Latest / Tom's Hirschsprung's Podcast / Episode 103 - With Gemma Carter

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Episode 103 - With Gemma Carter · 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: three of Tom's Hirshprungs Podcast. I am delighted to be
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Speaker 1: joined by Gemma. This astening Gemma, Welcome to the podcast
0:58
Speaker 1: takes so much becoming on. We have a lot of
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Speaker 1: really interesting topics to discuss that I will get onto
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Speaker 1: this this later, but lots of these topics do come
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Speaker 1: up with several parents, particularly mothers that I talked to,
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Speaker 1: and so I think what we're going to discuss today
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Speaker 1: is going to be very very relevant for so many
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Speaker 1: people who listen to this podcast. But of course as well,
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Speaker 1: you have a child with hirshbrungs. Yeah, who's around eleven
1:34
Speaker 1: months old. If I'm right in saying.
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Speaker 2: Yeah, so he turns one next month, it's Rowen. So
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Speaker 2: he's my second child. So I had a little boy,
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Speaker 2: Archie before Rowen, so never heard of Hirshbrung's disease before
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Speaker 2: at all. So this has been completely new to us.
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Speaker 2: I think in some respects we were quite lucky where
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Speaker 2: we had Rows. So we live in the Bristol area.
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Speaker 2: We didn't have him at the main hospital sent Michael's.
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Speaker 2: We had him at self meet and yeah, we were
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Speaker 2: kind of lucky. So I had Row extremely quickly this time.
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Speaker 2: My labor was really quick and I had high blood pressure,
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Speaker 2: which meant, I think, unfortunately I had to stay in,
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Speaker 2: but very lucky that I had to stay in after
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Speaker 2: giving birth. And we had I think a whole twenty
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Speaker 2: four hours, a lovely twenty four hours together, and then
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Speaker 2: things started to kind of take a turn. Row stop
2:52
Speaker 2: feeding and hadn't passed his first maconium and then started
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Speaker 2: to be sick, kind of the green bile, and I
3:02
Speaker 2: think we were we had no idea that kind of
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Speaker 2: what was happening. And at that point he was admitted
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Speaker 2: to NIKU, which again was an extremely kind of I guess,
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Speaker 2: scary time, not knowing kind of why what was going
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Speaker 2: to happen. And I think your twenty four hours post
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Speaker 2: birth nobody prepares you for that, because I think it's
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Speaker 2: something that nobody wants to talk about either, kind of
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Speaker 2: when you're pregnant and things like that. You you obviously
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Speaker 2: don't want to be scared, you don't want to talk
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Speaker 2: about the what ifs, But I think when you're in
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Speaker 2: that moment, it's very lonely, kind of just trying to
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Speaker 2: navigate all of that. So he spent I think it
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Speaker 2: was three different bits in the nico environment over that
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Speaker 2: then next twelve hours monitoring him, and then the vomit
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Speaker 2: started to really change color to go really really green,
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Speaker 2: and so at that point, I think it was about
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Speaker 2: three o'clock in the morning at that point on the fifteenth.
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Speaker 2: He was born on the thirteenth of November, and they said, look,
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Speaker 2: we need to admit him, We need to have a
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Speaker 2: check over him, do some tests, you an X ray,
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Speaker 2: kind of work out what's going on. And they did that,
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Speaker 2: and at that point they thought he had a blockage
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Speaker 2: in his bowel or it was twisted. So I kind
4:46
Speaker 2: of went back, not really knowing kind of what that
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Speaker 2: meant to then be like you need to pack your bags,
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Speaker 2: we need to go now. He needs to be transferred
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Speaker 2: so we were transferred down to Bristol Children's Hospital, and
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Speaker 2: again it was only twenty minutes away, which we were
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Speaker 2: really grateful for, and we were transferred there by ambulance. Again,
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Speaker 2: nobody prepares you for the incubator. They transport your new
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Speaker 2: baby in. You know you've left them okay, they're not
5:27
Speaker 2: well obviously, but kind of okay, and then all of
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Speaker 2: a sudden you're faced with wow, this is there is
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Speaker 2: something really wrong now and we don't know what. And
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Speaker 2: then we got to Bristol and we went straight in
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Speaker 2: and I'll never forget the consultant. Obviously they were worried
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Speaker 2: about row but he put his hand on my shoulder
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Speaker 2: and he said, no, how are you. Let's get you
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Speaker 2: a cup of tea. Let's make you comfortable. And that
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Speaker 2: felt like it was the first person who'd actually looked
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Speaker 2: at me and gone, yeah, we need to look at
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Speaker 2: we need to look after her as much as we do.
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Speaker 2: You know Rowan as well, And I think that grounded
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Speaker 2: me at that point when everything kind of fell out
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Speaker 2: of control. It really felt like it grounded me. And
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Speaker 2: the consultants had looked then at the scare and because
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Speaker 2: Bristol is one of the lead in surgical places in
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Speaker 2: the Southwest to know about Hirshbrungs. That was what they
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Speaker 2: thought it then, was that's the first time we'd heard
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Speaker 2: of Hirshbrungs. At that time, I didn't know what they
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Speaker 2: were going to do with Roe, but they did a
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Speaker 2: dilutation and the poor you know, surgeon then proceeded to
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Speaker 2: nearly get covered in absolutely everything. And it was one
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Speaker 2: of those lighter moments. He had one of his junior
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Speaker 2: doctors with him, and it went everywhere and everyone was
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Speaker 2: just like and it kind of I guess those moments
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Speaker 2: you remember, you remember the harder moments, but those those
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Speaker 2: lighter moments as well, And that was our I guess
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Speaker 2: start of hearing the word Hirshbrungs and kind of entering
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Speaker 2: into that kind of introduction.
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Speaker 3: So yeah, wow, that's yeah, that's That's the thing with Hirshbrungs,
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Speaker 3: isn't it is that those first generally, those first few
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Speaker 3: hours and days are just a complete whirlwind of.
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Speaker 1: Nicky visits, emotions, words that you never heard of before,
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Speaker 1: because again, why would you, you know, why would anyone
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Speaker 1: in your situation And the same for a lot of
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Speaker 1: people situations where Hirshbruns is not in the family in
8:05
Speaker 1: any capacity whatsoever, and there's no reason why you'd heard
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Speaker 1: of it. So then when they start to mention this
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Speaker 1: word about Hirshbruns, it then becomes you know, you then
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Speaker 1: kind of think, Okay, what is it? What does the
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Speaker 1: future hold? Potentially? I imagine you had an awful lot of
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Speaker 1: thoughts of that stage.
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Speaker 2: Yeah, And I think we'd gone from twenty four hours
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Speaker 2: relatively you know, I'd been fined during pregnancy, I had,
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Speaker 2: you know, a relatively smooth birth. We had those you know,
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Speaker 2: really lucky to have had those lovely first twenty four
8:43
Speaker 2: hours together, to then all of a sudden we're in
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Speaker 2: high dependency and it's like, wow, okay, what what is
8:54
Speaker 2: kind of what's going on? How did we get here?
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Speaker 2: And I think we were very lucky again with it
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Speaker 2: being Bristol, we had the the surgical you know doctor
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Speaker 2: that came down to see us that then kind of
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Speaker 2: had a plan. They started to, I guess, talk about Hirshbrungs,
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Speaker 2: and they had the information there in leaflets and stuff,
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Speaker 2: which you don't take in. They're the lengthiest leaflets kind
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Speaker 2: of that you've you've you've ever read and you were
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Speaker 2: trying to get your head around actually, you know, it's congenital.
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Speaker 2: It's been like this since he was you know, developed
9:41
Speaker 2: in it in the womb, and and here we are
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Speaker 2: and yeah, I think it's just surreal. And then someone
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Speaker 2: walks and luckily for us, they had started rolling antibiotics
9:54
Speaker 2: at self mead, so very soon it was like, he
9:59
Speaker 2: doesn't need to be in high dependency. We can go
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Speaker 2: to this surgical ward. He's got to have his energy
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Speaker 2: tube in, he's got to keep everything house him, but
10:07
Speaker 2: actually you can hold him now and we will come
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Speaker 2: back and speak to you tomorrow about you know, what's
10:15
Speaker 2: going to happen. And I think they'd he was stable
10:19
Speaker 2: enough to kind of look at us and think, I
10:22
Speaker 2: think they've been through enough today, because I think we
10:25
Speaker 2: just looked like we'd been hit by a bus. Yeah,
10:31
Speaker 2: it's been a lot. You know, when you start to
10:35
Speaker 2: talk about it, you think, I do remember some things,
10:39
Speaker 2: but there's some things that I just, yeah, I don't remember.
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Speaker 2: There's there's so many gaps.
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Speaker 1: Yeah, And that's a sort of I guess a trauma response,
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Speaker 1: isn't it slightly because everything is going on at once,
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Speaker 1: and like you said, you've gone from those first time
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Speaker 1: four hours of complete normality. Yeah, two forty eight hours later,
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Speaker 1: everything is whirlwind and you're off here, there, and everywhere,
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Speaker 1: and the brain can't necessarily respond to absolutely everything, and
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Speaker 1: so it is going to block some things out. Is
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Speaker 1: going to protect you, I guess in a way.
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Speaker 2: Yeah, And I think obviously, you know, we can talk
11:27
Speaker 2: about his journey a little bit more, but I think
11:30
Speaker 2: the kind of postpartum things you have just given birth.
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Speaker 2: You're trying to recover yourself. You know, you've been transferred
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Speaker 2: by ambulance, you may or may not have your your
11:44
Speaker 2: stuff with you. You know, you are in absolute agony,
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Speaker 2: trying to listen, trying to be there, trying to take
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Speaker 2: everything in. I mean, I don't think I'd slept for
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Speaker 2: forty eight hours. And I think that the trauma of
12:03
Speaker 2: Nicku as well. I was actually too scared is a
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Speaker 2: mother to go into Niku when he was admitted, and
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Speaker 2: I guess this is quite vulnerable. If you're not there,
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Speaker 2: it's not happening. And then I kind of went back
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Speaker 2: to the ward and unfortunately they didn't have any space
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Speaker 2: for me, so I was there without my baby, which
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Speaker 2: was you know, kind of upsetting as it was, and
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Speaker 2: I think that whole postpartum, but when you know you
12:37
Speaker 2: do have a sick child that mental health support and
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Speaker 2: you know, maybe having mentors or someone to just notice
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Speaker 2: the mum, you know, they are busy, they do do
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Speaker 2: their best, and we are, you know, exceptionally grateful for
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Speaker 2: all the help that we've had, but I think the
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Speaker 2: the mum is just your dad is just expected to
13:01
Speaker 2: kind of buckle up, which you'll do naturally, but it's
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Speaker 2: it's a lot, It really really is a lot. And
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Speaker 2: you know, in that moment, I think that kind of
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Speaker 2: shaped our journey in the beginning, that kind of that
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Speaker 2: trauma at the beginning and how hard it was to
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Speaker 2: cope and I guess process things.
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Speaker 1: Yeah, definitely, and we can definitely talk about that because
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Speaker 1: I know I alluded to that at the start, and
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Speaker 1: I know get back to Rwen's journey a little bit
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Speaker 1: later on. But it is something that I talked to obviously,
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Speaker 1: I talked to mums an awful lot through doing this podcast,
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Speaker 1: and it is something that I see more and more
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Speaker 1: and more about needing support for mums because like you said,
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Speaker 1: I mean, even if Hirschbrung's was in the family, and
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Speaker 1: I've spoken to parents before who've had multiple children with Hirshbrung,
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Speaker 1: so you sort of know what's coming. Kind of, it's
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Speaker 1: still traumatic then, so I can't imagine what it's like
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Speaker 1: if there's no history whatsoever. And then suddenly you're hit,
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Speaker 1: like you said, absolutely blindsided with all of these medical
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Speaker 1: terminologies that you've now got to be an expert in dilations, washouts,
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Speaker 1: Hirshbrung's ganglion cells, all sorts of things that you've suddenly
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Speaker 1: got to know. And as well as having going through
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Speaker 1: everything that you've just been through having just given birth,
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Speaker 1: which is unbelievable amount of energy that you're having to
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Speaker 1: take from that as well. It's I can't imagine quite
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Speaker 1: how that copes and fits together. I mean, it's when
15:03
Speaker 1: when it's sort of I guess when it's possibly, when
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Speaker 1: it's happening in the moment, you kind of navigate, and
15:11
Speaker 1: now that it's sort of then you all lay it
15:13
Speaker 1: out as to what happened. And it's unbelievable.
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Speaker 2: Yeah, and it is, and I think you it's all
15:25
Speaker 2: I can explain it is. It was like I was
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Speaker 2: watching a medical documentary. It was like I was watching
15:31
Speaker 2: I don't know casualty or something like that. I was
15:34
Speaker 2: in it, but I wasn't quite because I wasn't having
15:37
Speaker 2: a sick child. I was like, you know, nobody ever
15:42
Speaker 2: knows that they are. And you know, it's not just hirshbrungs,
15:44
Speaker 2: it's everything like around that postpartum experience. If you if
15:50
Speaker 2: you have a child that's done well, but all of
15:52
Speaker 2: a sudden, you know, our specialist bowel nurses turn up
15:56
Speaker 2: and they're like, we're going to learn how did you
15:59
Speaker 2: bow or wash out? So and I'm like sorry, and
16:04
Speaker 2: you know, they come at you with all this equipment
16:05
Speaker 2: and I'm like, no, no, no, we need to wait until
16:07
Speaker 2: my partner comes and they were like no, we need
16:11
Speaker 2: to learn. And our specialist bowl nurse We've got Claire
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Speaker 2: and Hillary and bless them. I needed them that day
16:19
Speaker 2: because they just took one look at me and they
16:20
Speaker 2: were like, but whether you whether you want to or not,
16:24
Speaker 2: right now, we're going to do this together. And it
16:27
Speaker 2: was that kind of like I needed somebody at that
16:30
Speaker 2: point to just be like, we can do this. We
16:32
Speaker 2: can do this together no matter how long it takes.
16:35
Speaker 2: Where we're we're gonna, you know, do it. And I
16:38
Speaker 2: think you just think stuff like that, or does a
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Speaker 2: district nurse not come out, does a pediatric nursing team
16:44
Speaker 2: not come out? It's like, oh, okay, it's it's us
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Speaker 2: and you you're just you know, even with that in recovery,
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Speaker 2: you know, there was times I was stood up doing
16:56
Speaker 2: a wash out and then halfway through I'd get dizzy,
16:59
Speaker 2: so I'd have to sit down and then we'd have
17:01
Speaker 2: to carry on again. And it's like, you know, with
17:05
Speaker 2: the caffeter and everything else. All hospitals do it different,
17:08
Speaker 2: but they're up and down and you know, things like that,
17:11
Speaker 2: and you're just like, how, I sit there and think
17:13
Speaker 2: how did I do that? And you know, you're sharing
17:17
Speaker 2: a shower on a children's ward with other families, and
17:21
Speaker 2: you know you're recovering postpartum, and then you're like, you
17:25
Speaker 2: go to ask for some pain relief. We were in
17:29
Speaker 2: a children's hospital, you can't have any. So then I've
17:32
Speaker 2: all of a sudden run out of paracetamol. And then
17:34
Speaker 2: if my partner wasn't coming for a little while, oh
17:37
Speaker 2: well I don't have any pain relief for a little while.
17:40
Speaker 2: And you know, it's simple things like that, and it's
17:44
Speaker 2: not that they don't want to help you. You know,
17:47
Speaker 2: they're helping the people that you want them, to help
17:49
Speaker 2: your children, to make them better and to care for them.
17:52
Speaker 2: But I think, yeah, it's very raw. You feel vulnerable.
17:56
Speaker 2: You know, you're walking around the hospital where you know
18:01
Speaker 2: you'd be sat at home, feeding comfortably in bed, or
18:05
Speaker 2: being able to have a shower or you know, in
18:08
Speaker 2: your own comfy clothes and not having to still as
18:11
Speaker 2: vulnerable as you do. And I think that was a
18:15
Speaker 2: real shock to the system in those twelve days of
18:19
Speaker 2: feeling so alone, and those nights as well. I don't
18:24
Speaker 2: know if it's just row, but when he had washouts,
18:26
Speaker 2: he was then starving, and within our hospital we did
18:31
Speaker 2: them twelve hours apart, and if that was too late,
18:36
Speaker 2: you know, that was my night then over and done with.
18:39
Speaker 2: And I remember the consultant coming in in the morning
18:42
Speaker 2: and being like, are you okay? And I'd be like,
18:47
Speaker 2: I went to bed at four and he'd be like,
18:51
Speaker 2: you've been awake from eight till four when I saw it,
18:55
Speaker 2: and I'd be like yeah, And I think he saw
18:58
Speaker 2: me like three days and you know it was him
19:00
Speaker 2: again that just took one look at me and when
19:02
Speaker 2: what can we do, Like we still have to do
19:05
Speaker 2: the washouts, but what can we do for you? And
19:07
Speaker 2: you know we moved them earlier. It meant I got
19:10
Speaker 2: a little bit of sleep. And it was just those
19:12
Speaker 2: simple acts of kindness from different nurses, different doctors of
19:17
Speaker 2: actually looking at me and thinking, you know, we need
19:22
Speaker 2: to support this mum to be able to support her
19:24
Speaker 2: little boy, to be able to you know, get through this.
19:28
Speaker 2: And you know it's a lot. You don't ever expect
19:34
Speaker 2: your baby that you, I guess should be enjoying, should
19:37
Speaker 2: be cuddling, having lots of that skin to skin to
19:41
Speaker 2: kind of become this object that you're having to do
19:44
Speaker 2: medical procedures too. And you know that's a lot postpartum
19:49
Speaker 2: as well. It's not what you signed up to. But
19:54
Speaker 2: it's you don't look at it in that way when
19:57
Speaker 2: you're in it, that you are still caring for them,
20:00
Speaker 2: you are doing the best for them. It's actually more traumatizing,
20:04
Speaker 2: I think in that beginning part.
20:07
Speaker 1: Yeah, most definitely. There's two points you made though, it's
20:11
Speaker 1: really really interesting, one of which sounds really good that
20:15
Speaker 1: the hospital were really on it with you, which is
20:19
Speaker 1: something that I will forever advocate for because if you're
20:27
Speaker 1: really struggling, then that's not going to be the best
20:31
Speaker 1: for Rowe. So to look, it's sort of a look
20:38
Speaker 1: looking at the whole picture and making sure that the
20:41
Speaker 1: parents are especially the mother is okay or as okay
20:46
Speaker 1: as you can be, I guess at that stage. So
20:49
Speaker 1: that I think is a really really interesting point and
20:51
Speaker 1: really good at the hospital were checking in on you,
20:55
Speaker 1: and it wasn't just constantly everything surrounding Row. The second
21:01
Speaker 1: part you said, Oh, the second point you made when
21:05
Speaker 1: it was kind of you felt as though you were
21:08
Speaker 1: watching yourself, and that again, that kind of I have
21:15
Speaker 1: heard that once or twice before from people where they
21:18
Speaker 1: where it doesn't feel real and it feels as though
21:23
Speaker 1: you're watching somebody else go through this. And I don't
21:29
Speaker 1: know if you can describe kind of what that felt like,
21:32
Speaker 1: but that must be feeling incredibly strange.
21:36
Speaker 2: Yeah, So on a side note, I've been having EMDR
21:41
Speaker 2: therapy to deal with trauma as part of this whole process,
21:45
Speaker 2: and it's in that that when I first started to
21:49
Speaker 2: explain that, because I said, I was just sat there
21:53
Speaker 2: and it's almost like you can smell smous, you can
21:57
Speaker 2: see things. It's a picture you can hear no noise,
22:01
Speaker 2: so people are speaking to you and I'm probably nodding,
22:06
Speaker 2: I'm probably going yeah. But like when he initially went
22:09
Speaker 2: into Nicky, I heard antibiotics, I heard tube, and then
22:17
Speaker 2: he went and then it was I was walking back
22:22
Speaker 2: to the ward on my own, you know, down this
22:25
Speaker 2: long corridor with nobody, and it was like why. And
22:31
Speaker 2: then also in hospital, you know, I'm sat there and
22:39
Speaker 2: you know, they're doing the wash out in front of me,
22:42
Speaker 2: and I'm just there just and again it's like I
22:46
Speaker 2: can picture it. It's all memories and stuff like that.
22:50
Speaker 2: But I remember almost then coming back out of it
22:53
Speaker 2: when they heard you know, do you understand, and being
22:57
Speaker 2: like I think I'd just wren't. I don't know? And
23:05
Speaker 2: I said I don't think. I said, I just I
23:08
Speaker 2: don't know. And Claire was like, don't worry. We'll come
23:12
Speaker 2: back tomorrow and we'll try again. You know, I'll leave
23:15
Speaker 2: you with the equipment tonight. You have a look at it,
23:18
Speaker 2: familiarize yourself with it. Is nothing scary. But they've been
23:23
Speaker 2: there for an hour. They'd been there for an hour
23:26
Speaker 2: doing that whole procedure, and I was just and that's
23:30
Speaker 2: all I that's all I can explain. You can see
23:33
Speaker 2: it happening, you're there in the moment, and you can
23:37
Speaker 2: remember smells or touches. I can remember what I was
23:40
Speaker 2: wearing or stuff like that, but the actual what was
23:43
Speaker 2: being said or anything. Yeah, not not a clue. And
23:48
Speaker 2: it's it's really strange. But it's almost like I guess
23:53
Speaker 2: your body's safety response to what you're what you're going through. Yeah,
24:01
Speaker 2: and I think you know a lot of mums will
24:04
Speaker 2: probably say I probably didn't think this was real until
24:09
Speaker 2: they actually came and said to us, we've had the
24:12
Speaker 2: results back from the bioty, this is what it is,
24:15
Speaker 2: this is you know, And then they start to talk
24:18
Speaker 2: more like we said about you know, is it in
24:20
Speaker 2: the family? Is it this that? That's when I think
24:24
Speaker 2: you're like, oh, we've got to think about this now,
24:27
Speaker 2: we've got to Actually we're sat talking about it. We're
24:30
Speaker 2: not being shown things, things aren't being rushed. It doesn't
24:33
Speaker 2: feel chaos, and I think you then kind of settle
24:37
Speaker 2: in a little bit. But those initial bit, yeah, it's
24:41
Speaker 2: almost like some weird disassociation to get through because you're
24:45
Speaker 2: so tired, you're so upset, you're so traumatized, you're so worried,
24:50
Speaker 2: you're you know, everything's so unexpected. Yeah, it's really strange.
24:58
Speaker 1: That's a good word actually, just association from it, because
25:02
Speaker 1: it's like you say, you you know, you're in that moment,
25:06
Speaker 1: but it's not quite it's not quite real, I guess.
25:12
Speaker 1: And that's yeah, it's and I imagine as there's a
25:16
Speaker 1: lot of parents who have been through that particular part
25:20
Speaker 1: where everything has changed so fast and so far from
25:29
Speaker 1: anything that you knew twenty four hours previous, that it
25:33
Speaker 1: is going to and that is going to create trauma.
25:38
Speaker 1: That's absolutely going to create trauma. And that's and yeah,
25:45
Speaker 1: I mean it's it's such a such a difference in
25:50
Speaker 1: those early stages that that's going to be yeah, monumental challenge.
25:58
Speaker 2: Yeah, and you know your baby, it's simple things that
26:02
Speaker 2: your baby's nail by mouth and you know, you're you know,
26:07
Speaker 2: I'm pumping. I'm just sat there pumping, pumping, pumping, pumping,
26:12
Speaker 2: and being awake that long and probably not eating properly
26:16
Speaker 2: and not getting enough rest, and you're just yeah, you
26:23
Speaker 2: it almost you're just sat there like, yeah, just what why,
26:28
Speaker 2: what's going on? What for? Why? Why?
26:31
Speaker 3: Us?
26:31
Speaker 2: What's happened? We don't know why we don't have any
26:34
Speaker 2: family history. You know, you're just trying to make You're
26:37
Speaker 2: just trying to make sense of everything whilst trying. But
26:43
Speaker 2: it's also just feeling like you're watching your baby, like
26:46
Speaker 2: there's there's not much you can do and you and
26:50
Speaker 2: your natural instinct as a parent is to make everything better,
26:54
Speaker 2: to do that, and I think when a lot of
26:57
Speaker 2: it is taken out of your hands, it's that really
27:02
Speaker 2: difficult space to be in. And I really did find
27:07
Speaker 2: that at night as well, within that postpart and bit.
27:12
Speaker 2: You you know, his quiet night would traumatize me. We're
27:16
Speaker 2: behind a blue curtain on a ward. There's poor children
27:20
Speaker 2: being willed in after having surgery and Rose losing his
27:23
Speaker 2: mind when they've just got his pain control, you know,
27:26
Speaker 2: they're pain under control. And it's it's also that you're
27:32
Speaker 2: already having a tough time and you're worrying about worrying
27:37
Speaker 2: about other people when you again you should just be
27:39
Speaker 2: recovering and having that time. And yeah, it's a strange
27:44
Speaker 2: place to be in in that hospital stay and that
27:48
Speaker 2: environment for sure. In the beginning.
27:52
Speaker 1: Is it a feeling I guess as well, because like
27:55
Speaker 1: you said, you just want to make everything better and
27:58
Speaker 1: do you want to make everything right? So is it
28:00
Speaker 1: almost like a kind of like helplessness feeling as well?
28:04
Speaker 2: Yeah, I think it was because I think there was
28:09
Speaker 2: about five or six days whilst we were waiting before
28:12
Speaker 2: having the biopsy, so we'd met had hairshbrungs. We didn't
28:18
Speaker 2: know whether it was I guess we'd started the procedures.
28:22
Speaker 2: They were terrifying to begin with. You're not used to it.
28:27
Speaker 2: It doesn't feel natural, it doesn't feel like something you
28:30
Speaker 2: should do. You're worrying about wait, how much fluid you put,
28:34
Speaker 2: all of that stuff, getting used to the equipment, and
28:39
Speaker 2: you're doing it with different nurses in the evening. You're
28:42
Speaker 2: not doing it with your specialist nurses all the time,
28:45
Speaker 2: or if Mike's there, we're taking the lead on it,
28:48
Speaker 2: and we're like, hang on, we had a nurse help
28:50
Speaker 2: with us yesterday. Now it's just us, and it's yeah,
28:55
Speaker 2: it's you. You just think it's not what I it's
29:00
Speaker 2: not what I should be doing. And like I said,
29:02
Speaker 2: I think it was that defining point of we'd had
29:06
Speaker 2: that biopsy, and I think it was then another five days.
29:12
Speaker 2: So then we started to talk about family history and
29:15
Speaker 2: things like that. And then the results came back and
29:19
Speaker 2: we were told that he had hirsh rungs, and yeah,
29:25
Speaker 2: we were in for i think another four days after
29:28
Speaker 2: that to get him stable. Obviously you have to get
29:32
Speaker 2: signed off in being able to do the washouts before
29:35
Speaker 2: you can you can kind of go home. So yeah,
29:39
Speaker 2: it was a whole fourteen days of just chaos. It
29:45
Speaker 2: felt like it didn't feel like you could enjoy any
29:53
Speaker 2: of it either, which it feels really sad, and it
29:56
Speaker 2: makes you feel bad saying that because you're lucky you've
29:59
Speaker 2: had your now you've had your baby, they've got here safely.
30:03
Speaker 2: You should feel grateful, you should feel happy, And I
30:06
Speaker 2: think it's really hard as a mum to admit that
30:10
Speaker 2: it's not always like that. You know, there was moments
30:13
Speaker 2: of joy and moments of you know, those little moments
30:17
Speaker 2: of you'd see that little bit of light when you
30:19
Speaker 2: were sat there with your partner in the room with
30:21
Speaker 2: Rowan and you'd have a little laugh or something like that.
30:25
Speaker 2: But those that Fortnite was very very raw, and I'm
30:29
Speaker 2: sure it is for a lot of parents of hirshbrungs.
30:32
Speaker 2: You're looking on the internet, you're reading the pamphlets that
30:36
Speaker 2: you've been given, trying to understand and because it's such
30:40
Speaker 2: a broad spectrum, everyone's journey is so different and you
30:45
Speaker 2: can either be terrified looking stuff up or being like, okay,
30:51
Speaker 2: we can do this. But in that space, there's just
30:54
Speaker 2: so many unknowns, so so.
30:56
Speaker 1: Many Yeah, that's the really really difficult bit, I think,
31:01
Speaker 1: isn't it, especially from where you are at this point
31:04
Speaker 1: with Rory's nearly nearly one, and you're having all of
31:09
Speaker 1: the same thoughts that every parent I've spoken to who
31:12
Speaker 1: has a child around that age is having, you know,
31:16
Speaker 1: what's next for the future, et cetera, et cetera, And
31:19
Speaker 1: you're right, it is. It's such a broad spectrum. Even
31:24
Speaker 1: when you've kind of nailed it down to short segments,
31:28
Speaker 1: you know, and and so I mean there's like five
31:30
Speaker 1: different types and then kind of nail it down to
31:34
Speaker 1: short segment and go right, okay, what do we know
31:36
Speaker 1: on short segment, and then there's still another hundred of
31:38
Speaker 1: things that could potentially be this that the other I know.
31:45
Speaker 1: Let's speak to Georgina who runs the Hirschbrungs dot cout
31:48
Speaker 1: a UK website and trying to put all of the
31:53
Speaker 1: information on there to cover all of the different types,
31:57
Speaker 1: to cover all of the different you know, potentials, things
32:01
Speaker 1: like intricolitis and all of these other things. If you
32:04
Speaker 1: think I have to think about it's just I mean,
32:08
Speaker 1: the website is going to be so much bigger when
32:11
Speaker 1: it's finished something.
32:13
Speaker 2: It's such a fantastic it's such a fantastic resource. And
32:17
Speaker 2: I think I came across Georgina by accident from your podcast.
32:23
Speaker 2: Our specialist Bowelness has shared about your podcast to us
32:27
Speaker 2: before we left, before we left hospital. Yeah, and so
32:34
Speaker 2: that's how we came across Georgina. And then obviously I
32:38
Speaker 2: followed her on Instagram and she set up that website.
32:40
Speaker 2: And I think, you know, regardless of it not being
32:44
Speaker 2: the same for everybody, there is something you will find
32:47
Speaker 2: on there that resonates with you, that helps you, that
32:52
Speaker 2: can help you to understand or you know, be a
32:56
Speaker 2: little bit more informed and stuff like that. And it's
33:00
Speaker 2: it's a safe space. It's dot co dot UK. It's
33:04
Speaker 2: not just random anything. It feels it feels safe, it
33:08
Speaker 2: feels you know, trusted. There's links to some of the
33:12
Speaker 2: main hospital like hospitals. You know, you know, her little
33:16
Speaker 2: boys treated it one of the leading places as well.
33:19
Speaker 2: It feels relatable, it feels you know, good, and it's
33:25
Speaker 2: you know, I think it's absolutely amazing, you know, what
33:28
Speaker 2: they've been through as well to do to make such
33:31
Speaker 2: a positive you know, out of a very difficult time
33:34
Speaker 2: to help others. And it really is good because nobody,
33:40
Speaker 2: when we start out on this journey with hirsh Rungs,
33:43
Speaker 2: knows what it's gonna gonna be like. And it's certainly
33:49
Speaker 2: kind of hour by hour, day by day for a
33:53
Speaker 2: lot of those beginning early months or years for people.
33:59
Speaker 1: Definitely definitely, And I think that that's the really tricky thing,
34:03
Speaker 1: isn't it. It's the slight unknown of Hirshbrung's because again,
34:09
Speaker 1: and just to sort of flip it around a little bit,
34:12
Speaker 1: I talk to parents who say, Okay, well we had
34:15
Speaker 1: to pull through. You know, it's a difficult time at
34:17
Speaker 1: the beginning, but now they're five, six ten whatever, doing
34:22
Speaker 1: really well, no issues, you know, so there is I
34:26
Speaker 1: think it's important sometimes to point out there is that
34:29
Speaker 1: side to it as well that people kind of you know,
34:34
Speaker 1: I've interviewed a few people, whether it's because the kind
34:36
Speaker 1: of said, oh, I don't really know what to say
34:38
Speaker 1: because things are going well, and I don't you know,
34:42
Speaker 1: I haven't got a huge story, so I just want
34:44
Speaker 1: to say things are going well. And I love those
34:46
Speaker 1: stories as well. So I think as much as a
34:51
Speaker 1: lot of things that you may hear, especially on here
34:54
Speaker 1: and you know, Instagram and Facebook and whatever, there'll be
34:58
Speaker 1: a lot of people asking questions and saying, well, this
35:01
Speaker 1: has happened, what do I use for this? And wash
35:04
Speaker 1: outs and blah blah blah blah blah. There are a
35:06
Speaker 1: lot of really good, feel good stories out there, and
35:09
Speaker 1: there are probably a lot of probably more than we
35:11
Speaker 1: realize because I guess people don't necessarily share if they've
35:15
Speaker 1: got nothing going on.
35:16
Speaker 2: And this is I guess this is the space we
35:20
Speaker 2: are in and I have been kind of wanting to
35:23
Speaker 2: do this podcast, and you know, having the short segment,
35:27
Speaker 2: and I think our journey, I don't know if lucky's
35:33
Speaker 2: the right word. It's feeling smoother than the most. I
35:38
Speaker 2: think we were lucky for being in Bristol, close to
35:40
Speaker 2: the hospital, a unit that's maybe used to Hirshbrun's nos
35:47
Speaker 2: of it and things like that. He was very textbook.
35:52
Speaker 2: If you went down the list of symptoms forty eight
35:55
Speaker 2: hours later. You know, he hit a lot of them,
35:58
Speaker 2: and being Bristol, they knew their stuff about it as
36:02
Speaker 2: well and could explain to us and have those you know, conversations.
36:09
Speaker 2: I think it was hard. You didn't want to link
36:15
Speaker 2: in with support groups or anything in the beginning because
36:18
Speaker 2: you almost didn't want to know how bad or good
36:23
Speaker 2: things may have been. It was just like it felt
36:27
Speaker 2: a scary space to be in. I think Row we
36:32
Speaker 2: did wash outs for three and a half months twice
36:37
Speaker 2: daily with Row, and then we had his pull through
36:42
Speaker 2: surgery in February this year at Bristol, and yeah, I
36:50
Speaker 2: think that's another day postpartum again that you don't expect
36:56
Speaker 2: to be handing over such a small baby to have
37:01
Speaker 2: surgery when you've never experienced anything like that before, and
37:07
Speaker 2: you know, just that day negotiating the consent forms and
37:11
Speaker 2: everything like that, actually how much you sign for how
37:15
Speaker 2: much is unknown, and the surgeons saying, you know, don't
37:19
Speaker 2: worry if we're down for hours, it really doesn't you know,
37:22
Speaker 2: it doesn't matter. It's not an indication, you know, when
37:26
Speaker 2: they say the biopsies when they're doing them in the
37:29
Speaker 2: surgery life can take up to forty five minutes to
37:31
Speaker 2: come back. So you're like, she was like, don't be worried.
37:35
Speaker 2: If we leave in the morning and we don't come
37:37
Speaker 2: back till eight o'clock at night, it doesn't mean anything's wrong.
37:41
Speaker 2: It just means we're being kind of faro and you know,
37:45
Speaker 2: to check everything, and you're almost sat there and you're
37:48
Speaker 2: just like, what is going to happen? You know it.
37:52
Speaker 2: That is a very hard place to be in as well,
37:56
Speaker 2: because ultimately you're never going to know that outcome to
38:00
Speaker 2: all the outcome comes till your surgeon walks back through
38:03
Speaker 2: your your curtain in your in your room and I
38:07
Speaker 2: think you know, we were again Rose operation went well.
38:14
Speaker 2: He had fifteen to twenty centimeters removed and reconnected, and
38:25
Speaker 2: his recovery. I think we were in hospital for six
38:28
Speaker 2: days afterwards. And that stay again was it was smooth.
38:39
Speaker 2: But it does take you right back again being on
38:41
Speaker 2: that same ward with the same people, the same nurses,
38:45
Speaker 2: you know, lying next to them again where they're vulnerable
38:47
Speaker 2: or you know, all their drips and everything, and yeah,
38:52
Speaker 2: I don't think they don't. You don't. You're never prepared
38:56
Speaker 2: to say goodbye to your child in that way, to
38:58
Speaker 2: have an operation then and then their recovery. You know,
39:04
Speaker 2: it's hard as a parent, but I think I do
39:08
Speaker 2: feel conflicted sometimes, I guess about sharing our journey because
39:11
Speaker 2: it has been somewhat smooth.
39:15
Speaker 1: Yeah, but I think that's good. Yeah, It's like you said,
39:19
Speaker 1: you know, some people don't want to go on the
39:21
Speaker 1: forums and the Facebook forums and whatnot because as much
39:25
Speaker 1: as there's some really good stuff on there, there's a
39:27
Speaker 1: lot of I mean, it's Facebook. There's everything under the
39:33
Speaker 1: sun on there. You know, there's the good stuff, there's
39:36
Speaker 1: the not so great stuff. There's the question about this
39:39
Speaker 1: and question about that. And I think some people do
39:42
Speaker 1: kind of just leave that alone and they go, I
39:45
Speaker 1: just don't want to, you know, I don't want to
39:46
Speaker 1: see that. And I totally totally get that, totally get it.
39:51
Speaker 2: I think it's the headspace you're in. As you get
39:53
Speaker 2: further along in your journey, you become more inquisitive. You
39:56
Speaker 2: want to find people. When you've I guess got over
40:00
Speaker 2: that initial bit you in your normal life, it feels
40:04
Speaker 2: like you can't relate to anybody anymore in some respects
40:08
Speaker 2: because it is so rare, because you know, you may
40:12
Speaker 2: get lucky if someone of someone you know has heard
40:15
Speaker 2: of somebody, but if you're not, then it does feel lonely.
40:20
Speaker 2: And I think as you meet different milestones or different
40:24
Speaker 2: pathways within your treatment and to then try and find
40:28
Speaker 2: people to be like, oh, okay, I've found somebody today
40:32
Speaker 2: with short short segment Hirshbrungs and they're around ten months old,
40:36
Speaker 2: the same age as Row, and they've had this and
40:39
Speaker 2: you're like, that's how that's really helpful to read or
40:43
Speaker 2: you start to become when you wean them, or is
40:46
Speaker 2: anyone worried about any different types of food or does anything,
40:51
Speaker 2: because again, you are the expert for your own child
40:55
Speaker 2: in some ways, and everything is so different that I
40:59
Speaker 2: think when you get to that certain point, you almost
41:02
Speaker 2: need those helps and those tips to kind of learn
41:05
Speaker 2: your new normal and just move on a little bit
41:09
Speaker 2: from that initial Yeah, stay, I feel and I do
41:14
Speaker 2: find it more helpful now. I didn't in the beginning,
41:18
Speaker 2: but I definitely do now for sure.
41:22
Speaker 1: Yeah. Yeah, I mean it's one of those things, isn't it,
41:24
Speaker 1: where it's kind of it's there for people who want
41:27
Speaker 1: it when they want it, and I think the when
41:30
Speaker 1: is really important, very very important. So I guess we
41:36
Speaker 1: sort of round out towards the end here in terms
41:39
Speaker 1: of the future, let's start future for Rowan. What kind
41:45
Speaker 1: of well I guess, both medically and non medically, what
41:48
Speaker 1: do you see in his future?
41:50
Speaker 2: Yeah, So we recently for Hirshbrung's Awareness Month and again
41:57
Speaker 2: by chance, we didn't realize September was hirshs Awareness Month
42:01
Speaker 2: that we set out to do a twenty four hour
42:05
Speaker 2: row So we're row for Rowan to raise money for
42:09
Speaker 2: Bristol Children's Hospital to give back for you know, the
42:13
Speaker 2: care we've received from Rowan. So I think we're nearly
42:17
Speaker 2: on about four eight hundred pounds, which we will dedicate
42:24
Speaker 2: fifteen hundred to the Cots for Tots that specialist kind
42:28
Speaker 2: of ambulance and things that transferred him to self mead
42:31
Speaker 2: and they were so kind. They gave him a certificate
42:36
Speaker 2: and a leaflet and a little hat and a little
42:39
Speaker 2: dummy and it said, you know, you've been very brave
42:41
Speaker 2: today and transferred and he'll never know that because he'll
42:44
Speaker 2: never remember, but it's you know, those things for the
42:47
Speaker 2: memory box, and you know they were so lovely in
42:51
Speaker 2: that moment of what felt like sheared desperation. So we
42:54
Speaker 2: wanted to give something back to that, and we're also
42:58
Speaker 2: going to give a large proportion to the surgical ward,
43:01
Speaker 2: Penguin Ward, which he had his surgery on and he
43:04
Speaker 2: stayed on again to benefit other people and some for
43:08
Speaker 2: the Grand Appeal. We're very keen to turn a negative
43:12
Speaker 2: into a positive and we were very lucky to live
43:15
Speaker 2: just seven miles away from Bristol, and you know, I
43:20
Speaker 2: met some incredible mums while I was in there, you
43:23
Speaker 2: know that had traveled from Devon, from Cornwall. You know,
43:27
Speaker 2: stories of their partners because there was a music concert
43:30
Speaker 2: on in Bristol, having to pay three hundred pounds for
43:33
Speaker 2: hotels overnight whilst they were waiting for the hospital accommodation
43:37
Speaker 2: because you know it is full sometimes And I think,
43:41
Speaker 2: you know, we really wanted to make a positive impact
43:45
Speaker 2: for other parents in that with it being the leading
43:49
Speaker 2: surgical unit and to Chinese. Some of those pressures and
43:54
Speaker 2: things like that we may not have experienced them ourselves,
43:57
Speaker 2: but I think it's good to do good. So we've
44:01
Speaker 2: done that and I think we're going to get back
44:03
Speaker 2: to go to the hospital to present them with a check,
44:08
Speaker 2: which will be lovely to do. And I think for
44:13
Speaker 2: myself and Rowan. I've been lucky enough as a mum
44:17
Speaker 2: to be given EMDR therapy through the birth trauma and
44:22
Speaker 2: lost team again, which has been so helpful in this journey.
44:28
Speaker 2: And I know it's not available to everybody, but I
44:33
Speaker 2: think what I would say in us talking about that
44:35
Speaker 2: postpartum to reach out. You know, you may come across people,
44:40
Speaker 2: medical professionals that don't validate what you've been through because
44:44
Speaker 2: it's very much about your child. But your story isn't
44:48
Speaker 2: you know, as you know your story is there. It
44:51
Speaker 2: has happened to you. You have been postpartum in a
44:55
Speaker 2: world which you didn't expect. And I think I've been
45:00
Speaker 2: doing this since June now and it has been a
45:04
Speaker 2: huge help. It's shaping the way I want to be
45:06
Speaker 2: a mum for row and I think, you know, as
45:09
Speaker 2: we get to his first birthday in November, of course
45:12
Speaker 2: it's going to be difficult going back and all those
45:15
Speaker 2: first again where we were this time last year, and
45:20
Speaker 2: I think it's just carrying on to take things as
45:23
Speaker 2: they come. He's just started nursery now, see that comes
45:26
Speaker 2: with a whole world of challenges and nervous nurse and
45:32
Speaker 2: you know it being winter and things like that. We've
45:36
Speaker 2: had to go in for a couple of suspected entricolitises
45:42
Speaker 2: so far, but that is obviously a worry. So I
45:45
Speaker 2: think for us now, it's trying to get through winter unscathed,
45:51
Speaker 2: enjoying this year's Christmas period looking a bit different, and
45:56
Speaker 2: just having that family time and appreciating and reflect on
46:00
Speaker 2: the last year. And yeah, I think doing things like this,
46:04
Speaker 2: hopefully being able to do more and give a bit
46:09
Speaker 2: more back and yeah, so hopefully link in with some
46:14
Speaker 2: local families and stuff like that. We're very lucky that
46:18
Speaker 2: Bristol has a Facebook support group for if you've been
46:21
Speaker 2: through Bristol with Hirsh Runs, there is a Facebook group
46:27
Speaker 2: there as well. So I think when I feel more
46:32
Speaker 2: like sharing my story and stuff like that, and I'm
46:37
Speaker 2: back to work because I've had extended leave to have
46:41
Speaker 2: the therapy to help with the last year, yeah, so
46:46
Speaker 2: I think, yeah, that's kind of where we're at, just
46:50
Speaker 2: trying to look forward. It's obviously you never know how
46:54
Speaker 2: things are going to go, but just to appreciate things
46:58
Speaker 2: and have that time as a firm back again.
47:01
Speaker 1: Absolutely, well, I really really appreciate you coming on telling
47:06
Speaker 1: your story because as I said at the Star, there'll
47:07
Speaker 1: be a lot of parents who I know will find
47:11
Speaker 1: this incredibly beneficial. So I really really appreciate you coming
47:15
Speaker 1: on because I know it's it's been a tough one,
47:17
Speaker 1: so it's I really really do appreciate it. And I
47:21
Speaker 1: know it goes without saying, but I'll say it anyway
47:23
Speaker 1: that I wish you Rowan and your whole family the
47:27
Speaker 1: just the very very best for the future.
47:31
Speaker 2: Thank you, Thank you, Thank.
47:35
Speaker 1: You for listening and being part of this growing community.
47:38
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
47:41
Speaker 1: leave a review, and share it with someone who might
47:44
Speaker 1: need it. You can connect with us on social media
47:47
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
47:52
Speaker 1: See you next week.