Latest / Tom's Hirschsprung's Podcast / Episode 136 - With Megan Wallis

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Episode 136 - With Megan Wallis · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode one hundred and
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Speaker 1: thirty six of Tom's Hirshprungs Podcast. I am very glad
0:52
Speaker 1: this morning to be joined by Megan and good morning Megan,
0:56
Speaker 1: many thanks so much for covered on. We are here
1:01
Speaker 1: to chat. We're here to chat about your son, Oakley,
1:06
Speaker 1: who has Hirshprungs. But interesting story that I can't wait
1:10
Speaker 1: to delve into. Lots of little subjects. I know we
1:14
Speaker 1: were just talking a little bit off air about lots
1:17
Speaker 1: of hits and pieces that have happened in his life
1:21
Speaker 1: so far, his short life so far, because he's not
1:24
Speaker 1: very old at all. But yeah, really really interested to
1:29
Speaker 1: delve into those. But I'll hand over to you in
1:33
Speaker 1: so would you like to take us back to I
1:36
Speaker 1: guess the beginning.
1:38
Speaker 2: Well, when Ucer was born in November twenty twenty four,
1:46
Speaker 2: I had in visy section because I had just social diabetes.
1:52
Speaker 2: And when we went for my thirty eight week scan,
1:56
Speaker 2: he's the rest of his body was measuring thirty eight
1:59
Speaker 2: weeks bang on, but his stomach was measured forty two
2:02
Speaker 2: weeks and three days. And they told me or we'll
2:06
Speaker 2: have to get him out as soon as possible because
2:09
Speaker 2: that's due to gestational diabetes. Didn't think anything of it,
2:13
Speaker 2: you know, no problem. They tried to induce me, it
2:16
Speaker 2: didn't work, and then they took me down for it.
2:20
Speaker 2: It was technically cluster as an emergency, but I was
2:22
Speaker 2: already booked in on Tuesday, the twenty sixth of November,
2:27
Speaker 2: and the cluster as an emergency because the induction failed.
2:31
Speaker 2: So we had him see. Section went great, you know,
2:36
Speaker 2: back to the room. Family came in, but he wouldn't
2:40
Speaker 2: feed at all. He had no interest in the breast,
2:44
Speaker 2: He had no interest in a bottle. He was bright eyed,
2:50
Speaker 2: but just like any newborn looking about. And I kept
2:55
Speaker 2: saying to my midwives, he won't feed, he won't feed,
3:00
Speaker 2: will make him feed. So I said, well, I want
3:03
Speaker 2: to breastfeed. I don't want to give him a bottle
3:05
Speaker 2: or well, you're going to have to. So they fetched
3:08
Speaker 2: bottles and were force feeding him effectively, and he was
3:13
Speaker 2: thrown every single mortal bit of it back up every time,
3:18
Speaker 2: and then he'd cried because he was hungry, so he'd
3:21
Speaker 2: try again, and he was actually having a lot of
3:25
Speaker 2: wet nappies, but there was no steel. And then so
3:30
Speaker 2: I had him around half past three on the Tuesday
3:34
Speaker 2: and sent me home at five o'clock on the Wednesday,
3:37
Speaker 2: which I thought was a bit oh, that's too soon
3:41
Speaker 2: after a C section for me, but they needed the room,
3:44
Speaker 2: so we went home and by the time we got home,
3:48
Speaker 2: every time I tried to feed him, it became yellow
3:52
Speaker 2: the sick with a funny smell, and I was like, no,
3:55
Speaker 2: this isn't right. You know, this didn't happen with my
3:59
Speaker 2: first so I don't know what it is. Still no poo,
4:04
Speaker 2: but I didn't I didn't even think anything of that.
4:08
Speaker 2: And then the community midwife came at eight o'clock in
4:11
Speaker 2: the morning, took one look at him and said, getting
4:13
Speaker 2: back to hospital right now. There's something. There's something not right.
4:17
Speaker 2: So we went back up to the hospital and they're like, well,
4:19
Speaker 2: he's totally fine. So well he isn't fine because he's
4:22
Speaker 2: not feeding. He's now throwing up green sick, which can't
4:28
Speaker 2: be very good. You know, that's not just stomach acid.
4:32
Speaker 2: And they give him an enema and me and my
4:35
Speaker 2: partner Andrew literally watched him in the little crib blow
4:40
Speaker 2: up and we thought he was going to burst. He
4:42
Speaker 2: was just getting bigger, and it was literally he was
4:44
Speaker 2: like the size of a balloon. It was huge. And
4:49
Speaker 2: Andrew rushed off to the desk and they're like, we
4:52
Speaker 2: don't know what it is, we don't know what is
4:54
Speaker 2: took him away, cannulated him, put an eng tube in.
5:00
Speaker 2: As soon as they put the NNG tube in, all
5:02
Speaker 2: the screen stuff started flowing right out of it. And
5:05
Speaker 2: we were like, what the what is going on? I
5:08
Speaker 2: don't understand. And the rushing back to Skaboo and for
5:14
Speaker 2: Newcastle Hospital because that was the closest specialist hospital to us,
5:19
Speaker 2: even though it's like seventy miles away and the nursing Skaboo.
5:25
Speaker 2: I will never forget it. She looked at me and
5:28
Speaker 2: she put her hand on my shoulder and she said,
5:30
Speaker 2: if he makes it off the ambulance, it'll go straight
5:32
Speaker 2: into theater and you don't know, we don't know what's wrong.
5:36
Speaker 2: And I was like, oh, So they came in with
5:40
Speaker 2: the incubator and everything from Newcastle, and the two people
5:44
Speaker 2: on the ambulance were amazing. They explained everything to us that,
5:48
Speaker 2: you know, they weren't using all the machines on it.
5:50
Speaker 2: It was just there to keep them warm, and he
5:55
Speaker 2: to measure his oxygen and stuff like that. There was
5:59
Speaker 2: no big machine, so no medication going into him anything.
6:03
Speaker 2: And they'd asked Carlile that have you took an X ray? Oh? No,
6:12
Speaker 2: So they got him back out, put him in the thing,
6:14
Speaker 2: did a portable X ray and you could see that
6:17
Speaker 2: his bow was impacted. It was humongous. And they still
6:23
Speaker 2: said to me, although we don't know what that is,
6:27
Speaker 2: and I'm like, on his I'm not a doctor. So
6:31
Speaker 2: we got blue lighted all the way to Newcastle, and
6:34
Speaker 2: luckily I got there before anybody else. So Andrew and
6:40
Speaker 2: my family were following behind, but there'd been a crash
6:43
Speaker 2: on the A sixty nine, so they nearly got stuck
6:46
Speaker 2: in that. So I got there. We got rushed down
6:49
Speaker 2: straight to the room and the doctor came straight in
6:52
Speaker 2: and luckily Andrew was only a minute or two behind,
6:56
Speaker 2: and he was like, please, can you calm down? And
7:00
Speaker 2: I was like, no, you're going to take him to
7:01
Speaker 2: theater and they're like, no, we're not. We're going for
7:04
Speaker 2: an X ray and then we're going to give him
7:05
Speaker 2: a wash out. And I'm thinking, how do you wash
7:08
Speaker 2: a baby out? You know, I didn't understand. So we
7:15
Speaker 2: then we went off to X ray. They said it
7:18
Speaker 2: hasn't changed, it's got a massive impaction. We'll wash him
7:24
Speaker 2: out and there was was nine balls on the bed
7:30
Speaker 2: around him of stuff that just kept coming out and
7:35
Speaker 2: coming out. But as they were doing it, you could
7:39
Speaker 2: see him the relief and his stomach going down and
7:45
Speaker 2: he completely settled, and I was like, oh wow, I
7:51
Speaker 2: don't understand. So they never said anything to us about
7:54
Speaker 2: what it could be or anything, because this was like
7:56
Speaker 2: one o'clock in the morning by this point. That's how
7:58
Speaker 2: long it took them to get any answers that Carlisle
8:01
Speaker 2: or anything. And when they came to us the next
8:06
Speaker 2: morning and it had a really settled night. It slept
8:09
Speaker 2: all night, but it hadn't really slept either, right from
8:12
Speaker 2: being born to going back to the hospital, so you'll
8:17
Speaker 2: have been tired. They said, have you ever heard of
8:20
Speaker 2: first Frung's disease? And I was like, never, We think
8:26
Speaker 2: that's what it is. He's going to have to have
8:27
Speaker 2: a biopsy and I was like, how do you do that? Well,
8:32
Speaker 2: we're going through the bomb, take tissue and send it off,
8:36
Speaker 2: but he can't have it until he can go twenty
8:39
Speaker 2: four hours without a washout. And I was like, right, okay.
8:43
Speaker 2: She was like, so we don't know how long that'll take.
8:46
Speaker 2: You know, it might be the it might take two weeks,
8:49
Speaker 2: might take three weeks, it might take two days. We
8:52
Speaker 2: don't know because we can't let you feed him yet.
8:58
Speaker 2: So that's when they told us google it, just look on.
9:02
Speaker 2: They told us to go on all the hair or
9:06
Speaker 2: it was the University of Sydney in Australia, which I
9:11
Speaker 2: found really funny after the fact because the six Children's
9:18
Speaker 2: Hospital of Toronto specialize in it. And I knew that
9:23
Speaker 2: from Bella Brave after I'd you know, you realize, oh
9:30
Speaker 2: that person's got it. Oh you know all that, you
9:33
Speaker 2: know looking about and stuff. So yeah, it took him
9:37
Speaker 2: seven days to be able to go the twenty four hours,
9:41
Speaker 2: and I didn't I wasn't allowed to feed him so
9:43
Speaker 2: we got to the hospital on the Thursday. I wasn't
9:45
Speaker 2: allowed to feed him till the Sunday, so it was
9:49
Speaker 2: nil by mouth that whole time. And I was like,
9:52
Speaker 2: I'm never going to be able to feed him myself.
9:54
Speaker 2: You know, we'll even take a bottle, what will happen?
9:58
Speaker 2: But good he flew. He fed straight away from me
10:04
Speaker 2: and that was it. He was great, And I actually
10:07
Speaker 2: think the feeding him helped him go that bit longer
10:12
Speaker 2: and get to the twenty four hour mark. And then
10:15
Speaker 2: it took six days for his results to come back
10:19
Speaker 2: and they were like, yes, he's got hershebrum's disease. We
10:22
Speaker 2: don't know the extent of it, we don't know what
10:27
Speaker 2: it'll entail, but he needs an operation. We're doing it tomorrow.
10:32
Speaker 2: And I was like, oh what, you know, like my baby,
10:37
Speaker 2: he can't operate on my tiny baby. But in the
10:40
Speaker 2: back of my head you know it's going to save him.
10:43
Speaker 2: So I can't say no. Just got to put your
10:48
Speaker 2: big girl pants on and be brave. So the next
10:53
Speaker 2: day he was kneel by mouth from ten o'clock because
10:56
Speaker 2: he was in at queue and they come in and
11:00
Speaker 2: his surgeon is I mean, he's an angel on Earth
11:04
Speaker 2: to us. And when we were in the room and
11:06
Speaker 2: we were allowed to ask him questions and everything, my
11:11
Speaker 2: daughter Bailey, who was eleven at the time, asked him
11:14
Speaker 2: more questions than any of us did. And there was me, Oak,
11:18
Speaker 2: his dad's grandparents Auntie, all in the room and he
11:22
Speaker 2: sat with her and told her more in a like
11:27
Speaker 2: a not a shortened version, but a way that she
11:31
Speaker 2: would explain, which that in turn helped me just listening
11:35
Speaker 2: to that. And you know, he said he might come
11:38
Speaker 2: out with a stormer, he might come out cup from
11:41
Speaker 2: here to here, that way to that way. We just
11:44
Speaker 2: don't know. But you won't know till he comes out.
11:48
Speaker 2: And I was like, right, you know whatever, just save him.
11:51
Speaker 2: If it's going to save his life, just do it. Yeah,
11:54
Speaker 2: he'll go into intensive care. So he was in the
11:59
Speaker 2: five half hours. Turns out he's got a short segment.
12:03
Speaker 2: The took ten centimeters away, did the pull through perfect,
12:09
Speaker 2: he was Tom said he was the star pupil of
12:12
Speaker 2: the day, that's what he'd got. And then he went
12:17
Speaker 2: over to intensive care. We were allowed to see him
12:19
Speaker 2: straight away, and his nurse that was looking after him
12:24
Speaker 2: really laughed because he did not woke up like on
12:28
Speaker 2: the move from recovery to and as soon as I
12:31
Speaker 2: wait and there was like, how you, darling, and he
12:33
Speaker 2: went looked were right in the eye, and then she
12:36
Speaker 2: shut his eyes again, went back to sleep, and I
12:39
Speaker 2: was like, oh, but obviously not allowed to stay with
12:43
Speaker 2: them in case you fall ascape. So I was like
12:46
Speaker 2: sat on the chair like trying to keep my eyes off.
12:48
Speaker 2: I was like, I don't want to leave him. And
12:50
Speaker 2: the nurse she called Eve and she came over and
12:54
Speaker 2: she patted me on the shoulder and she was like,
12:56
Speaker 2: go and get some rest, because you know, use to
12:58
Speaker 2: him sitting there falling asleep. And he was in there
13:02
Speaker 2: for he did two nights, but it was more because
13:07
Speaker 2: or how they told us it was i'd see you
13:11
Speaker 2: are more trained on given more fine, and there's a
13:17
Speaker 2: very fine line between too little, too much, and perfect.
13:22
Speaker 2: Whereas the ward staff they've got that many children to
13:25
Speaker 2: look after, they're like, no, it's well one to two
13:31
Speaker 2: in intensive care. We don't have the capacity to monitor him.
13:37
Speaker 2: As you know, I don't know what the word is
13:41
Speaker 2: as hard. And we went back to the ward and
13:46
Speaker 2: I did actually sleep for eight hours, and I think
13:50
Speaker 2: it was just sheer exhaustion. It'd been two weeks of
13:55
Speaker 2: I had people in the day helping, but then at
13:57
Speaker 2: night time it was just me and him, and he
14:00
Speaker 2: was uncomfortable and he'd cry when I like it got
14:04
Speaker 2: too full, and it was just it was really really hard.
14:09
Speaker 2: And then he came back to the ward, but it
14:11
Speaker 2: did take him thirty six hours to poo, which that
14:16
Speaker 2: was kind of worrying me because you're not to feed
14:18
Speaker 2: them until they've had the first bowel movement. But after
14:22
Speaker 2: the first one, when they tell you you need nappers
14:27
Speaker 2: and wipes, well not wipes, cotton, they wouldn't let me
14:30
Speaker 2: use any wipes. And I realized now why because when
14:33
Speaker 2: we got home and I started using wipes, it got
14:35
Speaker 2: a saw bum warm water and cotton pads that you do.
14:40
Speaker 2: It was every ten minutes for weeks, and it was like,
14:45
Speaker 2: oh my god, is this going to be forever? And
14:49
Speaker 2: I made a comment to his surgeon at one of
14:51
Speaker 2: his check ups. I was like, God, these apples should
14:54
Speaker 2: come on prescription. Was like, well, actually you can get
14:56
Speaker 2: them on prescription, but they're not very good. And I
14:59
Speaker 2: was like oh. He was like, so just scam the
15:02
Speaker 2: backward in the panthers and we'll get one free every
15:04
Speaker 2: four packets. I was like, all right, okay, and then
15:10
Speaker 2: we were finally allowed home on the eighteenth of December.
15:14
Speaker 2: For Christmas, we had to go we did a check
15:18
Speaker 2: up on the twenty second. It was four days later
15:21
Speaker 2: we had to go back and get him checked over.
15:25
Speaker 2: Had you know, all my Christmases came at once, because
15:28
Speaker 2: that was all we wanted. We just wanted to be
15:30
Speaker 2: home for Christmas. And in the first couple of days
15:33
Speaker 2: of being in hospital, when they were talking about he's
15:36
Speaker 2: got to have an operation. If this is what it is,
15:39
Speaker 2: he's got to have this, they said, if he has
15:41
Speaker 2: an operation, you won't be home for Christmas. And we
15:44
Speaker 2: were like, oh, you know, a heartbroken, but we made
15:50
Speaker 2: it home.
15:51
Speaker 1: And then.
15:54
Speaker 2: The whole time, actually, after about a week of being
15:57
Speaker 2: at home, it was very very uncomfortable lying flat and
16:03
Speaker 2: I kept saying, no, the something not right, No, something
16:07
Speaker 2: not right. But he wasn't descended, he wasn't being sick,
16:12
Speaker 2: it wasn't having like foul smell and poo or anything.
16:17
Speaker 2: And we went through our checkup on I think it
16:21
Speaker 2: was the twentieth of January, because it was yeah, it
16:24
Speaker 2: was because it was Bareley's birthday, that's his oldest sibling's birthday.
16:28
Speaker 2: And we went for an X ray because as soon
16:31
Speaker 2: as Tom looked at him, he said, is his stomach
16:35
Speaker 2: call was like that? And me, thinking I knew everything
16:39
Speaker 2: about him, was like yeah, yes, yeah, why and he
16:42
Speaker 2: was like because it shouldn't be. And I was like, oh,
16:45
Speaker 2: it felt like, you know, world worst man, because how
16:49
Speaker 2: did I not notice. I knew there was a noise
16:52
Speaker 2: and that that he was really uncomfortable and that something
16:55
Speaker 2: mustn't be right, but I didn't realize there was anything
16:57
Speaker 2: wrong with him. And he says, I want to admit you,
17:02
Speaker 2: but I understand that it's you're so far from home
17:06
Speaker 2: and you're still going to have to wait a week
17:08
Speaker 2: for the contrast extra because we can't fit in. But
17:11
Speaker 2: I would rather you were here because I know you're
17:14
Speaker 2: going to end up here before that. And I was like, well,
17:17
Speaker 2: we'll go home, We'll see how we go a single
17:21
Speaker 2: any single change, we will come straight back lo and
17:24
Speaker 2: behold descended got rushed back over. Well, no, that's a lie.
17:30
Speaker 2: We went up to Carlisle and this was the first
17:32
Speaker 2: terrible experience we went up. I told him that were
17:40
Speaker 2: descended this is what we found out three days ago.
17:45
Speaker 2: Oh oh well, we'll just keep him in here and
17:47
Speaker 2: see how he goes. I was like, no, I would
17:49
Speaker 2: really like an X ray to make sure work. It's
17:53
Speaker 2: not different or worse or and could you ring Newcastle please?
18:01
Speaker 2: Can you ring his consultant and tell him, because he
18:03
Speaker 2: knew this was going to happen, we just didn't really
18:06
Speaker 2: know when. So they didn't do anything apart from go
18:11
Speaker 2: and ring Tom. Tom must have said to them, do
18:14
Speaker 2: him an X ray right now, and get him on
18:16
Speaker 2: an ambulance over here. So they cannulated him enery tube again,
18:22
Speaker 2: took him off for an X ray. And I said
18:24
Speaker 2: to them, I said, can I see it please? Why?
18:28
Speaker 2: Because I want to know for my own peace of
18:31
Speaker 2: mind how fast it got bad? Because it wasn't all
18:35
Speaker 2: that bad. It was just a little bit bad, is
18:38
Speaker 2: how ID had it described to me? Really, and his
18:43
Speaker 2: whole bal is there was loops, there was air pockets,
18:46
Speaker 2: there was impactions here there and everywhere. And I was
18:49
Speaker 2: that is way worse, like that is really really bad.
18:53
Speaker 2: And they must have sent it over to Newcastle, rang
18:56
Speaker 2: straight back, put him on the first ambulance, get him
18:59
Speaker 2: over here. That's not right, so rushed over and he
19:06
Speaker 2: was eight weeks old at this point. It was the
19:07
Speaker 2: twenty sixth of January, and that started to wash out
19:14
Speaker 2: again mail by mouth, and I was panicking thinking, you know,
19:21
Speaker 2: this is going to be my life, you know, as
19:26
Speaker 2: it's heart wrenching to see him the way he is,
19:30
Speaker 2: this is going to be our life, and that's no life.
19:33
Speaker 2: That's all kept thinking like, why did it have to
19:35
Speaker 2: happen to him? Why did it happen to us? You know,
19:39
Speaker 2: this is awful, it's so it's so really really hard.
19:47
Speaker 2: I can't find the word really. And again, Tom straight
19:54
Speaker 2: away came to us, and I call him Tom because
19:57
Speaker 2: that's how he presents itself to us, like he'll ring
19:59
Speaker 2: you up, Hi, Magan, It's just Tom, And I'm like,
20:02
Speaker 2: oh Hi. He came to us and he was like, right,
20:09
Speaker 2: contrast sexual tomorrow. I've squeezedin EU way the day after, right,
20:16
Speaker 2: that's fine. He was like, I spoke to our whole
20:19
Speaker 2: team and this is when they said four six stormer.
20:23
Speaker 2: Three of us say not. But he was actually, UC
20:27
Speaker 2: is gonna need a stormer. So he walked us through
20:30
Speaker 2: what that would look like and how it would be
20:33
Speaker 2: reversed in maybe two years, giving his bow time to
20:36
Speaker 2: rest and go from there try to pull through again,
20:41
Speaker 2: which instantly you like, oh my god, what I've never
20:46
Speaker 2: dealt with the stormer. I don't know what I'm doing.
20:48
Speaker 2: I can't care for that. I'm a dairy farmer, you know,
20:52
Speaker 2: I don't do humans. What am I going to do?
20:58
Speaker 2: So when we did the contrast sextually, we couldn't really
21:00
Speaker 2: find anything apart from a small tightening at the bottom
21:04
Speaker 2: of his sphincter muscle. And he says, oh, that's not
21:09
Speaker 2: consistent with how bad it got. Definitely, So man, I'm like,
21:14
Speaker 2: oh god, oh, this is scary. So when they took
21:20
Speaker 2: him down to the theater for the EU Way, he says, again,
21:26
Speaker 2: it'll come out how he comes out. But that's it.
21:30
Speaker 2: There's nothing you can do. We can't tell you until
21:34
Speaker 2: we've done it. And we took him down to the theater,
21:39
Speaker 2: and that's heartrenching in itself, you know, handing your baby
21:43
Speaker 2: over to somebody, and it's like, oh, but we went
21:48
Speaker 2: downstairs to the shop, went outside for some fresh air.
21:51
Speaker 2: Would have been no longer than ten minutes, and we
21:55
Speaker 2: were walking back in the room and I shut the
21:57
Speaker 2: door and then the door opened straight away and he
21:59
Speaker 2: was like, hey, we're finished. And as he was saying
22:03
Speaker 2: we're finished, I went, what are you doing here? We
22:06
Speaker 2: where's luckily and he's like, we've given battoks. I was
22:10
Speaker 2: like right, He's like, come on in recovery, come with me.
22:14
Speaker 2: So we went and seen him, got him out, fetch
22:17
Speaker 2: him back after kind of half an hour is ish,
22:21
Speaker 2: and when they came and said, he says, we can't
22:25
Speaker 2: find what's wrong, but everything actually looks okay. So we've
22:29
Speaker 2: give him the balltoks, but he's staying in for a
22:31
Speaker 2: week so we can make sure it's working. And it
22:36
Speaker 2: worked straight away as soon as he was back awake,
22:40
Speaker 2: and it fed. It was like back to the start
22:44
Speaker 2: of you know, it was every ten minutes and touch wood.
22:50
Speaker 2: That's been the last major pooley and he's thrived since
22:58
Speaker 2: he's jumped the centiles. He was on the zero centaile
23:03
Speaker 2: on the chart when he was born. I mean, he
23:06
Speaker 2: didn't even fit his skin, you know, the skin on
23:10
Speaker 2: his legs hung, and his arms the hung, and it
23:14
Speaker 2: was so sad to see and now is like eighty
23:22
Speaker 2: six centimeters. It's too stone and it's just the happiest,
23:28
Speaker 2: funniest little nineteen months old kid ever. And we have
23:35
Speaker 2: had a couple of instances of like the sickness bug
23:40
Speaker 2: stuff was really bad with the consolitess and that's from
23:43
Speaker 2: me because I had to have mine now. But the
23:45
Speaker 2: ton slightest does aggravate his bowed, which that was when
23:52
Speaker 2: I was told Ingnernie that I was an overbearing mother
23:55
Speaker 2: and all children get poorly. That was at our local
24:00
Speaker 2: Annie and up to now we've had no more major poolies,
24:09
Speaker 2: and we have had the sickness book twice. And I
24:13
Speaker 2: did take him to our actual GP practice. They are
24:19
Speaker 2: really good, the Ring Newcastle, and they say this is
24:22
Speaker 2: what's happening. What do you want us to do. And
24:25
Speaker 2: they'll say, oh, this antibiotic, that antibiotic, leave him for
24:29
Speaker 2: a few days and see what happens or whatever their
24:32
Speaker 2: plan is. The GP asks them and does what they say,
24:38
Speaker 2: and luckily we've had no really bad, you know, entercolitises
24:46
Speaker 2: or anything apart from the next big thing is what
24:52
Speaker 2: Tom said is party training because boys hold it in
24:58
Speaker 2: and that's really not good. Yeah, so that's kind of
25:04
Speaker 2: my next big worry. But then I'm also kind of
25:09
Speaker 2: not worried because he's already telling me or I need
25:13
Speaker 2: the toilet or a pool, or I'm doing away, which
25:16
Speaker 2: is really good for his age, really really good. I
25:20
Speaker 2: just don't want him to be like, oh, I'm scared
25:23
Speaker 2: of the toilet, let's hold that in. So yeah, it's uh.
25:30
Speaker 2: I think we're a good story out of so many
25:35
Speaker 2: bad And I want to tell his story because I've
25:39
Speaker 2: been the frightened mum where I thought, oh my god,
25:44
Speaker 2: at some point he's going to die because of this,
25:46
Speaker 2: and he's so poorly now, and are we ever going
25:49
Speaker 2: to get some happy days? And I wish I had
25:55
Speaker 2: somebody then that was me now to say it's going
25:59
Speaker 2: to be okay. You know, there can be good out
26:03
Speaker 2: of it. You know, not every story is awful, and
26:07
Speaker 2: I feel heart sorry for people that are, but as
26:12
Speaker 2: a newly diagnosed, terrified child and mum, I just I
26:17
Speaker 2: wanted somebody that's me now to be like, well, look
26:20
Speaker 2: at Aakley. He's absolutely thriving. You know, Yes, something's bother him,
26:26
Speaker 2: some foods bother him, but he is happy, is not ill,
26:31
Speaker 2: And nobody would even know that there was anything wrong
26:33
Speaker 2: with him, that doesn't know.
26:34
Speaker 1: Him, no, And I am what a what a story
26:40
Speaker 1: first of all so far, but and I really appreciate
26:44
Speaker 1: you coming on as well, because, like you said, there
26:46
Speaker 1: will be people listening to this. Yeah, well, there will
26:49
Speaker 1: be people who listen to this in the future that
26:53
Speaker 1: have been in your position, you know, a month, two
26:56
Speaker 1: months down the line and going, you know, what what
27:02
Speaker 1: is next? You know? I mean there's there's some parts
27:05
Speaker 1: of that story that you brought up with. They're mentioning
27:08
Speaker 1: the term Hirshprung's disease. They're saying wash out. I mean,
27:12
Speaker 1: without knowing what Hirshprungs is, without knowing what a wash
27:16
Speaker 1: out is, how would you ever know? It's just you know,
27:21
Speaker 1: and like you said, they're going to wash my baby?
27:23
Speaker 1: Why are they washing my baby?
27:24
Speaker 2: You know?
27:25
Speaker 1: And but that made total sense because why would you
27:28
Speaker 1: know what a wash out is? You know? And it's yeah,
27:33
Speaker 1: it's it's But there'll be people listening to this that
27:37
Speaker 1: will be in that same situation that will be thinking,
27:41
Speaker 1: although there is light at the end of the tunnel.
27:43
Speaker 2: Yeah yeah, and that tunnel seems so long, like it's
27:50
Speaker 2: never ending, and then all of a sudden, Yeah, I've
27:56
Speaker 2: actually thought to myself, hang on, I need to stop
28:01
Speaker 2: thinking negatively look at him, like like when he was
28:07
Speaker 2: six months old and we were going on holiday, I
28:09
Speaker 2: was so terrified, thinking, it's going to get pooly when
28:13
Speaker 2: we're away. What we're going to do, you know, And
28:16
Speaker 2: actually nothing happened. And that's when I first started thinking, Oh,
28:22
Speaker 2: we are actually okay. You know, he's okay, he's happy.
28:27
Speaker 2: Look at him flying around the pool with his brothers
28:29
Speaker 2: and sisters, and it's just Yeah, that was my kind
28:36
Speaker 2: of awakening of there's light at this I'm at the
28:38
Speaker 2: end of that tunnel now.
28:40
Speaker 1: Yeah. Absolutely, And it's is one of those conditions that
28:46
Speaker 1: that I mean is a lifelong condition. But you know
28:50
Speaker 1: that there are many success stories out there of people who,
28:54
Speaker 1: you know, maybe have a few difficult early patches, but
28:59
Speaker 1: then an interview plenty of people who are adults now
29:02
Speaker 1: who've you know, had a difficult maybe first couple of months,
29:05
Speaker 1: but actually have gone on you know, and then now
29:07
Speaker 1: in their twenties, thirties, forties, whatever, and have no complications
29:12
Speaker 1: whatever whatsoever. And that that is more than possible.
29:17
Speaker 2: Yeah, that, and I hope that, I hope that for
29:21
Speaker 2: all children with it, you know, But I feel like
29:28
Speaker 2: hearing a good story at such a young age. I'll
29:32
Speaker 2: give more parents that hope that yes, rather than by
29:36
Speaker 2: time at the minute. But it can be better, you know.
29:42
Speaker 2: And the thing I mean, the things that we've done
29:46
Speaker 2: for him since, Like to us, that hospital is god,
29:52
Speaker 2: you know, it's everything. It saved us. We've done loads
29:56
Speaker 2: of fundraising and it's just to give back. But how
30:00
Speaker 2: do you give back to people that saved your life
30:02
Speaker 2: and your son's life. You know, nothing ever feels enough.
30:07
Speaker 2: And we always say, you know, we worship the ground
30:12
Speaker 2: they walk on, but it's their everyday job.
30:18
Speaker 1: Yeah, they don't. They don't see it like that because
30:20
Speaker 1: it's their their job. They don't well maybe they don't,
30:24
Speaker 1: maybe they do, maybe they don't. I don't know, but
30:27
Speaker 1: because I guess it's normal to them to save people's lives,
30:32
Speaker 1: to operate, to chair for other people. It's it's still
30:39
Speaker 1: important obviously, and they still recognize the importance of it.
30:42
Speaker 1: But maybe maybe they're a lot more humble about it.
30:47
Speaker 1: I think.
30:49
Speaker 2: Yeah. Yeah, Like we were saying, I'm a dairy farmer
30:53
Speaker 2: by trade, you know that's and I can do anything
30:57
Speaker 2: with a cow, but come home and I don't, you know,
31:01
Speaker 2: I'm not like, oh, we have to do this on
31:03
Speaker 2: accout today and it was really interesting because it's just
31:08
Speaker 2: our normal everyday life. But to us, like to somebody
31:12
Speaker 2: else that doesn't farm, they'd be like, oh my god,
31:14
Speaker 2: that is amazing, you know. And I feel like it's
31:18
Speaker 2: the same with all these surgeons in anything they do.
31:22
Speaker 2: But I feel like people that operate on children must
31:27
Speaker 2: be like I saved them. But then they're still go
31:32
Speaker 2: home and they're just sitting eat the tea and they're like, oh,
31:35
Speaker 2: I did three operations today, all right, did you Yeah,
31:39
Speaker 2: It's just normal.
31:41
Speaker 1: Yeah. But to Wis, it's the worlds it is it is.
31:44
Speaker 1: But but speaking of doing things for others and helping
31:49
Speaker 1: other people, you've also been involved in the Every Step
31:54
Speaker 1: campaign as well. Would you like to talk a little
31:58
Speaker 1: bit about that.
32:01
Speaker 2: The Newcastle Hospital's charity and it is all of the hospitals.
32:06
Speaker 2: It's not just the RVI, it's the Freemen. Kramlin and
32:10
Speaker 2: I think and it could be James Cook, but that
32:14
Speaker 2: isn't gospel truth off me because I'm not sure got
32:19
Speaker 2: in touch with us last mate and asked if Oakley
32:23
Speaker 2: wanted to be part of the Every Step campaign, would
32:27
Speaker 2: we go over have his frootprints taken and they would
32:31
Speaker 2: be used as the promotion for it, and I was like, yep,
32:36
Speaker 2: you know anything. So we went over for the day
32:40
Speaker 2: and all of them, all our my kids, got to
32:45
Speaker 2: have the footprints taken. So there's Bareley who's my oldest lady,
32:50
Speaker 2: and Alphae Andrew's older too, and Oakley And when they
32:55
Speaker 2: explained to us what it was, it meant so much
32:59
Speaker 2: to us because the whole campaign is every step of
33:03
Speaker 2: your journey from walking in to the Newcastle Hospital right
33:11
Speaker 2: through from your diagnosis, your treatment, your after care right through.
33:17
Speaker 2: They are there every step of the way, no matter what,
33:22
Speaker 2: and that is exactly what we've experienced as a family.
33:27
Speaker 2: There's been times where when we've been at home, I've
33:32
Speaker 2: had to ring up and ask what I think is
33:34
Speaker 2: a silly question, but it isn't. There was times on
33:39
Speaker 2: a nighttime where I was so upset in the room
33:42
Speaker 2: on my own after everybody had gone home, and the
33:45
Speaker 2: nurses would just come and sit and talk with us,
33:48
Speaker 2: explain everything. They took the time to get to know
33:52
Speaker 2: our family, our family's interests, what they did, you know,
33:57
Speaker 2: even when we were in there, all the nurses, it's
34:00
Speaker 2: got Bailly and Lady and Alfie to paint the ward
34:02
Speaker 2: windows for Christmas, you know, and right from the moment
34:07
Speaker 2: we walked over that doorstep, they are there at any
34:12
Speaker 2: given moment, and that is exactly what the Every Step
34:15
Speaker 2: campaign stands for, and it's what they want every patient
34:21
Speaker 2: and every family to feel. And if they feel like
34:26
Speaker 2: we do, that is the campaign, you know, down in
34:31
Speaker 2: a hole. And it is absolutely amazing how they just
34:39
Speaker 2: and they never forget you either, do you know. It's like, yes,
34:45
Speaker 2: we were in nineteen months ago for a month, but
34:50
Speaker 2: if I need to ring the ward for something, or
34:53
Speaker 2: I've got like I've rang up about his injections for instance,
34:57
Speaker 2: because I didn't know whether I could just give him
34:59
Speaker 2: his next ones are a needed it confirmed and it
35:04
Speaker 2: was my favorite nurse Kim and was like, is that
35:07
Speaker 2: your wagon? I thought it was your voice and I'm like, oh,
35:12
Speaker 2: you know, they just remember it and that is everything
35:16
Speaker 2: that Every Step represents. They want you to feel, you know,
35:25
Speaker 2: looked after and put your trust in them through the
35:30
Speaker 2: whole thing. And it's amazing and I can't believe that
35:35
Speaker 2: we got to do the promotion for it but also
35:39
Speaker 2: experience it as well. And when we went and got
35:42
Speaker 2: the footprints taken. There's so many kids in that room
35:47
Speaker 2: that we're also doing it and had so many different journeys.
35:52
Speaker 2: You know, there was cancer patients, there was children with
35:56
Speaker 2: just disabilities that you and we didn't really know what
35:59
Speaker 2: was wrong with them. But and everyone is just treat
36:04
Speaker 2: like Graylty and that I feel like that's how it
36:07
Speaker 2: should be.
36:09
Speaker 1: Yeah, I mean, that's that's that's brilliant. And it must
36:13
Speaker 1: I mean, no matter what you're you're going through the time,
36:18
Speaker 1: it must feel well, I know from my own personal experience,
36:22
Speaker 1: how how how good it feels when people they might
36:27
Speaker 1: not understand everything that you're going through, but they know
36:30
Speaker 1: who you are, you know, and and you're valued as
36:34
Speaker 1: a human being rather than just patient three oh seven five,
36:39
Speaker 1: you know, and that that must be Oh I know
36:44
Speaker 1: myself that that that is that is worth a lot,
36:47
Speaker 1: I guess, isn't it.
36:49
Speaker 2: Yeah it is? Yeah.
36:50
Speaker 1: Yeah.
36:52
Speaker 2: Like when we were in both times that we had
36:57
Speaker 2: kind of a long stint when we were leaving, the
37:04
Speaker 2: nurses on the wardrobe set two and they were like,
37:08
Speaker 2: we've got to see him before we go, Like, please
37:10
Speaker 2: don't go until we've come and sing ye and it's
37:12
Speaker 2: like it's not just like right, need that room. You're
37:16
Speaker 2: out today, and that is everything because you know that
37:22
Speaker 2: they have put their all into caring for your child,
37:25
Speaker 2: no matter what's wrong with them, could be hurt like
37:28
Speaker 2: there was on our ward. There's so many different things,
37:32
Speaker 2: like there was a little boy in that Barey had
37:35
Speaker 2: made friends with is they ordered burst and it's like, wow,
37:42
Speaker 2: you get the you know, to us that would be
37:45
Speaker 2: you get the special treatment, because that is huge, but
37:50
Speaker 2: we all get that special treatment in our own way,
37:54
Speaker 2: tailored to you and your family. And it's like everything,
37:59
Speaker 2: the whole thing that right from going into coming out
38:06
Speaker 2: and even going back for check ups. Now everyone's like,
38:08
Speaker 2: oh h yeah, yeah, it's just amazing, absolutely amazing. You're not,
38:14
Speaker 2: like you said, you're not just a number.
38:17
Speaker 1: Yeah yeah, and that's going to be that's got to
38:20
Speaker 1: be worth a heck of a lot. I mean, it's
38:23
Speaker 1: especially when you you know, when you're going through what
38:26
Speaker 1: can be quite an uncertain time. I mean, especially especially
38:30
Speaker 1: as we talked about right at the start, especially with
38:33
Speaker 1: being rare disease. You know, I said, you've got lots
38:35
Speaker 1: of children on the ward. Chances are you've probably not
38:39
Speaker 1: got anybody else there with hirshprungs. So it's you can
38:46
Speaker 1: feel a little bit alone to have somebody who, again
38:51
Speaker 1: might not know everything you're going through, but at least
38:53
Speaker 1: they know you. They know Oakley, you know, they know
38:56
Speaker 1: what Oakley has. You know, at least you've got you
39:00
Speaker 1: got somebody there who's supporting you. I guess yeah.
39:06
Speaker 2: When they were doing his washouts and I was like,
39:11
Speaker 2: this is wild. What I liked was even anything even
39:17
Speaker 2: your student nurse right to your ward's sister knew how
39:23
Speaker 2: to do that procedure, who needed that procedure and what
39:29
Speaker 2: it entailed. There was no all you'll have to wait
39:33
Speaker 2: because we don't have such and such. Everybody knew everything
39:38
Speaker 2: at what time. And people had come in and been like,
39:42
Speaker 2: as Akay had his wash out, I've just been on
39:45
Speaker 2: my brain. Oh you know, everybody knew. And they explained
39:49
Speaker 2: to us things like that are kind of their bread
39:53
Speaker 2: and butter on the ward wash out because it actually
39:58
Speaker 2: you can get a wash out for a lot of
39:59
Speaker 2: reasons upon not just Hirshbrums and Stormers. It was our
40:09
Speaker 2: ward bread and butter, and that's what they said. So
40:11
Speaker 2: everybody knows how to do everything and when everybody needs it,
40:15
Speaker 2: and that kind of made you feel a bit better,
40:18
Speaker 2: But then you still didn't know who had what if
40:24
Speaker 2: that makes sense, you know, but you knew that they
40:29
Speaker 2: knew what they were doing so they could tell you
40:32
Speaker 2: about it, and that made you put me at ease
40:36
Speaker 2: and the rest of the family, and obviously you trusted
40:39
Speaker 2: them to do it.
40:41
Speaker 1: Yeah. Yeah, I mean the confidence as well is so
40:46
Speaker 1: important to have confidence in people because they're looking after,
40:51
Speaker 1: you know, the most precious thing in the world to
40:54
Speaker 1: your child, you know, So to have one hundred percent
40:57
Speaker 1: confidence in the fact that you know they know what
40:59
Speaker 1: they doing, they know when they're doing it. They're not
41:02
Speaker 1: running around going oh, what's this happening? Or we need
41:04
Speaker 1: to get so and so and all of that, like
41:06
Speaker 1: you said, you know, and they're checking in on you
41:09
Speaker 1: as a person rather than just a patient as well,
41:14
Speaker 1: and they know what's going on. Again that that's got
41:17
Speaker 1: to be You've got, you know, so many things going on,
41:22
Speaker 1: like you said, through your head about not knowing this
41:25
Speaker 1: this is going to happen? Is that going to happen?
41:27
Speaker 1: There's all manner of techniques and phrases and terminology being
41:34
Speaker 1: thrown at you. Like with everyone with Hirshbrung's, you've got
41:37
Speaker 1: to learn everything so fast. Things that you didn't even
41:42
Speaker 1: know existed twenty four hours ago. Suddenly you've got to
41:44
Speaker 1: know all of it and very quickly. Either yes, they've
41:53
Speaker 1: learned it from yeah, yeah, I mean it's it's interesting.
41:57
Speaker 1: So because with the that they went to or told
42:00
Speaker 1: you to look at the Sydney page as well, which yeah,
42:08
Speaker 1: which that's not one I've really come across before.
42:13
Speaker 2: So we are said, how come that one? And it
42:20
Speaker 2: wasn't actually Awkary surgeon, it was but part of his
42:23
Speaker 2: king he says, because I've worked I worked there for
42:26
Speaker 2: nine years, and it says, but actually since I've came back,
42:33
Speaker 2: when I look for things to tell parents to look at,
42:39
Speaker 2: it says, I haven't actually found anything better. So that's
42:43
Speaker 2: why I say, you know, personal experience again, which ties
42:48
Speaker 2: into the every step is worked there. He knows what
42:52
Speaker 2: they know, and he hasn't found anything better on the internet.
42:58
Speaker 2: And actually when you do try and look for things,
43:03
Speaker 2: it's sort a good story or a good explanation of it.
43:09
Speaker 2: It's so a few and far between, no wondery. It's like
43:15
Speaker 2: look on there, look on there.
43:17
Speaker 1: Yeah, that makes sense, that doesn't make sense. I mean
43:20
Speaker 1: hopefully hopefully in time people will sort of be directed
43:26
Speaker 1: maybe to the Hirsprung's UK website because that's that's full
43:32
Speaker 1: of stories and there's some good stories on there, but
43:34
Speaker 1: also it's it's UK centric information, which when you look
43:39
Speaker 1: at American sites or you look at Australian sites or whatever.
43:43
Speaker 1: Canadian they can be a little bit different because of
43:46
Speaker 1: their medical system is obviously different to ours. So hopefully
43:52
Speaker 1: in time, but that's going to take, you know, quite
43:55
Speaker 1: a while before people are sort of directed I guess to.
43:59
Speaker 2: Well when when we've looked the herd from UK has
44:04
Speaker 2: never just came up what things following you and it
44:09
Speaker 2: being on your page and stuff. We've looked through it
44:14
Speaker 2: quite often. Actually, you know, if we thought, you know,
44:18
Speaker 2: we thought for the chicken pox, what do you do
44:22
Speaker 2: about the chicken pox? Looked on there? There was nothing
44:26
Speaker 2: on there about it as in bad stories. So we're like,
44:30
Speaker 2: all right, we'll go and ask Tom about it. Then,
44:33
Speaker 2: you know, before ringing the ward or ringing him for
44:36
Speaker 2: the answer, we're now checking to their first to look
44:40
Speaker 2: for things.
44:42
Speaker 1: So hopefully.
44:45
Speaker 2: That like you say, it will be everyone will get
44:49
Speaker 2: directed to there before anywhere.
44:52
Speaker 1: Else, hopefully, hopefully and hopefully in time, but no, this
44:58
Speaker 1: would brilliant. Thank you so so much for coming on.
45:01
Speaker 1: And just just finally, I know you said that Oakley's
45:04
Speaker 1: doing really well now, which is great, which is so
45:08
Speaker 1: so good to hear. In terms of sort of the
45:11
Speaker 1: future for him, what do you hope.
45:17
Speaker 2: I hope that he is well enough to you know,
45:28
Speaker 2: not have accidents at school and stuff like that. But
45:34
Speaker 2: I hope he grows up and achieves anything and everything
45:38
Speaker 2: he wants to achieve. You know, living proof agreed on
45:44
Speaker 2: a piece of paper doesn't define your future. Because my
45:47
Speaker 2: grades at Skill were horrendous and I have done six
45:54
Speaker 2: years at Agricultural University, passed it all with flying colors,
46:00
Speaker 2: twenty years experiencing it under my belt now, although I
46:05
Speaker 2: don't look at day over twenty one obviously, and that's
46:11
Speaker 2: all I want for him to be able to go
46:14
Speaker 2: ahead and whether he I mean, he is really clever,
46:19
Speaker 2: whether it's academically clever, you know, working clever, whatever he
46:24
Speaker 2: chooses to do, I want him to grab it with
46:27
Speaker 2: both hands. Because there was a day there where we
46:32
Speaker 2: couldn't even see his future. The days that we're living
46:37
Speaker 2: now and for the rest of his life, of everything
46:40
Speaker 2: we wished for in that moment when that nurse said
46:43
Speaker 2: to me, if he makes it off the ambulance beauty threat,
46:49
Speaker 2: anything he does, I'll be the crowd man like Hirstprungs
46:55
Speaker 2: can't stop.
46:55
Speaker 1: You exactly exactly. That is wonderfully put and a fantastic
47:01
Speaker 1: sentiment to finish on. And I wish Ukly, yourself and
47:05
Speaker 1: the rest of your family all the very very best
47:07
Speaker 1: for the future. Thank you so much for coming on.
47:10
Speaker 2: Thank you very much for having me.
47:14
Speaker 1: Thank you for listening and being part of this growing community.
47:17
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
47:20
Speaker 1: leave a review, and share it with someone who might
47:22
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47:25
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
47:31
Speaker 1: See you next week.