ever going to be able to change her storma never.
23:15
Speaker 2: I was like, inditionally my hair, I'm going to have
23:17
Speaker 2: to find someone else to do it. I'm never gonna
23:19
Speaker 2: leave the hospital like they're never gonna let us go
23:21
Speaker 2: because I can't possibly change the storma because it's too hard,
23:25
Speaker 2: it's too fiddly, and it makes me feel upset every
23:28
Speaker 2: time I see it. Basically and password to now at
23:33
Speaker 2: I'm pretty much changing Stonmas in my sleep. And I
23:38
Speaker 2: just learned a really crazy, I guess life lesson from
23:41
Speaker 2: this whole thing, that the limitations we put on ourselves,
23:45
Speaker 2: I'm never gonna be able to do this, I can't etc.
23:51
Speaker 2: It doesn't exist like it existed in my head that
23:54
Speaker 2: I can't do it as soon as I was able
23:57
Speaker 2: to smash through that, and of course you can. And
23:59
Speaker 2: I think that, like it's caught me so much in
24:01
Speaker 2: many other areas with Libby, with not Libby, with other
24:04
Speaker 2: things in the last eight months of what do you
24:06
Speaker 2: mean you can't do it? What do you mean you
24:07
Speaker 2: can't run a ten second?
24:09
Speaker 1: Like?
24:09
Speaker 2: And what do you really can't run? There? I think that, like, yeah,
24:13
Speaker 2: we don't even know how what we're capable of until
24:16
Speaker 2: you're pushed into the situation where you have to and
24:18
Speaker 2: then you've got no choice. And eventually I managed to
24:22
Speaker 2: pick myself up and learn how to do it. And
24:24
Speaker 2: they they said occasional leave the hospital. Now I almost
24:28
Speaker 2: like laugh at myself that that was ever something I
24:31
Speaker 2: struggle with. But yeah, so you just never know what
24:34
Speaker 2: you're thinking of.
24:36
Speaker 1: That's so true. That is so true. And especially when
24:39
Speaker 1: it comes to you know, with Hirshprungs and a lot
24:43
Speaker 1: of people that talked to about her Shprungs, you have
24:46
Speaker 1: to learn so much in such a short space of
24:50
Speaker 1: time because quite simply, you don't have a choice not to.
24:56
Speaker 1: When people talk about stomas and change in stone bags
25:01
Speaker 1: and et cetera, they have to you know, you have
25:05
Speaker 1: to learn how to do that because see, at some
25:08
Speaker 1: point you've got to leave the hospital. At some point
25:11
Speaker 1: they're going to they can't, they can't do it for you.
25:13
Speaker 1: And I totally understand that that fear of going I'll
25:17
Speaker 1: never be able to do this, I'll never be able
25:19
Speaker 1: to never be able to change the slow bag or
25:24
Speaker 1: you know what happens if something happens to the bag
25:27
Speaker 1: or what happens if you know there's a pro lapse
25:30
Speaker 1: or whatever it might be. But but you do, you
25:36
Speaker 1: kind of find that in a strength and you learn
25:39
Speaker 1: a lot and the actually go, yeah, I can, I
25:42
Speaker 1: can do this, I can, and like you say, that
25:45
Speaker 1: helps with a lot of other things in life.
25:47
Speaker 2: Yeah, we become like doctors overnight, like advocates doctors. Like
25:53
Speaker 2: I really do feel that, Like someone has said to
25:56
Speaker 2: me that with this whole experience, you you mourn, you accept,
26:01
Speaker 2: and then you advocate. And at the time I thought
26:04
Speaker 2: that was that was like I like existed in three stages,
26:07
Speaker 2: And actually, the more I'm going on now, I feel
26:09
Speaker 2: like all three of those stages exist at the same moment,
26:11
Speaker 2: at the same time, every minute of the day. And
26:14
Speaker 2: it's not like I've mourned Tick. I'm now accepting Tick,
26:18
Speaker 2: and I'm not going to just advocate and no feeling
26:20
Speaker 2: of mourning or no feeling of accepting is going to
26:22
Speaker 2: come up. It's it's a constant daily process where I
26:26
Speaker 2: have constant triggers where I am even there's this There's
26:30
Speaker 2: that was like a lullaby that was played twenty four
26:34
Speaker 2: seven while she was in like the the high dependency
26:37
Speaker 2: unit in Great Woman's Tree, and a friend of mine
26:40
Speaker 2: has that lullaby to put our kids to sleep. Okay,
26:43
Speaker 2: it's a lovely lullaby, but I hadn't heard that song
26:46
Speaker 2: since we were in Great Woman's Street and I'm at
26:48
Speaker 2: her house and I hear this lullabi and I like,
26:50
Speaker 2: all of a sudden, I'm like sort of panicking, and
26:54
Speaker 2: I'm right back there. So I just think that, like, yeah,
26:57
Speaker 2: there's constant triggers, but with the with with the morning
27:00
Speaker 2: and everything that has come with it, there's this fierce
27:04
Speaker 2: need to advocate for her. And I never had that before.
27:09
Speaker 2: I mean, my boys, of course I would advocate for them,
27:12
Speaker 2: but it's just it's not in the same way. And yeah,
27:17
Speaker 2: I think this whole process teaches you so much about
27:20
Speaker 2: yourself and yeah.
27:23
Speaker 1: Yeah, definitely, definitely, and you're absolutely right when it comes
27:26
Speaker 1: to triggers. I mean, you know this people that I
27:30
Speaker 1: talked to and even myself. You know, when I talk
27:32
Speaker 1: to people on here, and there's things that I've not
27:35
Speaker 1: thought about in thirty years that come up and I go,
27:38
Speaker 1: oh wow, yeah, and I went through that and it
27:41
Speaker 1: was you know, and that was yeah, and it becomes Yeah,
27:47
Speaker 1: it can be an interesting time when triggers come up.
27:50
Speaker 1: It can be an upsetting time obviously, but it's yeah,
27:53
Speaker 1: but things like the lullaby and it can just be
27:56
Speaker 1: really really simple things I don't have to be anything
27:59
Speaker 1: major like see surgery or anything in line.
28:01
Speaker 2: I used to take it so good Great Woman's Story,
28:03
Speaker 2: like little things. But it's also I think with this
28:06
Speaker 2: whole topic of Hashburgs and stormers, it's like quite a
28:09
Speaker 2: taboo topic. So obviously you're talking about sorry to.
28:12
Speaker 1: Say, well, the Clakes people will on this podcast almost
28:16
Speaker 1: all the time.
28:18
Speaker 2: Talk about it, but in a way it's it is
28:22
Speaker 2: quite taboo. And whilst I was actually in Great Woman's Story,
28:24
Speaker 2: a family who we have sort of a mutual friend
28:27
Speaker 2: came to visit me because her son is in year seven,
28:31
Speaker 2: so he's like twelve thirteen has a hashburgs and she
28:37
Speaker 2: came to visit me, and I couldn't get over how
28:39
Speaker 2: she was talking about Pooh so openly, Like it was
28:41
Speaker 2: the first experience where I'd ever had part of my
28:43
Speaker 2: four and five year old boys who like to talk
28:45
Speaker 2: about poo all day long, but it was the first
28:47
Speaker 2: experience of like an adult talking to me about Pooh.
28:51
Speaker 2: And I was like, I felt so uncomfortable. I was
28:55
Speaker 2: so weird for me and actually, like this is my
28:58
Speaker 2: life now, like this is this is what I talk about.
29:00
Speaker 2: Like I constantly nurses will call me and they say,
29:02
Speaker 2: what colorsapoo? What see as hapoo? Like this is like
29:05
Speaker 2: constant chat and actually it's like to work on yourself,
29:08
Speaker 2: but like it's natural and normal and should be spoken
29:12
Speaker 2: about and was like a journey also in a way.
29:17
Speaker 1: Yeah, yeah, absolutely, I think I think a lot of
29:21
Speaker 1: people feel that way, certainly at the beginning, but then
29:24
Speaker 1: when it almost kind of becomes a large part of
29:27
Speaker 1: your life, you then go, well, it just becomes the
29:29
Speaker 1: most natural thing in the world.
29:31
Speaker 2: Yeah. Yeah, And it's sort of like reminding yourself that
29:34
Speaker 2: not everyone is there to Like I'm saying in next
29:36
Speaker 2: I head when I was on the other end where
29:38
Speaker 2: this woman was like talking about it so openly about
29:39
Speaker 2: her son, and I was a bit taken. Aback, I'm
29:43
Speaker 2: now on the other side, and I have to remember that,
29:45
Speaker 2: like when I talk about my Libby stonema with my friends,
29:48
Speaker 2: they may not also be on the same page of
29:51
Speaker 2: like let's talk about it. Some of my friends really
29:53
Speaker 2: are the ones that have been there since sort of
29:56
Speaker 2: day one. Literally I had people, my best friend of
30:00
Speaker 2: my sister in law like literally holding my hand through
30:02
Speaker 2: this whole thing. So there are some people that really
30:05
Speaker 2: will talk about the consistency of pastoma. But I say
30:09
Speaker 2: for the general public, it's it's still a topic that
30:12
Speaker 2: is not massively spoken about.
30:15
Speaker 1: Yeah, yeah, and I think certainly I do. I don't
30:19
Speaker 1: know whether it's with other people as well, but live
30:21
Speaker 1: in this sort of bubble of hirsprungs. Sometimes when we
30:26
Speaker 1: go outside of that bubble and talk to people who
30:28
Speaker 1: have literally no idea what hirsh ones is, which I
30:31
Speaker 1: would say is probably ninety nine percent of the population
30:34
Speaker 1: have got no idea what this thing is. And then
30:38
Speaker 1: we talk to people about it and they and you think, oh, actually,
30:41
Speaker 1: I'm going to have to re explain everything, and you
30:44
Speaker 1: can't talk about this and that, and the end lonely.
30:47
Speaker 2: That's quite a lonely feeling.
30:49
Speaker 1: Yeah. Yeah, I think having a rare condition is to
30:54
Speaker 1: a certain degree because you can't you can't necessarily talk
31:00
Speaker 1: to people just straight up about it. And also because
31:06
Speaker 1: people with hirshprungs we don't display any outside symptoms. Not really.
31:11
Speaker 1: I mean, you totally balk past you know, one hundred people,
31:15
Speaker 1: you couldn't tell who's got hirshprungs or not. That's no idea,
31:18
Speaker 1: absolutely no idea.
31:21
Speaker 2: Thing about being compassionate to people. You have no idea
31:24
Speaker 2: what is going on inside to one's body and sides
31:26
Speaker 2: on's brain. And you're right, like you can walk past
31:29
Speaker 2: people and you have no idea, but you'd also have
31:31
Speaker 2: no idea the person that's struggling with mental health or
31:33
Speaker 2: struggling with and I think so much unseen that can
31:37
Speaker 2: be very isolating, could be very lonely, but also should
31:39
Speaker 2: as a population, teach us a lot about being compassionate
31:42
Speaker 2: to people, and yeah, and being really kind to people.
31:46
Speaker 2: That's also a big thing I've tried to lean into
31:50
Speaker 2: but experience hugely. I think, if in doubt, be nice,
31:56
Speaker 2: always always, always mind I will just say sort of
32:01
Speaker 2: one more thing if that's okay.
32:02
Speaker 1: About a point.
32:05
Speaker 2: So after Libby's, after we were discharged from the hospital,
32:10
Speaker 2: we sort of have follow up appointments, obviously with her
32:12
Speaker 2: consultant to see how she's doing. And I get quite
32:18
Speaker 2: emotional in these appointments. However, soma appointment, I was like,
32:22
Speaker 2: there's nothing to be emotional about. The stoma works. Everything's fine.
32:25
Speaker 2: I'm going to go to the appointment. I don't need
32:26
Speaker 2: anyone to come with me. I'm a brave person. I
32:28
Speaker 2: could do this on my own. I go and sit
32:30
Speaker 2: down with this appointment. And as I said that, initially
32:36
Speaker 2: the plan was that she was going to have a
32:37
Speaker 2: storma reverst which I think was sort of a big
32:41
Speaker 2: kindness that in the moment I when she was going
32:44
Speaker 2: now her surgery at three days old, it was like,
32:46
Speaker 2: a this is going to be temporary and then we're
32:48
Speaker 2: going to change it. Fast forward in this appointment with
32:53
Speaker 2: a consultant that I'm so brave because I'm sitting there
32:55
Speaker 2: by myself, she says to me, Right, so we have
32:59
Speaker 2: been thinking that maybe we won't reverse the stroma because
33:03
Speaker 2: really we have to think about Libby's future cares and
33:07
Speaker 2: whether as a nappies or adult stomas are more socially acceptable.
33:11
Speaker 2: And I'm like, gonna have been hit by a massive
33:13
Speaker 2: bus because I'm like, but what do you mean, like
33:16
Speaker 2: she's gonna get the so reversed, she's going to be fine.
33:18
Speaker 2: And at that moment, she basically explained to me that
33:21
Speaker 2: reversing a stonema and during the pull through surgery can
33:24
Speaker 2: actually lead to quite a few complications, which I'm sure
33:28
Speaker 2: people have spoken about and people know about here. But
33:33
Speaker 2: it's not a simple you just do the pull through surgery.
33:36
Speaker 2: You connect the good part of the bus for the
33:37
Speaker 2: bad part. Like in my mind sort of sound like lego,
33:39
Speaker 2: And that's sort of how it's explaining to my older
33:41
Speaker 2: boys that like, you take this piece of lego, and
33:43
Speaker 2: you connected this piece of lego, and like all of
33:45
Speaker 2: a sudden, it's just like it works. But she explained
33:48
Speaker 2: that's not always the case. And for Libby, who's going
33:51
Speaker 2: to have many other complications and difficulties and struggles to
33:55
Speaker 2: have something that works and we know works and is
34:01
Speaker 2: in her mind maybe more socials And I know it's
34:04
Speaker 2: a difficult topic to talk about and think about, but
34:06
Speaker 2: is more socially acceptable than adult nappies. If Libya is
34:10
Speaker 2: not able to learn to use the bathroom on her
34:13
Speaker 2: by herself, and then adult stumers are sort of the
34:18
Speaker 2: way to go. The whirst time I walked out of
34:20
Speaker 2: that appointment, I said, I'm never ever going to the
34:22
Speaker 2: appointment by myself ever again, because I'm clearly not as
34:24
Speaker 2: brave with I thought I was. And it took me
34:27
Speaker 2: time to grapple with this idea that the thing I
34:29
Speaker 2: thought was going to be temporary is now maybe no
34:31
Speaker 2: longer going to be temporary. I asked her to find
34:35
Speaker 2: out if there are any other cases of melt wallster
34:37
Speaker 2: syndrome in Great Almond Street that have had a stoma
34:39
Speaker 2: and then got it reversed. Because I was curious of
34:41
Speaker 2: people's view and because I don't know if you'll follow this,
34:44
Speaker 2: but in my mind, if we keep the stonma, we're
34:47
Speaker 2: not even giving her a chance to learn how to
34:49
Speaker 2: use the toilet by herself. And maybe she'd learn, maybe
34:51
Speaker 2: she'd learned to do it, but I wouldn't know that
34:53
Speaker 2: because she has a stoner and if we were I
34:57
Speaker 2: would want to give her any more complications that me
34:59
Speaker 2: and my husband for two children making very very adult
35:02
Speaker 2: decisions of whether we keep. But yes, just another element
35:08
Speaker 2: of this life of having to make really big decisions
35:12
Speaker 2: for her because she can't make them herself because she's
35:14
Speaker 2: eight months old. And so yeah, it's just I've gone
35:18
Speaker 2: on a journey obviously with that, and I do feel
35:20
Speaker 2: accepting of the fact that she has a stonema. And
35:22
Speaker 2: I know many adults in my own life who have stonmas.
35:26
Speaker 2: And again it's something that you would never know about.
35:28
Speaker 2: You could walk past people on the street and have
35:30
Speaker 2: absolutely no idea and someone even on I think it
35:34
Speaker 2: was good morning Britain went on and sort of changed
35:36
Speaker 2: their Stonma on National TV, which I thought was so
35:40
Speaker 2: brave but like huge respect and that's the kind of
35:45
Speaker 2: thing that I think we need to be doing, like
35:47
Speaker 2: raising awareness and and things like that. But yeah, so
35:49
Speaker 2: that's just the next sort of chapter of our Stama journey.
35:53
Speaker 1: Yeah, definitely, that is. Yeah, like you say, going to
35:58
Speaker 1: that appointment and then everything sort of not quite going
36:02
Speaker 1: as you expected to, which can often me the case
36:05
Speaker 1: with with Hirschbrungs, especially where you know, you think it's
36:09
Speaker 1: going one way and it's gone the other way and
36:11
Speaker 1: it's not. It's not always a linear process. I was
36:16
Speaker 1: spoken to plenty of people who talked about Paul through
36:19
Speaker 1: with long segment and actually they kept the stoma because
36:23
Speaker 1: it just said, actually it's better than you know, having
36:27
Speaker 1: you know, just a small bit of bow left and
36:29
Speaker 1: constantly having to go and whatever. So it's it's very
36:33
Speaker 1: much individual, individual preference on that sense. But just we
36:39
Speaker 1: sort of come towards the end. In terms of Libby
36:43
Speaker 1: and I you've spoken a little bit about the next
36:45
Speaker 1: steps for her, and because said she's only eight months,
36:51
Speaker 1: she's only eight months old. But in terms of Libby, herself.
36:57
Speaker 1: Choice seems very smiley, very happy. Is that how she
37:01
Speaker 1: is day to day?
37:02
Speaker 2: She cries when she's tired, and she cries, We'm just hungry.
37:06
Speaker 2: And that's that's it. Really. That they will do a
37:09
Speaker 2: surgery to remove the damage part of her bow becau
37:11
Speaker 2: they wouldn't want to keep the damage bowe inside of her.
37:15
Speaker 2: But then the next step, which was going to be
37:16
Speaker 2: the pull through, well, wepen, they'll keep the stair there.
37:21
Speaker 2: But she is the happiest, most gorgeous, wonderful. And again
37:25
Speaker 2: I know I'm biased, but she is. She's just a
37:29
Speaker 2: very very happy baby that is enjoying her food. And yes,
37:33
Speaker 2: she's doing.
37:34
Speaker 1: Really well, fantastic. Well, if you can't be biased for
37:37
Speaker 1: your own children, who can you be biased for?
37:39
Speaker 2: I know, guilty, but yeah, brilliant.
37:44
Speaker 1: No, it's really good, really really good. And if if
37:47
Speaker 1: anyone wants to follow you on Instagram, where can they
37:51
Speaker 1: follow you?
37:53
Speaker 2: Yes, it's growing with Libby, brilliant.
37:57
Speaker 1: And there's this this so much really nice. Just just
38:00
Speaker 1: want some good, wholesome content of smiley baby.
38:07
Speaker 2: Positivity. Trying to just rese it's just that's all we
38:14
Speaker 2: can do.
38:14
Speaker 1: Really, We're trying our best brilliant. Well, I thank you
38:18
Speaker 1: so much for the covert, especially really short though it says,
38:23
Speaker 1: and I wish see yourself, Libyan and the rest of
38:26
Speaker 1: your family all the very very best for the future.
38:29
Speaker 2: Thank you so much.
38:31
Speaker 1: Thanks, thank you, thank you for listening and being part
38:36
Speaker 1: of this growing community. If you have enjoyed the episode,
38:39
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Speaker 1: the name Tom's Hirshprung's Podcast. See you next week, people,