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Episode 145 - With Shabana · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
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Speaker 1: we talk openly about living with Hirschsprungs 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
0:22
Speaker 1: tuning in. Hello and welcome to episode 145 of Tom's
0:49
Speaker 1: Hirschsprung podcast. I'm very glad this evening to be joined
0:53
Speaker 1: by Shabana. Shabana, welcome.
0:54
Speaker 2: Hi, Tom.
0:56
Speaker 1: Thanks so much for coming on. Now, we are here
0:59
Speaker 1: to talk about another Hirschsprung story. Very interesting Hirschsprung story
1:04
Speaker 1: that I'm really looking forward to delving into a little deeper.
1:09
Speaker 1: But over to you.
1:10
Speaker 2: Yep. So it's not me personally, obviously, who's got the
1:15
Speaker 2: Hirschsprung disease. It's my little boy who is now three.
1:18
Speaker 2: He'll be four in January next year. So he was
1:24
Speaker 2: born full term, healthy baby. He had a bit of
1:29
Speaker 2: breathing difficulties when he was born, but nothing major. So
1:33
Speaker 2: they kept him in. But other than that, the first
1:36
Speaker 2: six months of his life, perfectly fine, opening his bowels
1:41
Speaker 2: and then So he was born January 2023. July 2023,
1:45
Speaker 2: he literally just stopped opening his bowels. And at first
1:50
Speaker 2: I did maybe think it was maybe constipation because I
1:53
Speaker 2: started weaning him as well. So I did put it
1:55
Speaker 2: down to that first, but it went on for like
1:57
Speaker 2: a week and I thought, right, this is not normal.
2:00
Speaker 2: So I went to the GP as you do. GP
2:04
Speaker 2: did some physical examination, said it was fine just to
2:08
Speaker 2: try some Movicol and different constipation medicines went back home
2:14
Speaker 2: tried tried that didn't work um and then we tried
2:18
Speaker 2: to do like tummy massages just to kind of help
2:21
Speaker 2: the stomach going then you know just getting the legs
2:23
Speaker 2: and kind of pushing them upwards towards the stomach if
2:25
Speaker 2: it was constipation he used to relieve himself maybe once
2:29
Speaker 2: a month uh and when he did it was horrendous
2:33
Speaker 2: like it was awful so I went back again I
2:34
Speaker 2: said this is just not normal it's it's it's just
2:38
Speaker 2: the smell was horrendous The whole thing was awful to
2:40
Speaker 2: deal with. Went back to the GP again. Again, she
2:43
Speaker 2: kept saying it was viral. And I was like, it's
2:45
Speaker 2: not viral. Because he kept getting a temperature with... He
2:49
Speaker 2: kept getting ill as well every month. So even having
2:52
Speaker 2: the constipation, he was very ill. So he had a
2:55
Speaker 2: high temperature. Very lethargic. And again, they put it down
2:59
Speaker 2: to viral. And I said, you ignore him having the temperature.
3:03
Speaker 2: Concentrate on him not opening his bowels. That can't be viral.
3:09
Speaker 2: That can't be passed on. So yeah. So anyways, so July, August, September, October,
3:17
Speaker 2: I'm going back and forth. I went to a hospital
3:20
Speaker 2: in October near my house. I'm from Manchester. So we
3:23
Speaker 2: went to a local hospital in Manchester. And again, actually,
3:28
Speaker 2: he got blue lighted to this hospital. I had to
3:30
Speaker 2: call the ambulance because he went so lethargic. I panicked.
3:33
Speaker 2: It's like he was just floppy. So me and my
3:36
Speaker 2: husband both panicked. Call 111. got the ambulance, got blue
3:40
Speaker 2: lighted to the hospital. And again, they were like, oh,
3:43
Speaker 2: he's just dehydrated. Did a few little checks. Kept us,
3:48
Speaker 2: I think, overnight. But we kind of left at night.
3:50
Speaker 2: I thought, you're not actually physically going to do anything here.
3:54
Speaker 2: So we left. We went back again the next morning
3:56
Speaker 2: because it was the same situation. Again, waiting hours and hours.
4:01
Speaker 2: Consultant came and seen him. Again, kind of got fobbed
4:04
Speaker 2: off saying it's nothing. You know, he'll be fine. Then
4:08
Speaker 2: we went to the Manchester Children's Hospital, which is a
4:12
Speaker 2: very popular hospital in Manchester, and waiting there for a
4:16
Speaker 2: few hours. So this was in November 2023 now. Again,
4:20
Speaker 2: he was poorly constipated, lethargic. A consultant came, told her
4:26
Speaker 2: what happened. At first, she was going to go down
4:29
Speaker 2: the line to say, you know what, I think it is,
4:33
Speaker 2: you know, something just going ground. And I was like, no, no.
4:36
Speaker 2: you're not listening to me. At this point, I was like, right,
4:38
Speaker 2: that is it. But when she did a physical examination,
4:41
Speaker 2: she could see that his stomach was distended and she
4:43
Speaker 2: was like, you know what, mum, I think you're right.
4:45
Speaker 2: And just hearing them words, mum, I think you're right,
4:48
Speaker 2: was just such a relief. Because that's all I wanted
4:52
Speaker 2: someone to say, like, you know what, actually, maybe you
4:54
Speaker 2: are right. There is something else going on with him.
4:57
Speaker 2: And from that point onwards, it was literally scans, bloods,
5:02
Speaker 2: everyone was running around. They started putting pipes on him
5:05
Speaker 2: and needles everywhere. That made me frantic thinking what's going on.
5:10
Speaker 2: So when they did the scan, they thought that he
5:12
Speaker 2: had like a twist in his bowels, but they weren't
5:13
Speaker 2: quite sure what it was. So another senior consultant then
5:17
Speaker 2: came and kind of explained that it doesn't look like
5:19
Speaker 2: a kink in his bowel, but something is going on there.
5:22
Speaker 2: We'll have to do a biopsy. So in then December time,
5:25
Speaker 2: we got booked in to do a biopsy and it
5:28
Speaker 2: was Christmas time. So obviously everything was kind of closed, open.
5:32
Speaker 2: with the Christmas period so we didn't expect to get
5:34
Speaker 2: a response like that quick anyway come January 2024 we
5:38
Speaker 2: got told that the biopsy was inconclusive so we had
5:42
Speaker 2: to do another biopsy um which was in January um
5:46
Speaker 2: so that happened pretty much straight away uh but just
5:49
Speaker 2: seeing him go through the whole thing again was not
5:51
Speaker 2: nice um so he turned one at this point so
5:54
Speaker 2: from six months he's now one years old and he
5:56
Speaker 2: finally got diagnosed at one that it's hurt spring disease
6:00
Speaker 2: so all They did tell me that it could be
6:03
Speaker 2: three things, either celiac disease, I think it's called, and
6:07
Speaker 2: Hirsprung disease or something else, which I didn't know the
6:10
Speaker 2: name of. But when I researched everything, I thought, right,
6:12
Speaker 2: the Hirsprung disease looks like the more going towards what
6:16
Speaker 2: he's going through. So when they confirmed, obviously, it was
6:19
Speaker 2: a relief that I kind of know now, OK, fine, finally,
6:22
Speaker 2: we've got a diagnosis. We know there is something wrong
6:24
Speaker 2: with him and we can now go forward. with how
6:27
Speaker 2: to deal with this situation. So at this point, when
6:31
Speaker 2: we were told, we obviously had got explained that you'll
6:34
Speaker 2: have to have a stoma bag, a pull-through surgery, then
6:37
Speaker 2: a reversal of the stoma bag. Didn't know any timeframes
6:41
Speaker 2: of how long this will all take. But yeah, at
6:45
Speaker 2: that point, when we got diagnosed in January 2023, we
6:50
Speaker 2: had to then do physical washouts. So with a pipe,
6:55
Speaker 2: saline water, physically help him relieve himself and empty his
7:00
Speaker 2: bowels as much as we could. He was a lot
7:02
Speaker 2: younger then, so he couldn't walk, but he could kick
7:05
Speaker 2: and scream. My husband helped me. It was just, we
7:07
Speaker 2: had to physically and mentally prepare ourselves for these washouts,
7:12
Speaker 2: which wasn't nice, but it's to help him, obviously. So
7:15
Speaker 2: we had to do what we had to do. And
7:18
Speaker 2: then we got booked in for a stoma bag in
7:21
Speaker 2: April 2024. So he had his stoma done and when
7:26
Speaker 2: he came back from surgery which took about I think
7:29
Speaker 2: three to four hours so it wasn't too long but
7:31
Speaker 2: when he came back he was very unwell so the
7:34
Speaker 2: stomach wasn't actually working and they said when they put
7:37
Speaker 2: his his intestines back in I think they think there's
7:41
Speaker 2: a kink somewhere so they had to do an x-ray
7:43
Speaker 2: and there was an actual twist so they had to
7:46
Speaker 2: reopen him undo the twist and put everything back in
7:52
Speaker 2: and then do another stoma on him. So he had
7:54
Speaker 2: an emergency one after like two days. So the space
7:57
Speaker 2: of like two days, he's had two operations. I can
8:01
Speaker 2: imagine how I felt when I heard they had to
8:03
Speaker 2: redo his operation again. So yeah, it was a very
8:08
Speaker 2: emotional ride. I was just seeing him put to sleep,
8:10
Speaker 2: then waking up in so much pain. He was on
8:12
Speaker 2: so much medicines, morphine, you know, he was completely out
8:15
Speaker 2: of it. And then seeing the stoma for the first time,
8:20
Speaker 2: I don't want to say we were scared. Obviously, we
8:22
Speaker 2: knew what it was going to look like because we
8:24
Speaker 2: kind of Googled what it would look like anyway. But
8:27
Speaker 2: to see that on your child, I think it is quite,
8:29
Speaker 2: you know, it does take you back a bit. But he,
8:33
Speaker 2: you know, he was... When he did finally come around
8:35
Speaker 2: and start eating a little bit, you know, he seemed
8:37
Speaker 2: okay and he didn't... He did look at it, obviously,
8:39
Speaker 2: thinking like, what is this on me? Because at that point,
8:42
Speaker 2: he was only young. He was only like one year
8:44
Speaker 2: and like four months. But yeah, so we come home.
8:48
Speaker 2: We were in the hospital. We got trained, obviously, how
8:50
Speaker 2: to change the stoma bag and everything like that, how
8:53
Speaker 2: to cut it. So we got used to, obviously, that
8:56
Speaker 2: kind of life. I didn't really go out much when
8:59
Speaker 2: he had a stoma bag because it used to leak.
9:03
Speaker 2: And being out and about with a leaked stoma bag
9:05
Speaker 2: is just not the way. for me anyway I just
9:08
Speaker 2: thought it's too much to do so luckily I wasn't
9:11
Speaker 2: working at the time I was on maternity leave and
9:13
Speaker 2: I actually lost my job whilst on maternity leave because
9:15
Speaker 2: the company I worked for went into administration so I
9:19
Speaker 2: think that happened for a good reason because my son
9:23
Speaker 2: actually needed me in that time so it's good job
9:26
Speaker 2: dad didn't go back to work because all this kind
9:28
Speaker 2: of happened so He needed me full time, to be honest,
9:32
Speaker 2: for that reason. So yeah, he had a stomach bag
9:35
Speaker 2: for about a year. So yeah, he had his pull
9:40
Speaker 2: through in January 2025, which was like about nine hour operation.
9:45
Speaker 2: I think it was. It was a very long operation.
9:47
Speaker 2: Me and my husband just going back and forth in
9:49
Speaker 2: the hospital. And again, he still had the bag on
9:54
Speaker 2: even after the pull through surgery because his consultant, by
9:57
Speaker 2: the way, has been absolutely amazing throughout this. he has
10:00
Speaker 2: been absolutely amazing he's been very thorough you know even
10:05
Speaker 2: if there were delays in the surgery or you know
10:07
Speaker 2: if he didn't go ahead he was very he was
10:09
Speaker 2: just very caring he understands everything he listens to you
10:12
Speaker 2: um so he's been an absolute amazing consultant um But yeah,
10:18
Speaker 2: so he had his pull through surgery, which was long. Again,
10:22
Speaker 2: you know, seeing them in that condition, morphine, just so
10:26
Speaker 2: many drugs going in him. So yeah, once that happened,
10:31
Speaker 2: our consultant basically told us, We have to wait a
10:34
Speaker 2: couple of months just for him to heal kind of internally,
10:38
Speaker 2: let his system kind of reset, and then we'll do
10:40
Speaker 2: the reversal of the stoma bag. So he still had
10:43
Speaker 2: his bag after the pull-through surgery. And then in April 2025,
10:49
Speaker 2: the same year, so four months later, he was then
10:52
Speaker 2: booked in for the reversal of his stoma. So I
10:55
Speaker 2: was like, oh my gosh, the last time we're going
10:56
Speaker 2: to be doing his bag and, you know, all sorts.
11:00
Speaker 2: It was a bittersweet goodbye to the whole situation. Because
11:05
Speaker 2: that's all he knew. Because obviously at a young age,
11:07
Speaker 2: that's all he's seen on him. That was normal to him.
11:11
Speaker 2: So I've got two older daughters as well. And they
11:14
Speaker 2: were absolutely amazing throughout this whole thing. If I needed,
11:17
Speaker 2: you know, a piece of banana tape, they'd pass it
11:19
Speaker 2: to me. If I needed some powder, they'd help me
11:21
Speaker 2: change a stoma bag and stuff. So they were really
11:24
Speaker 2: good and they understood obviously what he's going through and
11:27
Speaker 2: what's happening. So they were really, really supportive as well
11:31
Speaker 2: as like my family and my friends as well. So
11:34
Speaker 2: once he had his reversal done, the main thing is
11:38
Speaker 2: to see if he opens his bubbles up. So we
11:40
Speaker 2: waited about three, four days, I think it was. And
11:43
Speaker 2: he actually like let out some gas for the first
11:46
Speaker 2: time because he's never done that before. It's always been
11:48
Speaker 2: in his bag. So that scared him and he started
11:51
Speaker 2: crying because he didn't know what just happened. And I
11:53
Speaker 2: was like, it's fine, it's normal. I was so happy
11:55
Speaker 2: that he did it. And then when he finally did
11:57
Speaker 2: open his bowels in the hospital, I was like, oh
12:01
Speaker 2: my God, I was celebrating with the person opposite me.
12:05
Speaker 2: I was so happy that something actually came out of
12:07
Speaker 2: his bottom. It was just a relief, obviously. Even then,
12:11
Speaker 2: going forward, I was told, you know, we don't know
12:14
Speaker 2: if he will have any control over his bowels or
12:16
Speaker 2: if he will have any sensation or any feeling. You know,
12:19
Speaker 2: there were so much more things to kind of look for.
12:22
Speaker 2: But I was just glad that he was doing something.
12:26
Speaker 2: So once he came home with his reversal done, obviously
12:31
Speaker 2: he's got a scar on his stomach and under his
12:33
Speaker 2: belly button, which has healed very well, to be fair.
12:36
Speaker 2: It's not bad. Um, but yeah, then I started looking
12:39
Speaker 2: into like just food, what to give him, what to
12:42
Speaker 2: feed him to help him, like, you know, not be
12:44
Speaker 2: constipated because even then it's still a journey. It's not
12:47
Speaker 2: just the end. It's still something in the background going on.
12:51
Speaker 2: So I started off with like fiber foods, uh, making
12:54
Speaker 2: sure I was quite strict in the beginning. Then I thought,
12:55
Speaker 2: do you know what? I should mix it up because
12:57
Speaker 2: I just don't want his body just to rely on
12:59
Speaker 2: them sort of foods then. Um, so I did mix
13:02
Speaker 2: it up. So, you know, like chia seeds and it's
13:04
Speaker 2: like milk or something and you're just little, little things.
13:07
Speaker 2: brown rice or wholemeal bread or pasta and stuff like that.
13:11
Speaker 2: So I started mixing it up and it's been, what,
13:15
Speaker 2: a year now since everything's happened. And I think we've
13:19
Speaker 2: only been back to the hospital maybe twice where we
13:22
Speaker 2: thought he maybe has enterocolitis. So the first time was
13:25
Speaker 2: actually tonsillitis, which made him kind of shut down. Because
13:31
Speaker 2: we were basically told if he doesn't open his bowels
13:33
Speaker 2: for more than three days, and you've tried everything at home,
13:37
Speaker 2: as in suppositories or whatever, and you've got a very
13:39
Speaker 2: high temperature, straight away just bring him in to A
13:42
Speaker 2: & E. I've got like a little card made, like
13:45
Speaker 2: an emergency intracolitis card, so I don't have to waffle
13:48
Speaker 2: in the hospital. I can just show the card to
13:50
Speaker 2: them so it explains what it is, which is really
13:52
Speaker 2: helpful to be honest. I've used that twice now, and
13:54
Speaker 2: it has been. It's prompted the surgeons to come down quickly.
13:58
Speaker 2: So the first time we went, they put it down
14:00
Speaker 2: to tonsillitis rather than intracolitis, which was good. The second time,
14:05
Speaker 2: he didn't open his bowels for about, I think it
14:09
Speaker 2: was three, four days, but he was fine within himself,
14:12
Speaker 2: but he just didn't open his bowels. Obviously, that worried me.
14:15
Speaker 2: And again, they just said trispository might help. So I
14:19
Speaker 2: tried it twice and then eventually it worked. But from
14:23
Speaker 2: that day on until now, he has been really good.
14:27
Speaker 2: We've started toilet training a couple of months ago because
14:31
Speaker 2: my first Worry was then, oh God, does he have
14:34
Speaker 2: any feeling? Does he know how to control it? Does
14:37
Speaker 2: he know he can stop and wait? And obviously he
14:39
Speaker 2: wasn't speaking, obviously, at the time. So he turned three,
14:42
Speaker 2: he started speaking properly. So he turned three in January
14:46
Speaker 2: this year. And I started, when he started speaking fluently,
14:50
Speaker 2: I kind of explained to him, when you need to
14:51
Speaker 2: go toilet, just tell me and we'll go. And he wouldn't,
14:54
Speaker 2: he would just do it in his nappy. And I'm like, ah,
14:57
Speaker 2: he would tell me after it was done. So then
14:58
Speaker 2: I was scared thinking, oh no, what if he doesn't
15:01
Speaker 2: know it's, you know, So I spoke to his consultant
15:04
Speaker 2: and he was like, look, I'd be very surprised if
15:06
Speaker 2: he didn't have any feeling because of the way, because
15:08
Speaker 2: it was a short segment of Hertzsprung disease. You know,
15:11
Speaker 2: the way he's in the operation, it would be very
15:13
Speaker 2: unlikely for him not to feel it. But then again,
15:16
Speaker 2: you never know. Everybody's different. But no, luckily now, you know,
15:21
Speaker 2: six months down the line since doing the potty training,
15:25
Speaker 2: he's doing really well. He works. tells me he needs
15:28
Speaker 2: to go toilet he will go himself um he can
15:32
Speaker 2: go on maybe without one like full day without opening
15:35
Speaker 2: his bowels but I'm not worried because the next day
15:37
Speaker 2: then he will do that so he's come a long
15:39
Speaker 2: way I have to say he has compared to I
15:42
Speaker 2: think a lot of other stories that I have heard
15:44
Speaker 2: he has done very very well still doing very very
15:48
Speaker 2: well he starts nursery in two weeks I'm dreading it
15:52
Speaker 2: I don't think he is I think he's excited but
15:53
Speaker 2: I'm dreading it personally And I've told, obviously, his teachers
15:57
Speaker 2: the whole thing of what he's been through because he
16:01
Speaker 2: has got a bit of trauma, even though he's still young.
16:03
Speaker 2: When I do take him to the hospital and when
16:05
Speaker 2: he sees his consultant, he's like, no, just no. He
16:08
Speaker 2: just doesn't want to go to him. Every time he
16:11
Speaker 2: sees blue gloves, that triggers him. He just, no. So
16:16
Speaker 2: there is something there that he obviously remembers because when
16:18
Speaker 2: he sees them blue gloves, he's like, no chance. I'm
16:21
Speaker 2: not going to that person. Even if it's for like
16:23
Speaker 2: one of his immunizations, he's like, no, I'm not doing it.
16:26
Speaker 2: So he has been through a lot. As a family,
16:30
Speaker 2: we've been through a lot because we've never heard of
16:32
Speaker 2: this Hirschsprung disease before ever. No one in my family's
16:36
Speaker 2: had it. Me and my husband actually had the testing done,
16:40
Speaker 2: the gene testing, I think it is. So we both
16:44
Speaker 2: had that done just to see if there was anything
16:46
Speaker 2: in our genes that's come back negative. So it's just
16:49
Speaker 2: a random gene gone wrong. That's all it's down to, really.
16:54
Speaker 2: And it has been very testing, but, you know, it's
16:57
Speaker 2: been a journey. It's been a hell of a journey.
16:59
Speaker 2: But I just think, you know, if I was heard
17:02
Speaker 2: maybe when he was six months old or referred to
17:06
Speaker 2: the hospital then for just an X-ray or something... this
17:09
Speaker 2: could have been done whilst he was smaller. I think
17:12
Speaker 2: the recovery period would have been a lot quicker maybe
17:15
Speaker 2: as well. But it just took six months to just
17:18
Speaker 2: even get someone to just say, you're right.
17:22
Speaker 1: Yeah, amazing. And what a journey so far. And I'm
17:26
Speaker 1: really glad to hear that everything is progressing well. That's
17:29
Speaker 1: fantastic to hear. But I'll take you back a little
17:32
Speaker 1: bit to, as you just mentioned, not being listened to
17:37
Speaker 1: is something I heard So, so often. And it's really,
17:40
Speaker 1: really disappointing. And I totally understand that GPs and doctors,
17:44
Speaker 1: they can't know everything about everything. I get that. But
17:48
Speaker 1: when Hirschsprung's occurs, there are so many signs. And it
17:56
Speaker 1: sounds like a son had, well, the distended stomach and
18:00
Speaker 1: he had various other signs. Did he have sort of, again,
18:05
Speaker 1: one of the classic giveaways, the kind of green bile
18:11
Speaker 1: being thrown.
18:12
Speaker 2: No, he didn't have that. No, he didn't have that.
18:15
Speaker 2: But he did have very watery bowels when he did
18:19
Speaker 2: open them. And the smell, honestly, it wasn't normal. That
18:23
Speaker 2: was just not normal. When we were in the hospital,
18:27
Speaker 2: the first hospital that I did go to, he actually
18:29
Speaker 2: opened his bowels there and he covered the table. And
18:32
Speaker 2: I said to them, look, it's in front of you now.
18:34
Speaker 2: You can smell it. It's horrific. And she actually took
18:36
Speaker 2: a stool sample with her. Never got the results for that,
18:39
Speaker 2: by the way. But she took that away with her.
18:42
Speaker 2: And even then I was bobbed off. I was like,
18:44
Speaker 2: how is that normal to you? It's not. No.
18:48
Speaker 1: No, I mean, it doesn't... And it is. It's one
18:50
Speaker 1: of those, again, it's following your instincts and going, is
18:55
Speaker 1: this normal? You know, like you said, two older daughters,
18:58
Speaker 1: you know what should happen. And... going actually this isn't
19:05
Speaker 1: normal this isn't right and and I guess that that
19:08
Speaker 1: is really really tricky to keep sort of pushing and
19:12
Speaker 1: keep going look there is something wrong.
19:15
Speaker 2: You need to move back and forth back and forth
19:18
Speaker 2: um you know when it all happened I actually then
19:20
Speaker 2: got all my medical records from the GP because I
19:22
Speaker 2: moved addresses anyway I was going through the records and
19:25
Speaker 2: I thought look how many times I've called and that
19:28
Speaker 2: I just looked at it and I thought I actually
19:30
Speaker 2: complained to the GP in the end anyway like I
19:32
Speaker 2: did put a formal complaint in before I moved practices
19:35
Speaker 2: just to kind of address that you know you should
19:37
Speaker 2: be doing more for your patients um you know especially
19:40
Speaker 2: if it comes to constipation for a week that's not
19:43
Speaker 2: normal you should be referring me to a hospital or
19:45
Speaker 2: something anyway. Not giving me a medicine saying, mum, it's
19:49
Speaker 2: all right.
19:49
Speaker 1: It's viral.
19:50
Speaker 2: It's going around. How does that go around? It doesn't.
19:54
Speaker 1: Yeah, that was a really odd thing that I picked
19:58
Speaker 1: up on.
19:58
Speaker 2: That really sticks with me that all the time. When
20:01
Speaker 2: I go tell someone that they're like, what? And I'm like, yeah.
20:05
Speaker 1: Yeah, I mean, to just go, oh, it's a virus. Oh,
20:08
Speaker 1: it's a virus. Oh, it's a virus. I mean, it
20:10
Speaker 1: obviously clearly wasn't, but it's quite an odd, yeah, it's
20:15
Speaker 1: quite an odd explanation to just sort of, and again,
20:18
Speaker 1: it's like you said, it sounded like you were being
20:21
Speaker 1: sort of fobbed off and just kind of, oh, yeah,
20:24
Speaker 1: you know, take this, take that. But, yeah, to go,
20:28
Speaker 1: I mean, I know you said sort of six months,
20:31
Speaker 1: I mean, even a year to wait to be diagnosed
20:35
Speaker 1: is unbelievable. I can't imagine. Was he in pain sort
20:42
Speaker 1: of all the time? Of course he was.
20:44
Speaker 2: He was just crying all the time because, you know,
20:46
Speaker 2: he couldn't obviously explain anything to me. He was only
20:48
Speaker 2: six months old. He couldn't tell me what it was.
20:51
Speaker 2: And he was crying all the time. And like I said,
20:53
Speaker 2: the first six months, he was perfectly fine, feeding fine,
20:56
Speaker 2: eating fine. He was a very happy-go-lucky baby. He was
21:00
Speaker 2: very healthy. He was like nearly 10 pounds when he
21:02
Speaker 2: was born. And then he drastically lost the weight as well.
21:05
Speaker 2: And that was another major thing to look for. Like
21:08
Speaker 2: I told him, look, you know, his waist, I started
21:11
Speaker 2: putting smaller size clothes on him again. So instead of
21:14
Speaker 2: going next size up, I was going down again. And
21:16
Speaker 2: I said to, I even mentioned that to the GP
21:17
Speaker 2: and even that didn't trigger anything, any worry, if anything. Just, yeah.
21:23
Speaker 1: I mean, that's another sign, isn't it? Another sign where it,
21:26
Speaker 1: I mean, something is up at that point. You don't go,
21:30
Speaker 1: especially at that age, you don't go down a size.
21:33
Speaker 1: Like it's, if anything, you're growing sort of too much.
21:38
Speaker 1: yeah exactly so um but yeah that that's again another
21:43
Speaker 1: sort of another red flag missed i guess yeah it's a.
21:47
Speaker 2: Shame really but what can i do it is at
21:50
Speaker 2: the time i just thought you know what it is
21:51
Speaker 2: what it is whatever um you know if i keep
21:54
Speaker 2: going i'm kicking off not getting anywhere and but the
21:57
Speaker 2: hospital was the same the first hospital that i went
21:59
Speaker 2: to they were the same the second time we went
22:02
Speaker 2: We actually just walked out of the hospital and they
22:03
Speaker 2: actually rang me in the middle of the night saying,
22:05
Speaker 2: we're looking for you. Where are you? The consultant's here
22:07
Speaker 2: to see you. And I was like, I've left. I said,
22:10
Speaker 2: you're not doing anything. So I've left. She's like, can't
22:12
Speaker 2: we discharge yourself? And I said, well, I've walked out.
22:14
Speaker 1: Well, it kind of is discharging.
22:18
Speaker 2: You're not doing anything. You keep telling me. You put
22:20
Speaker 2: me in a room saying he's just dehydrated. Of course
22:22
Speaker 2: he's dehydrated. Yeah.
22:24
Speaker 1: Yeah. It's those kind of general terms that I think
22:29
Speaker 1: is quite annoying because Hirschsprung's, I mean, Yes, it's very,
22:33
Speaker 1: very rare. And like you said, you'd never heard of
22:36
Speaker 1: it before, but that's not uncommon. I mean, I get
22:41
Speaker 1: people who say to me, oh, it's genetic. And yes,
22:44
Speaker 1: it is through genes, but it doesn't mean that we've
22:47
Speaker 1: all heard of it before. So it can be a
22:53
Speaker 1: very tricky one. But when you said also that there
22:58
Speaker 1: were sort of three other I guess one of them
23:03
Speaker 1: that's usually thrown out is things like cystic fibrosis. Was
23:06
Speaker 1: that ever mentioned to you?
23:07
Speaker 2: I think it probably was, yeah. And then celiac, I
23:10
Speaker 2: don't know how you pronounce it, celiac disease. So there
23:13
Speaker 2: were three things that I was informed it could be.
23:17
Speaker 2: But yeah, again, I'd never even heard of them other two.
23:20
Speaker 2: So it was all new to me.
23:22
Speaker 1: No, again, it's one of those things, I guess, that you...
23:28
Speaker 1: you don't hear until you kind of have to. Of course.
23:35
Speaker 1: And again, I don't know if you were told this
23:38
Speaker 1: as well, but there are a lot of parents who
23:39
Speaker 1: are told don't Google.
23:42
Speaker 2: Yeah, I was told not to. Well, I was told
23:46
Speaker 2: to look into it, look into the information, but don't
23:49
Speaker 2: take everything what you read serious, of course, as you do.
23:55
Speaker 2: so like like she said I did I did google
23:57
Speaker 2: everything just to see kind of what you know relates
24:00
Speaker 2: to my son more and it was the hurt spring
24:03
Speaker 2: disease I thought you know what that is more what
24:06
Speaker 2: he's got than the other two but obviously I had
24:09
Speaker 2: to do my own investigations and kind of learn more
24:12
Speaker 2: about what it is what to do because I know
24:15
Speaker 2: the doctors and they tell you everything explain it well
24:18
Speaker 2: but when you read something yourself I think it's more
24:21
Speaker 2: more better in that sense So I joined, you know,
24:23
Speaker 2: online groups. As soon as I typed in Hirschsprung disease
24:26
Speaker 2: on TikTok, it was just full of different things, different stories.
24:30
Speaker 2: That's how I found you, to be honest with you,
24:32
Speaker 2: through stuff like that and on Facebook. And I joined
24:35
Speaker 2: the group and I learned so much more of other parents.
24:38
Speaker 2: I would write in the comment section, you know, what
24:41
Speaker 2: do you do when they have the bag? You know,
24:43
Speaker 2: just different, different things. And everyone had different stories, different,
24:47
Speaker 2: you know, ideas of what to do, what not to do.
24:50
Speaker 2: But yeah, it was just, it was just crazy how that,
24:53
Speaker 2: them two words and everything kind of words have just
24:57
Speaker 2: opened into everything.
24:59
Speaker 1: Yeah. Yeah. I mean, there's, there's lots of really, really
25:03
Speaker 1: good stuff online, but it is, is also finding the
25:07
Speaker 1: right one for you, which could be really, really tough.
25:11
Speaker 1: I mean, it's especially on, well, some of the main
25:15
Speaker 1: sort of Hirschsprung's forums on Facebook is the Hairsprings UK
25:18
Speaker 1: and then there's another big Hairsprings one and there's just
25:21
Speaker 1: so many stories and you think kind of where do
25:25
Speaker 1: I start you know.
25:26
Speaker 2: Sometimes yeah it's crazy because some people have it a
25:30
Speaker 2: lot worse than what my son's gone through anyway like
25:33
Speaker 2: full colons or whatever you know and it's just mad
25:36
Speaker 2: you know some have worked some have not some have
25:39
Speaker 2: Botox still so it's mad there's so much more into
25:42
Speaker 2: it into Hairsprings I've still got my My book's still
25:45
Speaker 2: open in terms of his health, you know, going forward.
25:49
Speaker 2: As he's getting older, you know, everything changes inside you. So,
25:52
Speaker 2: you know, at the moment, yeah, it's all good. It's
25:54
Speaker 2: all good and working fine. As he gets older, who knows?
25:58
Speaker 2: We just don't know yet. So it's still there. To me,
26:00
Speaker 2: it's still there in the background. This issue is not
26:04
Speaker 2: still resolved. And that's why I made it clear to
26:07
Speaker 2: his teachers, like, okay, fine. I know he's had all
26:09
Speaker 2: his operations. That doesn't mean he's 100% okay. We still
26:14
Speaker 2: need to be very wary of what he's eating, drinking,
26:17
Speaker 2: even being around people that are ill. I don't want
26:20
Speaker 2: him to get poorly because that sets him off. So
26:23
Speaker 2: now he's going nursery, it's going to be hard for
26:24
Speaker 2: him to keep away from kids that are poorly all
26:27
Speaker 2: the time.
26:27
Speaker 1: Yeah, I think that's, Yeah, that can be nigh on impossible,
26:31
Speaker 1: I think.
26:31
Speaker 2: Yeah, of course. But I don't want them treating him
26:33
Speaker 2: differently either. Like I've made that very clear. Please carry
26:36
Speaker 2: on as normal. You know, he's still the same person.
26:41
Speaker 2: But yeah, he's thrived. He really has. He's not stopped
26:44
Speaker 2: him from doing anything. Even when he had his stoma bag,
26:47
Speaker 2: he carried on like he would. He was very, very weak.
26:52
Speaker 2: You know, he walked very late because of how weak
26:54
Speaker 2: he was. But still, you know, he was really good.
26:58
Speaker 2: I can't complain. Even when he was in pain, like
27:02
Speaker 2: when his stoma would get infected or really sore, you know,
27:06
Speaker 2: he'd be in so much pain, but he handled it
27:08
Speaker 2: very well. But do you know what I have to say?
27:10
Speaker 2: Kids are so resilient. I don't know how adults deal
27:13
Speaker 2: with it, but kids... I don't think adults can even
27:17
Speaker 2: handle it as much as kids do.
27:20
Speaker 1: Yeah, in some senses, I think. It's an interesting one.
27:24
Speaker 1: It was two interesting points you made there, but one
27:26
Speaker 1: of them being with kind of pain and pain tolerance. Yeah.
27:33
Speaker 1: I don't know this, and I'll never be able to tell,
27:35
Speaker 1: but I think people with Hirschsprungs do have really high
27:39
Speaker 1: pain tolerance thresholds because we go through so much at
27:45
Speaker 1: such a young age. And I think our pain tolerance,
27:49
Speaker 1: certainly from people I've spoken to who have it, our
27:52
Speaker 1: pain tolerance is pretty high, which I guess is a
27:54
Speaker 1: good thing.
27:55
Speaker 2: Yeah, I think it is, definitely. I think it does
27:57
Speaker 2: make you a stronger person as well. Like, obviously, him
28:01
Speaker 2: being young, I don't know how much he remembers. But
28:04
Speaker 2: when I asked him about his scars, he mentioned that
28:06
Speaker 2: he had a bag there. Like, I've still kept his
28:09
Speaker 2: trauma bag as a memory. And he also has Butany
28:12
Speaker 2: the Bear. So he knows what Butany the Bear is.
28:14
Speaker 2: He's got the trauma bag for Butany the Bear. He
28:16
Speaker 2: sleeps with it still to this day because he knows
28:18
Speaker 2: what it is. We've even got the book about it.
28:21
Speaker 2: So I read that every night to him because it
28:24
Speaker 2: is part of him. I don't want him to forget that,
28:26
Speaker 2: you know. And obviously as he goes older and he
28:29
Speaker 2: gets to the point where he does, you know, find
28:31
Speaker 2: a life partner, they will have to know this and,
28:35
Speaker 2: you know, potentially he could carry on to his kids. So,
28:38
Speaker 2: you know, I think the more information he has when
28:40
Speaker 2: he's older, the better he can explain to his future partner.
28:43
Speaker 1: Absolutely. But it would be interesting to see where, you know,
28:47
Speaker 1: Hirschsprung's research is with everything going on you know with
28:51
Speaker 1: the new Hirschsprung's UK charity and everything going on there
28:55
Speaker 1: and and that's one thing I'm really looking forward to
28:59
Speaker 1: to see where Hirschsprung's research is I.
29:01
Speaker 2: Think they talked about it at the Liverpool talk I
29:03
Speaker 2: think that's where we met for the first time as
29:06
Speaker 2: well yeah so in Liverpool they mentioned the future ideas
29:09
Speaker 2: they have for Hirschsprung so that would be very interesting
29:12
Speaker 2: to see.
29:13
Speaker 1: Definitely yeah I think so I just I think, I
29:18
Speaker 1: don't know whether it's because I follow so many Hirschsprungs
29:22
Speaker 1: people that I didn't, you know, five years ago. I
29:26
Speaker 1: seem to see a lot more of it now. I
29:29
Speaker 1: don't know whether there is more of it or whether
29:31
Speaker 1: I'm just seeing it because I'm just interested.
29:33
Speaker 2: I've heard about it. I've seen it a lot more now.
29:36
Speaker 2: um it's just normal hearing it now all the time
29:40
Speaker 2: and especially in the groups when you see like a
29:41
Speaker 2: new member joining and they're asking all these questions I'm
29:43
Speaker 2: like wow you know it it's getting more and more.
29:47
Speaker 1: I think it is yeah I think it'll be really
29:50
Speaker 1: interesting really interesting to see to see where it is
29:54
Speaker 1: um another point you made which was really good was
29:57
Speaker 1: um about or surrounding diet Which can be a total minefield.
30:03
Speaker 1: I mean, with children anyway, like never mind having a
30:08
Speaker 1: child with Hirschsprungs or medical condition can be really, really tough. Yeah.
30:15
Speaker 1: Have you found, I know you said you sort of
30:17
Speaker 1: kept it very safe, sort of at the start, but
30:20
Speaker 1: have you found any that have sort of really worked well?
30:24
Speaker 2: I think the clear seeds are a good shout. They've
30:26
Speaker 2: been really good. So when I sold them overnight, so
30:31
Speaker 2: he can either have it in his milk when he's
30:33
Speaker 2: having cereal just so he can't see it. So it's
30:35
Speaker 2: kind of blended in, otherwise he won't have it. But cereal,
30:38
Speaker 2: I do it in the cereal and that really works
30:40
Speaker 2: for him in the beginning. Again, even having wholemeal bread,
30:45
Speaker 2: the pastas, that's been really good. Like chickpeas. But other
30:50
Speaker 2: than that, he's been eating everything else. So he has
30:55
Speaker 2: home-cooked food mainly anyway. So yeah, he eats everything and
30:59
Speaker 2: yet it's been sitting fine with his stomach. Try to
31:03
Speaker 2: obviously refrain him from having sweets or chocolates or anything
31:05
Speaker 2: that's kind of like that. But it's hard. He's a kid.
31:08
Speaker 2: He wants it. So, you know, we don't say, no,
31:10
Speaker 2: you're not allowed it. You know, I want him to
31:12
Speaker 2: kind of experiment with it and just to see how
31:14
Speaker 2: it sits with his stomach. I don't know if that
31:16
Speaker 2: makes sense. In my head, it makes sense for his
31:18
Speaker 2: stomach to kind of get used to all foods rather
31:20
Speaker 2: than just one kind of diet. So I have mixed
31:23
Speaker 2: it up and so far, so good. It's working. So
31:28
Speaker 2: let's just see if it continues. Hopefully it will.
31:31
Speaker 1: Yeah, definitely. And it's like a lot of people I
31:34
Speaker 1: speak to because there's no sort of one Hirschsprung's diet
31:39
Speaker 1: that we have to stick to because we're all different.
31:43
Speaker 1: And sometimes it can be very much trial and error
31:47
Speaker 1: and going right well does this work and and that
31:50
Speaker 1: as well is a difficult one because there's some things
31:52
Speaker 1: that work on certain days and then you'll try it
31:55
Speaker 1: a week later and it works and.
31:56
Speaker 2: It's it's definitely I was doing chia seeds near enough
32:00
Speaker 2: every day my mother-in-law was like don't give it every
32:03
Speaker 2: day take a break stop it because you don't want
32:05
Speaker 2: I'm just getting used to just having because if it
32:08
Speaker 2: is chia seeds work and you need to know if
32:09
Speaker 2: you stop it will his you know will it stop
32:12
Speaker 2: his system I was like, you know, that's a very
32:14
Speaker 2: good point actually. So I did stop just to see
32:17
Speaker 2: how he gets on and he was fine with and
32:19
Speaker 2: without it. So that's good. I mean, I try to
32:24
Speaker 2: mainly use like natural things to kind of get his
32:26
Speaker 2: body going rather than trying medicines. Like he's got medicines,
32:30
Speaker 2: he's got spotters trees where I don't have to use that.
32:34
Speaker 2: I'll try something natural first. But so far we have
32:38
Speaker 2: been quite good. I think we've had to use spotters
32:40
Speaker 2: tree maybe once on him since he's had everything done. So, yeah,
32:44
Speaker 2: I think we went to Pakistan last month, actually, for
32:49
Speaker 2: three weeks. I was kind of thinking, right, you know,
32:51
Speaker 2: I don't know how his bowels are going to be.
32:52
Speaker 2: Are they going to be okay? And even there, they
32:55
Speaker 2: were perfectly fine. He ate well, opened his bowels still.
32:59
Speaker 2: And I thought, okay, wow, that's really good. I thought
33:02
Speaker 2: it's a change of season, change of food, environment even,
33:06
Speaker 2: you know. So I was a bit hesitant to think
33:09
Speaker 2: how he will be, but fantastic. Okay.
33:13
Speaker 1: That's brilliant, because you never know with obviously change of diet,
33:17
Speaker 1: but change, like you said, change of climate as well
33:20
Speaker 1: and change of season and environment. And yeah, that's really,
33:24
Speaker 1: really good to hear that everything is progressing as it should.
33:29
Speaker 2: No, it has been. It was, I mean, it has
33:31
Speaker 2: been a roller coaster. I think this is the only
33:32
Speaker 2: year we've actually really enjoyed it. him uh without him
33:37
Speaker 2: being in hospital all the time obviously when he was
33:39
Speaker 2: going it was weeks he would be in there um
33:42
Speaker 2: so you know I felt like I neglected my older
33:44
Speaker 2: two children as well because I was always with him
33:47
Speaker 2: in and out hospital for weeks on end um so
33:50
Speaker 2: yeah the first two years of his life have been
33:52
Speaker 2: manic and this year we've kind of enjoyed him uh
33:56
Speaker 2: we've done so much we've done so much this year
33:58
Speaker 2: we think we could you know um i think that's
34:00
Speaker 2: why i probably do spoil him a little bit more
34:02
Speaker 2: um because of that i think you know what why
34:05
Speaker 2: not though he's had hell for the last two years
34:07
Speaker 2: all he's seen is the bloody hospital and back home
34:09
Speaker 2: and he's not seen anything else so Yeah, I'm looking
34:13
Speaker 2: forward to him starting nursery and that'll be a good
34:15
Speaker 2: thing for him as well. Because to be honest with you,
34:19
Speaker 2: he's not really, he's not really got, he's not really
34:21
Speaker 2: mingled with any children, you know, yet. So I know
34:25
Speaker 2: he's got his siblings, but that's kind of different. So yeah,
34:28
Speaker 2: we'll see how he gets on in nursery and how
34:30
Speaker 2: life is there, I suppose. Like I have told them
34:33
Speaker 2: I need to know when he does open his bowels,
34:36
Speaker 2: how many times, if he does, because he'll come home
34:39
Speaker 2: and say he did, but I don't know that. He's
34:42
Speaker 2: only a three-year-old in the day. He'd probably say, yeah,
34:44
Speaker 2: I did and didn't. So I think that would be
34:47
Speaker 2: a test as well. So, yeah.
34:49
Speaker 1: It will. Yeah, I guess it's one of those as
34:53
Speaker 1: well in speaking to other parents who've been in that
34:56
Speaker 1: similar situation. It's making the nursery aware. And again, you know,
35:02
Speaker 1: if doctors don't know what Hirschsprung's disease is, a lot
35:05
Speaker 1: of the time nurseries won't know.
35:06
Speaker 2: What it is. The first time she heard of it,
35:09
Speaker 2: I kind of like made a sheet for her and
35:11
Speaker 2: laminated it so she could refer to it if need
35:14
Speaker 2: be and to look after any signs and literally just
35:17
Speaker 2: call me up as soon as she sees anything different
35:19
Speaker 2: about him. So yeah, I have made them fully aware
35:22
Speaker 2: and it is new to them as well. But yeah,
35:25
Speaker 2: we'll see how it gets on. I think he will,
35:28
Speaker 2: fingers crossed, be okay. But let's see.
35:31
Speaker 1: Yeah, no, hopefully that'll all work out really, really well.
35:35
Speaker 1: There is one more point that she made. about when
35:39
Speaker 1: you talked about blue gloves and you talked about sort
35:42
Speaker 1: of what can probably be described as maybe kind of
35:45
Speaker 1: hidden trauma.
35:47
Speaker 2: Definitely.
35:48
Speaker 1: And I think that's something that I'm seeing a lot
35:52
Speaker 1: more in people I talk to and their children don't
35:58
Speaker 1: like this and they don't like that. And I think
36:01
Speaker 1: it's really, really interesting what we remember and kind of
36:06
Speaker 1: what our subconscious remembers. um so I think again I
36:12
Speaker 1: guess it's been kind of a difficult one for him
36:16
Speaker 1: to communicate because he's so young if.
36:18
Speaker 3: That makes sense yeah definitely but it's uh I guess
36:22
Speaker 3: that's been a and anytime he sees the blue gloves
36:25
Speaker 3: like we actually got the blue gloves at home and
36:28
Speaker 3: we used to blow them up and tie him up
36:29
Speaker 3: and put faces on it just so he could play
36:31
Speaker 3: with it just you know get familiar with them at
36:34
Speaker 3: home he'd be okay because he's with you know us
36:37
Speaker 3: and his sibling so he's like okay whatever but when
36:39
Speaker 3: he's in that.
36:40
Speaker 2: Environment in a different setting and he sees that no
36:44
Speaker 2: chance that they're getting him they have to pin him
36:45
Speaker 2: down it's not happening.
36:48
Speaker 1: No no and and but that again it makes total
36:51
Speaker 1: sense though doesn't it it makes you know and i
36:55
Speaker 1: think that i think that there is going to be
37:00
Speaker 1: a level of trauma with every her sprung's patient person?
37:06
Speaker 1: Because it's like I've said before, it's not normal. We
37:11
Speaker 1: go through it.
37:12
Speaker 2: No, it's not. It's a big test. And it's a
37:17
Speaker 2: very big thing for parents what they go through to
37:19
Speaker 2: see their child in pain and going through all these surgeries.
37:23
Speaker 2: you have to mentally and physically be very strong. I'm
37:26
Speaker 2: quite a strong person anyway. And that broke me seeing,
37:30
Speaker 2: you know, a child in such a vulnerable state, you know,
37:35
Speaker 2: such a young age, having all these, you know, wires
37:37
Speaker 2: and things coming out of him. And, you know, just
37:40
Speaker 2: seeing him pull in a normal day is like, oh no,
37:42
Speaker 2: you know, they're unwell. You know, we don't like it because,
37:45
Speaker 2: you know, they're not themselves. But seeing him like that,
37:49
Speaker 2: I think it's very, it's a big thing for parents
37:51
Speaker 2: to deal with as well. I don't think a lot
37:53
Speaker 2: of people touch upon that as well of how us
37:57
Speaker 2: parents feel um about the whole thing and you know
38:00
Speaker 2: some people are struggling there's you know through the group
38:04
Speaker 2: there's actually someone in Pakistan that actually reached out to
38:06
Speaker 2: me because their English is not their first language and
38:09
Speaker 2: she's asked me to kind of just to translate a
38:11
Speaker 2: few things because she wasn't aware of how it all
38:14
Speaker 2: works and you know I've made a friend through through
38:17
Speaker 2: the group now and I explained to her how obviously
38:19
Speaker 2: we do it here in the UK um and it's
38:22
Speaker 2: kind of similar to how they do it abroad but
38:24
Speaker 2: obviously it's difficult for them because they have to pay
38:27
Speaker 2: for everything and it costs a lot of money and
38:30
Speaker 2: you know so everyone goes through it differently in different
38:32
Speaker 2: parts of the country and it just goes to show
38:34
Speaker 2: that we are kind of lucky where we do have
38:36
Speaker 2: the NHS and it is free You know, so that
38:40
Speaker 2: we were very grateful for. You know, it could have
38:42
Speaker 2: cost thousands somewhere else. So in that sense, I have
38:46
Speaker 2: to say we are lucky that we have got that facility.
38:52
Speaker 2: But yeah, we go through a lot, kids and parents both.
38:55
Speaker 2: I think it's nice to have someone in the background
38:58
Speaker 2: to kind of help you, whether that's your partner, your
39:00
Speaker 2: family or even your friends. You know, if you've got
39:02
Speaker 2: a good support group, you can get through these things.
39:04
Speaker 2: But some people don't have that. And I feel for
39:07
Speaker 2: them because I don't know how they're managing if they
39:10
Speaker 2: don't have that support system in place. I don't know
39:13
Speaker 2: how it is for them, to be honest with you,
39:15
Speaker 2: if they have it from the hospitals or not. I
39:17
Speaker 2: think that's where the group kind of comes in very
39:19
Speaker 2: helpful on Facebook because everyone's there for each other. No
39:22
Speaker 2: one judges anyone. You can just say how it is.
39:24
Speaker 2: You can share whatever picture it is. No one finds
39:27
Speaker 2: it nasty or horrible when we, you know, it's normal.
39:30
Speaker 2: for us we're like yeah that's fine yeah that looks
39:31
Speaker 2: normal you know it's it's just normal there's nothing to
39:34
Speaker 2: cringe over.
39:35
Speaker 1: Yeah yeah exactly i mean and you made another good
39:39
Speaker 1: point there i mean i interview people from you know
39:42
Speaker 1: all around the world and there are a lot of
39:44
Speaker 1: places where you know um Hirschsprung care is very, very expensive.
39:50
Speaker 1: And we are, as you said, we are incredibly lucky
39:52
Speaker 1: to have the NHS in this country. I mean, you know,
39:56
Speaker 1: God knows what some of our medical bills would have
39:59
Speaker 1: been over the years. I mean, thousands or even hundreds
40:03
Speaker 1: of thousands. But it's, no, we are incredibly lucky, incredibly
40:08
Speaker 1: fortunate to have the NHS. And it's, I think the
40:13
Speaker 1: other really good point was that sort of, something that
40:16
Speaker 1: isn't touched on enough and I'm trying to a little
40:19
Speaker 1: bit on here, but about kind of how parents feel
40:23
Speaker 1: because it's difficult because obviously your child is going through
40:29
Speaker 1: and your, your case, your son is going through, you know,
40:32
Speaker 1: lots of surgery, lots of really difficult times.
40:35
Speaker 2: Yeah.
40:35
Speaker 1: And, but it's also important, I guess, to look after
40:38
Speaker 1: you and your husband as well because otherwise if you're
40:43
Speaker 1: not okay, then, it's going to possibly filter that i'll.
40:47
Speaker 2: Be okay to deal with the situation then um so
40:51
Speaker 2: yeah no it is a lot it takes a mental
40:53
Speaker 2: toll on you like i said uh i wasn't working
40:56
Speaker 2: at the time um so you know it was just
40:58
Speaker 2: one person working me at home all the time you
41:02
Speaker 2: know with my son and when my husband's come home
41:05
Speaker 2: he was hands-on with changing bags like i couldn't cut
41:08
Speaker 2: the holes on the bags i could never do it
41:10
Speaker 2: right And I needed him to, he literally used to
41:12
Speaker 2: cut like a batch of 20 for me. And, you know,
41:15
Speaker 2: you go through so many of them. I'm like, oh,
41:17
Speaker 2: I need another batch again. And he was always the
41:19
Speaker 2: one cutting the bags because I never did it right.
41:22
Speaker 2: Even though I've got a template, I just couldn't do it.
41:24
Speaker 2: It just wasn't in my hands to do it. So
41:27
Speaker 2: he was really good like that. You know, we take
41:29
Speaker 2: it in turns. We do it together. And in the hospital,
41:32
Speaker 2: he would always take time off work. I used to
41:35
Speaker 2: actually say to him, you go back to work. It's fine.
41:37
Speaker 2: I'm in the hospital with him. He's like, no. He's like,
41:39
Speaker 2: if I go to work, my... And my mental health
41:42
Speaker 2: is not going to be right working. I have to
41:44
Speaker 2: be here, present. Like, I just can't just go to
41:46
Speaker 2: work and ignore the fact that he's ill in hospital,
41:49
Speaker 2: you know? So it was a very tough time, but
41:51
Speaker 2: we were very lucky where we had family. You know,
41:54
Speaker 2: my mum's down the road. My in-laws are down the road.
41:56
Speaker 2: So they really helped out with my other two children
41:59
Speaker 2: because they had school at the time. I didn't do
42:01
Speaker 2: any drop-offs. I didn't do any of that. So I
42:03
Speaker 2: did neglect them in that time. But luckily, they're very
42:06
Speaker 2: understanding as to why mum's not home. They came to visit, obviously,
42:10
Speaker 2: in the hospital and they saw what he went through.
42:14
Speaker 2: But he's really close to his siblings and they love him.
42:17
Speaker 2: They didn't see him any different. They didn't say, oh,
42:20
Speaker 2: what's that on his stomach? You know, like kids do
42:22
Speaker 2: because they're kids at the end of the day. They
42:24
Speaker 2: were not like that and it was just nice that
42:26
Speaker 2: they were comfortable being around him still and just saw
42:29
Speaker 2: him as a normal brother still, you know. You know,
42:33
Speaker 2: there were some times where, you know, if I was
42:36
Speaker 2: out in public or, You know, if I lift this
42:39
Speaker 2: top up and you could see the bag, people would
42:41
Speaker 2: look like, oh God, what's that? I can't hide it.
42:44
Speaker 2: It is what it is. You know, it's a disability
42:47
Speaker 2: and it's there. Some are hidden, some are on show.
42:50
Speaker 2: It is what it is. And I don't see any less.
42:53
Speaker 2: Doesn't that make that less of a person?
42:55
Speaker 1: Nope.
42:56
Speaker 2: Nope.
42:57
Speaker 1: Exactly. Exactly. And just finally, I know you touched on
43:01
Speaker 1: a little bit with nursery and whatnot, but what do
43:05
Speaker 1: you hope for the future for your son?
43:08
Speaker 2: Obviously, I hope that he just learns how to Just
43:12
Speaker 2: carry on being himself, first of all, like he is.
43:15
Speaker 2: Cheeky chap that he is. And just to know how
43:19
Speaker 2: to control his bowels. You know, maybe just to learn
43:24
Speaker 2: how to eat himself better. To understand Hirschsprung disease. As
43:28
Speaker 2: he gets older, obviously a little bit more to understand
43:30
Speaker 2: what he's going through. But I just want him to
43:31
Speaker 2: just be normal. Just don't think that he's any different.
43:34
Speaker 2: I don't think he thinks he's any different anyway. But
43:37
Speaker 2: as he gets older, there probably will be more questions,
43:39
Speaker 2: you know, because the scars are there, he probably will
43:42
Speaker 2: question it when he's older. But hopefully a nurse, I
43:45
Speaker 2: just hope he just carries on as normal and he
43:49
Speaker 2: does what he needs to do and just learns and
43:51
Speaker 2: is not behind anything. I just don't want anyone to
43:54
Speaker 2: treat him any differently or even be picked on, you know,
43:57
Speaker 2: because it will happen. And I have said to the teachers,
44:02
Speaker 2: because when he does pass gas, you can't help it.
44:05
Speaker 2: It is smelly, unfortunately. I don't want kids to make
44:08
Speaker 2: fun of him in that sense. You know, he might
44:11
Speaker 2: have an accident. You know, it happens because some kids,
44:15
Speaker 2: even now they do, when I read online, they do
44:18
Speaker 2: have smears here and there. So, you know, that might
44:22
Speaker 2: happen with him. I just don't want anyone to take
44:24
Speaker 2: Mick out of him when he goes to nursery because kids,
44:27
Speaker 2: they're kids. They can be cruel. They don't mean to be.
44:29
Speaker 2: I just don't want that to happen for him. That's
44:32
Speaker 2: my main concern. I think it is with the whole
44:34
Speaker 2: nursery situation is not to be treated differently or picked on.
44:40
Speaker 1: Absolutely. Absolutely. Well, thank you so much for coming on.
44:44
Speaker 1: It's been great to chat to you. And I wish
44:47
Speaker 1: you all very, very best for the future.
44:49
Speaker 2: Thank you very much. Thank you so much, Tom. You
44:52
Speaker 2: keep up the good work. I think you're doing an
44:53
Speaker 2: absolutely amazing job, by the way. Honestly, the time out
44:57
Speaker 2: to do this is a real big thing. I don't
45:00
Speaker 2: see a lot of people doing that.
45:02
Speaker 1: My pleasure. Thank you for listening and being part of
45:08
Speaker 1: this growing community. If you have enjoyed the episode, don't
45:11
Speaker 1: forget to subscribe, leave a review, and share it with
45:14
Speaker 1: someone who might need it. You can connect with us
45:17
Speaker 1: on social media via Instagram, Facebook, and TikTok under the
45:21
Speaker 1: name Tom's Hirschsprungs Podcast. See you next week. Thank you.