Latest / Tom's Hirschsprung's Podcast / Episode 61 - With Megha

Transcript

Episode 61 - With Megha · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode sixty one of Tom's Hirshprung's podcast. My guest today
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Speaker 1: is Mega and we are going to talk about your
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Speaker 1: daughter's Hirshbrungs journey. Now I will shock everybody to start
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Speaker 1: with and say that you Anya six weeks ago, so
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Speaker 1: for her play for coming onto the podcast. Thank you
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Speaker 1: so much for coming. I'm also joined by Tom's Hirschbrung's
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Speaker 1: podcast co founder Louisa, and welcome to you both, and
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Speaker 1: welcome to the podcast. Thanks so much, Tom, No problem
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Speaker 1: at all, thank you for coming on. As we mentioned,
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Speaker 1: you had your baby six weeks ago. Would you like
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Speaker 1: to take us back that short amount of time when
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Speaker 1: Anya was born.
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Speaker 2: Yeah, sure, so, as you can imagine, six weeks ago
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Speaker 2: is still very raw and fresh and like right now,
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Speaker 2: my world is just everything to do with Heirshwang. So
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Speaker 2: it's like all I'm sort of reading about, hearing about
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Speaker 2: listen and your your podcast has been one of those
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Speaker 2: things which I've just been listening to like sort of
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Speaker 2: continuously to just go through all the episodes and hear
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Speaker 2: people's stories. But yeah, so with my journey, you know,
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Speaker 2: I've I had Anya at this on fifth of December
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Speaker 2: twenty twenty four. I've already got a son who I
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Speaker 2: had in the UK in London, and Anya was born
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Speaker 2: in Sydney because that's where I live now. And when
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Speaker 2: I had my son, I had him like through the NHS.
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Speaker 2: It was a completely different experience. It wasn't the best experience.
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Speaker 2: So me and my husband were like, you know, we
2:26
Speaker 2: want to have one more child. We're going to do
2:28
Speaker 2: really nicely. We're gonna we're gonna go private and we're
2:31
Speaker 2: going to just you know, do the full work. So
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Speaker 2: had you know, by the Great God, had a really
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Speaker 2: smooth pregnancy. Scans, everything fine, no health complications throughout, nothing
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Speaker 2: to indicate that anything was going on behind the scenes
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Speaker 2: us you could say, so just you know, I had
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Speaker 2: an elective city section when in had the baby. You know,
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Speaker 2: the care was great. I had like an odd seutrician throughout,
3:00
Speaker 2: so she was with me throughout the whole journey. And
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Speaker 2: then you know, Anya was born and she latched on
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Speaker 2: straight away. When she came out, we had a first
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Speaker 2: feed she done exceptionally well, which was like the complete
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Speaker 2: opposite to with my son. So I was like, oh
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Speaker 2: my god, she's going to be amazing, Like she's going
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Speaker 2: to be a throw a like feeding. So everything was
3:23
Speaker 2: just like complete bliss at that point. And then we
3:27
Speaker 2: went up to our room just got settled, just adjusting
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Speaker 2: to sort of having you know, this new beautiful baby
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Speaker 2: in our life. And then it just as the hours
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Speaker 2: started going on, we were just like somethings just you know,
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Speaker 2: we're not sure, Like she just wasn't interested in feeding anymore,
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Speaker 2: and it was just really sort of confusing us to
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Speaker 2: what had changed, you know, all of a sudden. But
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Speaker 2: then we spoke to the midwives, and the midwives like, oh,
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Speaker 2: you had a sea section. The baby's very mucusy, so
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Speaker 2: she's just probably not interested. She just needs to get
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Speaker 2: that mucus out of her and then she'll start feeding
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Speaker 2: again straight away. And then they started doing all her obs,
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Speaker 2: you know, like bud sugars, all of that. Everything was
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Speaker 2: just coming back absolutely fine. Then I remember looking out
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Speaker 2: for mconium, like mconium was such a big thing because
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Speaker 2: with my son, the mconium came out in my waters,
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Speaker 2: so I had to go for an emergency sea section.
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Speaker 2: So with him it was a completely opposite experience. Mconium
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Speaker 2: meant that I had to get rushed in for a
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Speaker 2: sea section, and whereas with Anya it was like where
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Speaker 2: is the myconium? Like what's going on? And it was
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Speaker 2: in the back of my mind like a sort of
4:37
Speaker 2: a twelve hours had passed and I was like something,
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Speaker 2: you know, just started to feel off because I was like,
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Speaker 2: why has she not passed myconium? And then and you
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Speaker 2: forgive me in the future if you ever listen to this,
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Speaker 2: she's just a little bit hairy. So I mentioned to
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Speaker 2: the midwives. I was like, oh, you know she has
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Speaker 2: she you know, done a poo or anything that you've
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Speaker 2: like observed, and she's like because of me, wise were
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Speaker 2: like changing the nappies and taking care of everything like
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Speaker 2: it was you know, they were amazing, and they were
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Speaker 2: like cleaning her nappy and then a little bit of
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Speaker 2: hair was starting too much. She's like, oh, this looks
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Speaker 2: like mconium to me. So I was like, oh, what
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Speaker 2: a relief. So I was starting to relax, but then
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Speaker 2: I was like, that doesn't look like that started looking
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Speaker 2: just like hair to me, so I was like, I'm
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Speaker 2: not too sure. And then they have an amazing facility
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Speaker 2: which is like a night nursery where they they take
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Speaker 2: the baby so that you can rest and they bring
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Speaker 2: the baby back for feeds. So the next midwife who
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Speaker 2: was taking care of Anya, I brought her back sort
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Speaker 2: of you know, a few hours later. I was like, oh,
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Speaker 2: has she done a pooliet? And she's like yeah. The
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Speaker 2: previous midwife said that she was cleaning a nappy and
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Speaker 2: then there was you know, bits of like hair or
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Speaker 2: myconium or whatever. So I kind of just put it
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Speaker 2: in the back of my mind. I was like, oh, okay,
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Speaker 2: I feel like that they think that she has done
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Speaker 2: in like a poo, so we're good. Then again, she
5:58
Speaker 2: just wasn't feeding, just was interested, just was very lethargic.
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Speaker 2: And then one of the midwives like on another shift.
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Speaker 2: Then this is like on the Saturday, so two days later.
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Speaker 2: By this point, I just started speaking about her first
6:13
Speaker 2: bowel movement and the midwives was like, did you see
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Speaker 2: it yourself? And I was like, no, but it's marked
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Speaker 2: on the sheet that she had a dirty nappy, so
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Speaker 2: I'm assuming that you know, maybe on those couple of
6:27
Speaker 2: hours when she was in the nursery while the midwives
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Speaker 2: were taking care of her, that she'd done it. So
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Speaker 2: there was actually a lot of sort of misalignment between
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Speaker 2: the midwives. So then I was like, no, I haven't seen.
6:40
Speaker 2: And that's when my heart started to drop because I
6:42
Speaker 2: was like, then I started to google what does it
6:44
Speaker 2: mean if your baby hasn't passed? Meccay and hersh bruns
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Speaker 2: came up, and I was like, I clicked on it,
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Speaker 2: and then again I started reading and I was like,
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Speaker 2: oh my gosh. But I was like, this is only
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Speaker 2: one in five thousand. But I was like, surely we
6:56
Speaker 2: can't be a statistic. I was like, you never expect
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Speaker 2: that you're going to be that. So I again I
7:02
Speaker 2: was putting it to the back of my mind. And
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Speaker 2: my sister in law is a GP, so I started
7:08
Speaker 2: raising it to her and you could see that she
7:09
Speaker 2: was starting to look a little bit sort of concerned,
7:13
Speaker 2: but was trying not to like she was like, look,
7:15
Speaker 2: I don't think it's that. It could be this, it
7:17
Speaker 2: could be this, And then we were just trying to
7:19
Speaker 2: go through all the options. I was still just trying
7:20
Speaker 2: to remain calm. So then they the pediatricians were involved
7:25
Speaker 2: and they were like, okay, she hasn't passed maconium, so
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Speaker 2: we're gonna now see like if we can do something.
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Speaker 2: So they manually extracted it from her, so we thought, okay,
7:35
Speaker 2: it's come up. Maybe it just got stuck and she
7:37
Speaker 2: just needed a bit of assistance. And then they took
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Speaker 2: her up to the special care nursery and the next
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Speaker 2: morning me and my husband went up to see Anya
7:49
Speaker 2: because they said, look, we're gonna we're gonna observe her
7:51
Speaker 2: for the night and sea. And then as soon as
7:53
Speaker 2: I walked in, the midwives were like, oh, she pooed
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Speaker 2: overnight by herself, and I was like, oh my gosh,
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Speaker 2: you know, I started crying. I was like so happy,
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Speaker 2: like over the moon. And then they're like, yeah, you
8:05
Speaker 2: can go sit down with her and feed her and
8:06
Speaker 2: then you can take her back down to your room.
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Speaker 2: But then as I went to pick her up, I
8:11
Speaker 2: noticed the billy's vomit around her and they took an
8:17
Speaker 2: aspiration like an aspirate from her stomach and it was
8:20
Speaker 2: just all bi alell and it just looked really off
8:24
Speaker 2: and I was just like, this just does not look
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Speaker 2: right to me. So they immediately called the doctor. My
8:32
Speaker 2: obstetrician she had come up at that point, and I
8:34
Speaker 2: showed her a picture of it, and you could see
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Speaker 2: she looked a bit sort of like you could just
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Speaker 2: see everyone's faces. And then I could overhear the nurses
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Speaker 2: talking and saying, oh, we think that baby's got hirshbuns disease,
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Speaker 2: and I'm like, I'm like, what is hirshbuns?
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Speaker 1: Like.
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Speaker 2: I was trying not to read too much into it
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Speaker 2: because I knew I would just get really anxious, sort
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Speaker 2: of going into that rabbit hole, and I was like,
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Speaker 2: I'm not going to read into things unless I need to.
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Speaker 2: So the obstetrician then came and no, sorry, the pediatrician.
9:02
Speaker 2: He he came back to our room and me and
9:05
Speaker 2: my husband were sitting there and he just said, look,
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Speaker 2: this is really concerning. And I just thought, okay, it's concerning.
9:14
Speaker 2: They're just going to keep her in the hospital I
9:17
Speaker 2: delivered up for a little bit longer. And he's like,
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Speaker 2: I've actually called for the Emergency Transfer Service for Kids
9:26
Speaker 2: to take Anya to a specialist hospital. And then I
9:29
Speaker 2: was like, oh, okay, Like is this you know, just
9:31
Speaker 2: a like a check up thing, and he was like, no,
9:35
Speaker 2: this is pretty urgent. And I was like, when does
9:37
Speaker 2: she have to go and he was like, I've called
9:40
Speaker 2: them already and they should be here anytime soon. And
9:44
Speaker 2: that's when just everything just everything just started to sort
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Speaker 2: of like cave in. And I was just like, what
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Speaker 2: does this mean? All of this? And then he was
9:51
Speaker 2: just like, she needs to just go for further check
9:52
Speaker 2: up and see what's going on. And at this point,
9:55
Speaker 2: I'm four days past my delivery C section as well,
9:59
Speaker 2: and I hadn't been discharged from the hospital. And then
10:04
Speaker 2: as like we're just sort of in the room trying
10:06
Speaker 2: to process everything. I get a call saying, okay, the
10:08
Speaker 2: emergency Transfer service is here. Do you want to come
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Speaker 2: up and say bye to Anya? And as I go
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Speaker 2: upstairs again, they're like she's in this like huge incubator thing.
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Speaker 2: She's being strapped up, the ambulance team is all there.
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Speaker 2: It looks pretty terri It's terrifying because you're just like,
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Speaker 2: what the hell is going on? You know, and I
10:28
Speaker 2: just I was breaking down, and then they were just like, okay,
10:31
Speaker 2: someone has to go with her, So my husband went
10:35
Speaker 2: with her, and then I was like, okay, I need
10:37
Speaker 2: to get to this hospital as well. So you know
10:41
Speaker 2: that ended up happening. They turned the sirens on, they
10:44
Speaker 2: took her away, and I was like, this just feels
10:46
Speaker 2: so wrong, Like I was just like, my baby is
10:49
Speaker 2: being taken away from me. It was just it was heartbreaking.
10:53
Speaker 2: Was it was just probably just one of the worst
10:56
Speaker 2: parts of like feeling of the unknown and what was
11:00
Speaker 2: to come. And then she got transferred to especially Children's
11:05
Speaker 2: Special Hospital, where we've been at since then. So it's
11:09
Speaker 2: been over a month and we're still here. Then she
11:12
Speaker 2: got transferred to NIKU and they obviously they ran all
11:16
Speaker 2: their tests and biopsies, and you know, part of me
11:19
Speaker 2: was still just hoping, like I really just hope that
11:21
Speaker 2: this is not something like that, because you go onto
11:25
Speaker 2: the groups and sometimes some of the stuff you read
11:27
Speaker 2: can be a little bit negative as well. So still
11:32
Speaker 2: just hoping, still just waiting, and then her initial biopsy
11:34
Speaker 2: results came back and they were just like, yeah, it's
11:38
Speaker 2: Hirshmungk's disease. But they're like, but you know, she's feeding,
11:41
Speaker 2: like she was still feeding great, she was still after
11:44
Speaker 2: washouts like poohing really well. So they were like we
11:48
Speaker 2: suspect that she's got short segment hirshprings disease, and I
11:53
Speaker 2: was reading again that you know, the more sort of
11:57
Speaker 2: severe types of Hirshprings disease are more the genetic side
12:00
Speaker 2: of things, whereas if it's a random one, you're more
12:02
Speaker 2: likely to have short sigma. So I was like, no
12:04
Speaker 2: one in my side of the family or my husband's
12:07
Speaker 2: side of the family have it. So I was like,
12:08
Speaker 2: surely it'll be just you know, we'll be in the
12:10
Speaker 2: eighty to eighty five percent at least. It will be
12:13
Speaker 2: short segment, she'll have a call through and we get
12:16
Speaker 2: to go home. So by all her behaviors and the
12:20
Speaker 2: way she was doing, she was doing great. We went
12:23
Speaker 2: in with that expectation and then luckily the surgeon who was,
12:30
Speaker 2: you know, doing her call through surgery. He's like the
12:33
Speaker 2: main person in the hospital who does you know, Hirshprung's
12:37
Speaker 2: related surgery. So we're like, great, we've got a you know,
12:39
Speaker 2: an excellent surgeon. And we had a chat with him
12:42
Speaker 2: and he was like, okay, we're going to do it
12:43
Speaker 2: next week. So I was like, great, let's just get
12:46
Speaker 2: this done. We'll be home before Christmas, you know, perfect.
12:51
Speaker 2: So surgery day clmes, we you know, mentally prepare again.
12:56
Speaker 2: It's not easy knowing that your child that you know,
12:58
Speaker 2: they go through everything about their and have to go
13:00
Speaker 2: into anesthesia and this and that and all the potential complications.
13:06
Speaker 2: So you know, surgery day comes, she goes in. My
13:10
Speaker 2: sisters had flown out from London to come support me
13:13
Speaker 2: as well, because it was just really hard because being here,
13:18
Speaker 2: like even though I have like my husband and his family,
13:20
Speaker 2: but just having your sisters just to give you that
13:22
Speaker 2: strength and support and just get you through those days
13:26
Speaker 2: of the waiting, it was really helpful. So we're all
13:29
Speaker 2: just you know, getting ready for the day. The day came,
13:34
Speaker 2: it was a long sort of eight nine hours. We
13:38
Speaker 2: get the call that she's come out of surgery, and
13:40
Speaker 2: we're like, yes, you know, everything's gonna be great. We're gonna,
13:42
Speaker 2: you know, just we're just gonna get on with that life,
13:45
Speaker 2: knowing that newborn life now and you know, get home
13:48
Speaker 2: to my my three, like nearly three year old son.
13:52
Speaker 2: And then they take us into a room and the
13:54
Speaker 2: surgeon sat down and he was like there were a
13:57
Speaker 2: few surprises, and that's that's just when I knew, like,
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Speaker 2: like oh my gosh. So he was like, first of all,
14:07
Speaker 2: when we it was supposed to be just a straightforward
14:10
Speaker 2: pull through, but that's what we had, you know, thought
14:12
Speaker 2: it was going to be. And he was just like,
14:14
Speaker 2: we went in and her whole large intestine was collapsed,
14:20
Speaker 2: which basically meant that she's total colonic basically, and then
14:26
Speaker 2: he said there was also a part of her small
14:28
Speaker 2: intestine also impacted as well, and then he said she
14:34
Speaker 2: also had a bow perforation, so they had to sort
14:37
Speaker 2: of open her up and do fix that all up.
14:40
Speaker 2: And then he was like, you know, yep, so she's
14:44
Speaker 2: come out with a stoma bag and we, like I
14:51
Speaker 2: that was just kind of the main gest of things.
14:52
Speaker 2: And then after that I just went numb, like I
14:55
Speaker 2: could not process anything that he was saying. I could not.
14:59
Speaker 2: I just went like my world just like it just
15:02
Speaker 2: went completely still for me. And luckily my sisters were there,
15:07
Speaker 2: so they were asking all the questions. They processed it
15:11
Speaker 2: as much as a shock that it was for them.
15:13
Speaker 2: They you know, especially my older sister. She was amazing.
15:17
Speaker 2: She she asked all the questions. And then afterwards, the
15:21
Speaker 2: surgeon he could see my face and he's like I'll
15:23
Speaker 2: give you a bit of time and then I'll come back.
15:25
Speaker 2: So he came back sort of half an hour later,
15:27
Speaker 2: and then that time I was just like I just
15:29
Speaker 2: can't believe it, Like I just cannot believe it because
15:33
Speaker 2: of she just did not display any of those signs
15:35
Speaker 2: that she was so severely impacted by this. And you know,
15:42
Speaker 2: then it was all the stuff of like she has
15:44
Speaker 2: to sort of stay in hospital until she grows, we
15:47
Speaker 2: have to monitor all of these different things, and it
15:49
Speaker 2: was just like all of this information all of a
15:51
Speaker 2: sudden to process. It was just a huge shock. It
15:54
Speaker 2: was just a huge, huge shock. And yeah, so we've
16:00
Speaker 2: just been sort of you know, we were expecting to
16:03
Speaker 2: go home on Christmas Day and it's you know, coming
16:07
Speaker 2: up to mid jan and we're still here. You know.
16:10
Speaker 2: Then even after that, we just kept going through so
16:13
Speaker 2: many different hurdles because then she got like an infection,
16:17
Speaker 2: like a back to your infection where she had to
16:19
Speaker 2: be on anti Barot's for two weeks. Then she then
16:24
Speaker 2: they said that they had to test her to see
16:25
Speaker 2: if she had meningitis. So they had to do like
16:27
Speaker 2: a lumber puncher from her spine. That was on Christmas Day,
16:31
Speaker 2: and it was just horrible. It was just like one
16:34
Speaker 2: thing after another after another, like this test, that test,
16:37
Speaker 2: and just constantly just trying to go in on the
16:41
Speaker 2: morning in the morning and being really positive to them,
16:44
Speaker 2: being told, Okay, we think that she's got x y
16:46
Speaker 2: Z and we need to test and do a blood test,
16:49
Speaker 2: we need to do a kidney ultrasound, we need to
16:51
Speaker 2: do this, and you're just like, can just hard give
16:53
Speaker 2: us a break?
16:54
Speaker 1: Yeah? Yeah, absolutely, absolutely, Wow, that is incredible story. Oh
17:02
Speaker 1: is there anything you want to jump in with, Louisa or.
17:07
Speaker 2: I? I don't really know where to begin.
17:11
Speaker 1: Now, you know how I feel every week.
17:16
Speaker 3: I guess like just how strong like you must have
17:22
Speaker 3: been obviously your doul't not not must have been your rvying,
17:27
Speaker 3: you know, obviously your daughter an Yeah, she's she's being
17:32
Speaker 3: really strong and she's being incredible and doing amazing. It's
17:37
Speaker 3: literally amazing. And sending love to her, but sending love
17:42
Speaker 3: to you and your husband and your family as well,
17:47
Speaker 3: because that is just as you say when you kind
17:53
Speaker 3: of set your expectations of yes, it's frightening, but it's
17:58
Speaker 3: gonna be okay, you know, I feel and it's all
18:01
Speaker 3: gonna be okay, and then it's I guess when the
18:07
Speaker 3: surgeons sat you down, as you say in Vietnam, and
18:11
Speaker 3: then infection and so on and so forth and happen
18:15
Speaker 3: over Christmas as well. Yeah, I guess it just makes
18:20
Speaker 3: it even worse. But yeah, so how did you.
18:28
Speaker 2: How did you kind of.
18:31
Speaker 3: Where did you get your information from?
18:34
Speaker 2: On hirsh runs? Was it support groups? Was it on
18:38
Speaker 2: like Google?
18:39
Speaker 3: Was it surgeons?
18:42
Speaker 2: It's just a make sure of everything. I think it
18:45
Speaker 2: was initially just first of all, is accepting and processing
18:50
Speaker 2: what is hairshbrungs? Okay? And this is what my daughter has.
18:54
Speaker 2: And then it was just you get just so consumed
18:58
Speaker 2: in that world of what's online. And the hospital great,
19:03
Speaker 2: they gave me some good like booklets and leaflets and
19:06
Speaker 2: information sheets, and then I went I think I relied
19:10
Speaker 2: a lot of on sort of just information online. And
19:13
Speaker 2: I actually just recently ordered a book from Amazon which
19:15
Speaker 2: is about Eshburn's is the Missing Puzzle Piece or something
19:19
Speaker 2: like that, which is quite an interesting book. It's got
19:22
Speaker 2: a lot of factual information. And then I think there
19:25
Speaker 2: were a lot of days and nights where I just
19:28
Speaker 2: consumed myself in people's experiences off you know, Hirshbung's and
19:34
Speaker 2: what they've dealt with. And then I posted just something
19:38
Speaker 2: on one of the groups about what my daughter's diagnosis
19:45
Speaker 2: is and if anyone had anything similar, and this lady
19:48
Speaker 2: reached out to me and was just absolutely amazing. And
19:53
Speaker 2: that's one thing I have to say, like the amount
19:56
Speaker 2: of mums that I've actually now connected with online through
19:59
Speaker 2: Instagram and Facebook has been like even I created a
20:03
Speaker 2: new Instagram account, and even just the amount of people
20:06
Speaker 2: who have messaged and just said you can reach out
20:08
Speaker 2: to me and asking anything. With this many years into
20:10
Speaker 2: our journey, feel free to ask any questions and just
20:15
Speaker 2: actually just trying to focus more on positive experiences and stories.
20:19
Speaker 2: So one of the ladies was the first person that
20:23
Speaker 2: I spoke to him in so much detail, and she
20:24
Speaker 2: told me that her son also had similar sort of
20:27
Speaker 2: affected area as my daughter and was absolutely made and
20:31
Speaker 2: that gave me so much hope that you know what,
20:33
Speaker 2: this is not just all this is not all doom
20:35
Speaker 2: and gloom, like she can and will have a perfectly healthy,
20:38
Speaker 2: normal life. Like, yes, it's going to be a few
20:41
Speaker 2: hurdles that we may need to cross, but you know,
20:45
Speaker 2: it's not impossible, and we will get there, and just
20:48
Speaker 2: focusing on those positive stories I think has really just
20:51
Speaker 2: given me a lot of hope. And that's what I
20:53
Speaker 2: tried to do. I'm trying not to sort of get
20:56
Speaker 2: consumed on the negative side of things. I think, like
20:59
Speaker 2: everyone's journey in Hirshpring's, I think feels quite unique and
21:02
Speaker 2: different and she has to go on her own journey
21:07
Speaker 2: and I can only sort of really focus on that
21:09
Speaker 2: and not get too consumed about like it's helpful to hear,
21:13
Speaker 2: but not get too down on that.
21:17
Speaker 1: Yeah, definitely, I think you're right when you say about
21:21
Speaker 1: a community, because I think that there's so many and
21:25
Speaker 1: I've met so many people in the last year or
21:27
Speaker 1: so that are so positive and have been through and look,
21:34
Speaker 1: I mean there's negative sides that we know as well,
21:38
Speaker 1: and we don't sort of shy away from that, and
21:40
Speaker 1: there's lots of people who post, you know, ups and
21:43
Speaker 1: downs and all sorts. But the general feel and vibe
21:48
Speaker 1: that I get from the groups I'm in and the
21:51
Speaker 1: people are talked to, and maybe it's just the people
21:54
Speaker 1: I interact with, is that they are so positive. And
22:00
Speaker 1: people who've been listening to each episode will probably know
22:03
Speaker 1: the people that I'm talking about, and you've probably talked
22:05
Speaker 1: to quite a few of them as well, but they
22:08
Speaker 1: are they're so positive and so kind of you know, yes,
22:13
Speaker 1: you've had this enormous shock happened to you, especially if
22:17
Speaker 1: it's not you know, like me, like Louisa, especially if
22:21
Speaker 1: it's not in your family to begin with, it's a
22:24
Speaker 1: heck of a shock. I can imagine only sort of
22:28
Speaker 1: what my parents have said to me, and I imagine, Louise,
22:31
Speaker 1: of what your parents have said to you. That is,
22:35
Speaker 1: you go through an awful lot within three days, four
22:41
Speaker 1: days a week. But that strength of community, I guess,
22:48
Speaker 1: can be incredibly helpful what is undoubtedly an incredibly difficult
22:55
Speaker 1: time exactly.
22:57
Speaker 2: And then you sort of also realize, like to me,
23:01
Speaker 2: I know they say one in five thousand babies, but
23:03
Speaker 2: it feels like there's actually so many people that I've
23:08
Speaker 2: just found and like seen and everything, and I'm just like,
23:11
Speaker 2: is it really that rare? Is it as rare as
23:13
Speaker 2: we think? Like, I don't know. And then I also
23:17
Speaker 2: found it very interesting that they say that it's more
23:20
Speaker 2: likely in boys and girls, because I just see as
23:22
Speaker 2: an equally numb amount of girls as well as boys
23:26
Speaker 2: who are diagnosed with hirshbrung So, yeah, it's a really mysterious.
23:32
Speaker 1: Thing, very much. I mean, I did, I think it
23:35
Speaker 1: was a few weeks ago. I did a sort of
23:37
Speaker 1: quick calculation on the people I've interviewed, how many either
23:42
Speaker 1: are females with hirshbrungs or have daughters with hirshbrungs, and
23:48
Speaker 1: how many are males, and I think it comes out
23:51
Speaker 1: sort of I thinks about sixty five percent female. I
23:56
Speaker 1: don't know whether that's just because females are more willing
23:59
Speaker 1: to talk about hirshprungs or or what. I don't know,
24:05
Speaker 1: but it's it's something in the region. The last bit
24:10
Speaker 1: of research that I saw, I think it's three three
24:12
Speaker 1: out of every four people born with hirshprungs are male.
24:17
Speaker 1: I think that came from a leaflet from Reach, which
24:22
Speaker 1: again seems extraordinary just based on the amount of females
24:27
Speaker 1: that I know that we know with hirshprungs. It's it's yeah,
24:33
Speaker 1: I'd love I'd love to see if there's ever an
24:35
Speaker 1: updated paper, if anybody can tell me or why it's
24:39
Speaker 1: so prevalent in boys.
24:42
Speaker 2: Yeah, I do think that there's going to be a
24:45
Speaker 2: lot more focus and interest on this. I don't know.
24:48
Speaker 2: Maybe I'm saying that because I'm really interested in the
24:51
Speaker 2: topic now, but I think maybe just more and more
24:56
Speaker 2: people are able to share their experiences and stories, or
25:00
Speaker 2: even just that it's becoming more diagnosed now compared to
25:04
Speaker 2: what it was so many many years ago, which is
25:08
Speaker 2: is all very interesting. It will just be so interesting
25:11
Speaker 2: to see how the Hirshbarn space changes in the years
25:14
Speaker 2: to come.
25:15
Speaker 1: I think so. I think so most most definitely, there
25:18
Speaker 1: was one a couple of parts of your your story
25:21
Speaker 1: that I'll pick up on, and one that I think
25:26
Speaker 1: so many parents, including my own parents, can relate to
25:31
Speaker 1: when when your daughter is being taken to hospital. Yeah,
25:38
Speaker 1: and just that sort of numb feeling of having of
25:46
Speaker 1: having that. I think there are so many parents that
25:49
Speaker 1: I've spoken to that can sort of fully relate to that.
25:53
Speaker 2: It's the most terrifying thing you can ever go through,
25:57
Speaker 2: because you know you're recovering from just giving birth, you
26:02
Speaker 2: have all these hopes and expectations of want that new
26:05
Speaker 2: one period is going to look like, and just that
26:10
Speaker 2: level of vulnerability and just being able to surrender to
26:15
Speaker 2: these people who you've never met, who are just taking
26:18
Speaker 2: your child away from you, basically not knowing when you know,
26:25
Speaker 2: Like at that point, I was just like, where is
26:27
Speaker 2: she even going? Because like Sydney is still very are
26:31
Speaker 2: new to me. I've only been living here for more
26:33
Speaker 2: than over a year now, so just a different system,
26:39
Speaker 2: just a different country, all of those things, and just
26:43
Speaker 2: feeling so helpless as well in that moment, because I
26:47
Speaker 2: was like, there's just nothing that I can do right now.
26:50
Speaker 2: And you know, my job as her mother is to
26:53
Speaker 2: protect her and to look after her and shield her
26:56
Speaker 2: from anything, you know, and at that point, there was
27:02
Speaker 2: just nothing I could do. There was literally nothing that
27:04
Speaker 2: I could do. And that was the same feeling I
27:06
Speaker 2: had when she went in for her surgery that I
27:09
Speaker 2: was like, there is nothing I can do in this situation.
27:12
Speaker 2: As much as I don't want her to go through
27:14
Speaker 2: any of this, I have to just do what's best
27:19
Speaker 2: for her, and that is for her to go for
27:22
Speaker 2: all of these things like the surgery and being taken
27:25
Speaker 2: to the specialist hospital. In that moment, Yeah, it brings
27:30
Speaker 2: back a lot of like pain and emotion because it
27:33
Speaker 2: just still feels like yesterday that it all happened.
27:37
Speaker 1: Well, it kind of is it is. I'm sure you're
27:43
Speaker 1: aware of listening to you a few episodes. I do
27:47
Speaker 1: speak to a lot of parents when their children are
27:50
Speaker 1: maybe sort of two, five, ten, you know, and they've
27:54
Speaker 1: almost had a few years to process yeah, what they
28:00
Speaker 1: been through, and you definitely haven't yet.
28:04
Speaker 2: I'm still very much at the beginning of my journey.
28:07
Speaker 2: You're on this adventure. I'd like to say, yeah, like
28:13
Speaker 2: right now, there is still so much that we need
28:15
Speaker 2: to sort of get through and work on before we
28:18
Speaker 2: can get to go home. Which is the hardest part
28:22
Speaker 2: because no one can give us a clear answer as
28:25
Speaker 2: to sort of when we'll be able to go home,
28:27
Speaker 2: because it's all dependent on how well she does with
28:31
Speaker 2: reintroducing like four feeds again off milk, and how well
28:35
Speaker 2: she grows and gain weight. There's just so many different factors,
28:38
Speaker 2: and no one can just say, Okay, you'll go home
28:43
Speaker 2: in two weeks or three weeks, or a month or
28:45
Speaker 2: two months. It's just so unknown, which I think makes
28:49
Speaker 2: it even harder. It's not like a condition where you
28:52
Speaker 2: can just say, okay, you've had you know, a C section,
28:56
Speaker 2: for example, you get to go home in five days.
28:57
Speaker 2: It's not like that.
29:00
Speaker 1: Very different or take some antibiotics and then go home
29:03
Speaker 1: in two weeks or are they It doesn't. For anybody's
29:06
Speaker 1: very new to hirshbrungs, it don't work like that. Unfortunately,
29:11
Speaker 1: it would be lovely if it did. We just too
29:13
Speaker 1: a couple of tablets and then and then away we went.
29:16
Speaker 1: But it doesn't. It doesn't work like that. Unfortunately. One
29:22
Speaker 1: one thing as well that I did pick up because
29:24
Speaker 1: you said your daughter was feeding straight away, which again
29:31
Speaker 1: having total colonic hirshbrungs with feeding straight away. That from
29:36
Speaker 1: again from from what I hear from other people, that
29:40
Speaker 1: sounds incredibly rare. Did they did they sort of? Did?
29:44
Speaker 1: They did the nurses and doctors I guess possibly think
29:50
Speaker 1: that it was short second hirshbungs because she was feeding
29:52
Speaker 1: straight away, or did they sort of explain that to you.
29:57
Speaker 2: It was just like they were saying, just with her
29:59
Speaker 2: general behavior, because once she got transferred to the specialist hospital,
30:06
Speaker 2: they'd done like a few washouts and then her stomach
30:09
Speaker 2: sort of went down. She didn't have any more like
30:11
Speaker 2: bideous vomits or anything. So they're like, yeah, okay, she
30:14
Speaker 2: can go back to feeding. And again before we went
30:18
Speaker 2: into surgery, she was feeding amazingly well, which is and
30:22
Speaker 2: then she was doing really well with the washouts. So
30:25
Speaker 2: that's why it was just like, oh, this is most
30:27
Speaker 2: likely just a short segment thing, and you know you'll
30:30
Speaker 2: be home in a few days after surgery. Nobody like,
30:36
Speaker 2: literally so many of the nurses, the doctors, everyone were
30:39
Speaker 2: just really surprised. They were really all just taken aback
30:43
Speaker 2: when she'd come out surgery and they told us what
30:46
Speaker 2: they found.
30:47
Speaker 1: Yeah, yeah, most definitely. And I think I know you
30:50
Speaker 1: said before about being one in five thousand and how
30:56
Speaker 1: obviously how rare that is, and then I think the
30:59
Speaker 1: last thing is then you want to end up being
31:01
Speaker 1: more rare and then being in the I think total
31:06
Speaker 1: COLI like, am I right and say about five percent?
31:10
Speaker 1: Yeah about yep. So from from the things that I've read,
31:13
Speaker 1: I mean, I wouldn't quote that, but yeah.
31:16
Speaker 2: It found that. That's what I thought as well, because
31:18
Speaker 2: I was just like, because you go through different stage,
31:21
Speaker 2: you one except that okay, fine, it's hurtsprings. Then you're
31:24
Speaker 2: just like, Okay, it's probably just a mild version. Because
31:29
Speaker 2: you know, she was doing so well. There's no family history,
31:33
Speaker 2: there was just nothing to indicate that something it was
31:37
Speaker 2: something more like serious. So yeah, like I still even
31:43
Speaker 2: today to this day, just feel really surprised us like
31:45
Speaker 2: how she's and even now because she's got the storma
31:50
Speaker 2: and now she needs to heal from her surgery and
31:53
Speaker 2: just adjust to sort of her new sort of working intestines.
31:58
Speaker 2: Like she's really hungry, like she's and I'm just like,
32:01
Speaker 2: but she can't have four fees at the moment. So
32:04
Speaker 2: that's I think a really painful thing is just seeing
32:07
Speaker 2: her crying, wanting food and being so hungry. And I
32:10
Speaker 2: was like, you don't look like someone who has you know,
32:14
Speaker 2: total colonic hirshbrungs. Like it just doesn't make seconds.
32:17
Speaker 1: No, no, But but that's that's the thing, isn't it.
32:21
Speaker 1: I Mean, you know, if you were to line up
32:24
Speaker 1: a load of people in a lion, so which one
32:25
Speaker 1: has hirshbrungs, you wouldn't he wouldn't be able to tell.
32:29
Speaker 1: And I guess in a in a way that is
32:33
Speaker 1: that's a really good thing. Yeah, but you know what
32:38
Speaker 1: what the people with hirshbrungs look like, Well, they look
32:42
Speaker 1: like Louisa and lots of other people. You know, it's
32:46
Speaker 1: it's it doesn't mean and sort of I guess going
32:51
Speaker 1: on into the future, it doesn't mean that people are
32:55
Speaker 1: going to look differently at you or they're going to say, oh, well,
33:00
Speaker 1: that person clearly has hirshprungs. He nobody knows what hirshprungs
33:04
Speaker 1: is in the first place, so they won't say that
33:09
Speaker 1: and be just look like a regular, regular person, I guess.
33:16
Speaker 2: And that's what's so interesting you mentioned that because a
33:19
Speaker 2: lot of the time, when you know, people would look
33:23
Speaker 2: at her or I've like shared like photos with any
33:27
Speaker 2: like friends of family, but she looks normal, like she
33:30
Speaker 2: looks you know, she looks fine, and I'm like, yes,
33:35
Speaker 2: she because she is normal, you know, and that's why
33:39
Speaker 2: she looks that way. And it's kind of just a
33:43
Speaker 2: bit sort of it's a new thing for does everyone
33:48
Speaker 2: to like understand and sort of get their heads around
33:52
Speaker 2: to sort of like what it is. And you know,
33:55
Speaker 2: even like to me, I'm still learning every day sort
33:58
Speaker 2: of what hirshbungs is and you know that's associated with it,
34:03
Speaker 2: and from what I can, like what I've seen and
34:05
Speaker 2: what I've heard, like you do end up living absolutely
34:09
Speaker 2: normal life. So yeah, I.
34:12
Speaker 1: Mean, it's one of those conditions where I think you
34:16
Speaker 1: alluded to it earlier on when everybody's story is different,
34:22
Speaker 1: which I guess is kind of good from my point
34:24
Speaker 1: of view. Otherwise I'd run out after one episode if
34:27
Speaker 1: everyone's story was exactly the same. So it's good that
34:30
Speaker 1: everybody's story is different, but it is it's not. And
34:35
Speaker 1: I think that's where, again, going back to that community,
34:38
Speaker 1: it's about being careful when people do post things and
34:43
Speaker 1: they've experienced something with their child that they don't make
34:48
Speaker 1: like a generalization of it and say, oh, just because
34:53
Speaker 1: it happened to me, this will happen to you, and
34:55
Speaker 1: then X, Y and Z will happen and blah blah blah,
34:59
Speaker 1: because it is as I suppose you're in that stage
35:02
Speaker 1: at the moment, taking one day at a time, yes, exactly,
35:06
Speaker 1: and that kind of you know, this has happened, now,
35:09
Speaker 1: this is the way we're going to deal with it. Now,
35:11
Speaker 1: this happened or this, rather than sort of getting ahead
35:14
Speaker 1: and saying, well, this might happen, or this is definitely
35:16
Speaker 1: going to happen.
35:19
Speaker 2: It's so easy, aspies, And when you're so new to
35:25
Speaker 2: something like this, you automatically, if you do start assuming
35:29
Speaker 2: the worst and you're just like, Okay, is that going
35:32
Speaker 2: to happen to my child as well? Is this going
35:33
Speaker 2: to happen to my child too? And I have really
35:37
Speaker 2: just made a conscious effort to be like, I'm not
35:39
Speaker 2: going to dwell too much into like, you know, everyone
35:43
Speaker 2: has their experiences and you know, I'm sure we'll have
35:46
Speaker 2: ours too as well, but you can't fixate too much
35:50
Speaker 2: on that because I think it'll just it just won't
35:53
Speaker 2: serve you, especially at a time like this right now,
35:55
Speaker 2: where you're, just like you said, taking one day at
35:57
Speaker 2: a time, You're going on your own journey, and I
36:00
Speaker 2: think that's what sometimes you just need to sort of
36:03
Speaker 2: focus on as well, when you're at a time like this.
36:06
Speaker 1: Yeah, most definitely got one loser. Yep, feel free.
36:11
Speaker 3: I absolutely love that you refer to it as an adventure,
36:16
Speaker 3: because that's what it is, and for any parents who
36:21
Speaker 3: are new to it, it's it is an adventure. It's
36:24
Speaker 3: going to have ups and downs. I'm sure there's going
36:27
Speaker 3: to be times that you get lost, but you'll find
36:31
Speaker 3: your way again. So I guess to any new parents
36:36
Speaker 3: who are in your situation, what's kind of the best
36:39
Speaker 3: advice that you'd give who are six weeks horsebas still
36:47
Speaker 3: recovering themselves and trying to process it. What would you
36:52
Speaker 3: what would you say?
36:55
Speaker 2: I think one of the most key things is, just
36:58
Speaker 2: like I said, to remember that every journey is going
37:02
Speaker 2: to be so different on this and that's one thing
37:04
Speaker 2: that I keep trying to remind myself as well. It's
37:07
Speaker 2: just like, just because someone else has had a certain
37:11
Speaker 2: experience doesn't necessarily mean that we all have that experience.
37:13
Speaker 2: That we need to just figure that out on our
37:15
Speaker 2: own and to just being conscious of the information that
37:20
Speaker 2: you are consuming and reading as well. So I spoke
37:24
Speaker 2: to you one of the surgical team of doctors today
37:28
Speaker 2: and she even said to me, she's like, it's great
37:30
Speaker 2: that you're doing all your research or anything. She's like,
37:32
Speaker 2: but if there are things that come up, she was like,
37:36
Speaker 2: just check it with us. And I was like, that's
37:38
Speaker 2: actually a really good point because a lot of people
37:42
Speaker 2: just like to sort of take something that they read
37:45
Speaker 2: and think that this is what it means, but it
37:47
Speaker 2: doesn't necessarily mean that, and it's just like just soundboarding
37:51
Speaker 2: it with a reliable source, which would be the surgical
37:54
Speaker 2: team that's going to treat your child, for example. I
37:56
Speaker 2: think that's a good way to sort of give yourself
37:59
Speaker 2: peace of mind because they're the ones that I'm also
38:01
Speaker 2: going to be going on this journey with you, and
38:02
Speaker 2: they will be best place to advise whether that's actually
38:05
Speaker 2: right or rod or more suitable to say our scenario
38:09
Speaker 2: where it's like a certain type of hair sprungs and
38:12
Speaker 2: where as someone else who might be a different type
38:13
Speaker 2: of So I think just being very conscious of that.
38:17
Speaker 2: And three, I would just as hard as easy as
38:20
Speaker 2: it may sound, But it's just just reminding yourself that
38:25
Speaker 2: you're strong and you can get through this, and that
38:27
Speaker 2: you will find that strength and power for your child
38:29
Speaker 2: to get through this. And that's something that I really
38:31
Speaker 2: struggled with in the initial week because I was like,
38:34
Speaker 2: I can't do this. I can't do this. I can't
38:35
Speaker 2: do this. But then I was like, if I can't
38:37
Speaker 2: do this, then how am I going to give the
38:40
Speaker 2: strength and the courage and everything that my daughter needs
38:43
Speaker 2: right now to get through this? Like she's the one
38:45
Speaker 2: that's actually going through it, it's not even me. And
38:49
Speaker 2: you know, when you decide to become a parent, you
38:52
Speaker 2: accept that you're going to be a parent, regardless of
38:55
Speaker 2: the good days or the baddis and we're just having
38:57
Speaker 2: a bit of a blip at the moment, and you know,
39:00
Speaker 2: good days are to come, and that's that's my job
39:03
Speaker 2: and that's what I've that's what I'm there to do
39:05
Speaker 2: for her. So I just every day, even if something
39:10
Speaker 2: isn't going to plan or it's not a great day
39:14
Speaker 2: or you know, I do still have those moments where
39:17
Speaker 2: I'm just like why my daughter, Like why, and you
39:20
Speaker 2: know it's so unfair in this and everything, but I
39:23
Speaker 2: just feel like I need to pick myself up for her.
39:27
Speaker 2: And so yeah, and just you know, I would just
39:32
Speaker 2: say that just remind yourself that you need to give
39:35
Speaker 2: strength to your child. And my surgeon actually made a
39:39
Speaker 2: really good point as well. He said, like the mother's
39:41
Speaker 2: energy and vibration goes to the child as well, and
39:45
Speaker 2: that has really stuck in my mind since he said that.
39:48
Speaker 1: To me.
39:48
Speaker 2: I was just like, if I'm going to sit here
39:51
Speaker 2: crying all the time and you know, feeling sad and
39:54
Speaker 2: you know what, I'm like, I'm not serving her in
39:57
Speaker 2: any way that she needs me to right now. I
40:00
Speaker 2: need to be strong for her. Absolutely.
40:03
Speaker 3: A few points that you made there, so one of
40:08
Speaker 3: them was sound boording it with your SURGI call team
40:12
Speaker 3: because there's so many different ways the hoosh phones is
40:16
Speaker 3: treated around the globe, and so yeah, sound boording it.
40:23
Speaker 3: But also, as you say, just especially as a mother,
40:29
Speaker 3: just having that digging deep and finding that positive energy. Yeah, Tom,
40:39
Speaker 3: do you have anything.
40:40
Speaker 1: To Yeah, I think just as we sort of get
40:45
Speaker 1: towards the end here in terms of the near future
40:49
Speaker 1: for your daughter, I know you mentioned a little bit
40:52
Speaker 1: about sort of wait, it's a lot of a lot
40:55
Speaker 1: of waiting around, but in terms of the near future,
41:01
Speaker 1: where do you see her care going?
41:06
Speaker 2: So I think the sort of for what I can
41:10
Speaker 2: see for the next few months is just getting her
41:16
Speaker 2: sort of off. So she's on TPN at the moment,
41:18
Speaker 2: and where we've slowly started introducing like milk feeds, so
41:24
Speaker 2: it's just making sure that she's able to tolerate feeding
41:27
Speaker 2: without the TPN, and then hopefully we get to go
41:32
Speaker 2: home and we just sort of monitor her weight and
41:36
Speaker 2: growth and everything during that period and then we'll just
41:40
Speaker 2: have to again like it's just a waiting game, just
41:43
Speaker 2: like constantly reassessing it with the team over here at
41:47
Speaker 2: the hospital as to when they think that she's ready
41:49
Speaker 2: for the next surgery. So it's all on her. It's
41:53
Speaker 2: all on her and how she does. And you know,
41:57
Speaker 2: one of those sayings of like take a day by day,
41:59
Speaker 2: I found it so for trading in the beginning when
42:01
Speaker 2: the you know, sometime doctors will say that, but I'm
42:03
Speaker 2: just like, I literally have to take it day by day.
42:06
Speaker 2: I have no other ways, and I just have to
42:08
Speaker 2: focus on sort of now and the present and how
42:11
Speaker 2: we're going to get through today and then sort of
42:14
Speaker 2: just have some things to look forward to. So just
42:16
Speaker 2: looking forward to having her home, for her to spend
42:18
Speaker 2: some time like with her brother, just to get big
42:21
Speaker 2: and strong before she goes in for her next surgery.
42:25
Speaker 1: Fantastic. Yeah, I think taking it day by day, and
42:29
Speaker 1: I think for a lot of us would rather go
42:33
Speaker 1: five years into the future and just know what's going
42:35
Speaker 1: to happen. That's that's unfortunately, until time travel exists, that's impossible.
42:41
Speaker 1: But I just wanted to say thank you so so
42:44
Speaker 1: much for joining us. As we mentioned, you are six
42:48
Speaker 1: weeks postgiving birth, So enormous props to you for coming
42:54
Speaker 1: on and thank you so so much for sharing your story,
42:57
Speaker 1: and we wish you, your daughter and and the rest
43:00
Speaker 1: of your family all the very very best in the
43:03
Speaker 1: future so much.
43:05
Speaker 2: It's great. So you'll be on to see sort of
43:07
Speaker 2: Anya's journey. I'm trying to document it as much as
43:11
Speaker 2: I can whenever I have some time and space to
43:14
Speaker 2: be able to do that. So, you know, fingers crossed,
43:17
Speaker 2: and you know, we really appreciate all the good wishes
43:20
Speaker 2: from everyone, and yeah, let's just see how it goes,
43:24
Speaker 2: taking it day by day.
43:26
Speaker 1: Fantastic, Thanks so much. Thank you for listening to the podcast.
43:32
Speaker 1: Find us on Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen
43:37
Speaker 1: to previous episodes on Spotify by searching Tom's Hirshbrung's Podcast