Latest / Tom's Hirschsprung's Podcast / Episode 131 - With Katie Thomson

Transcript

Episode 131 - With Katie Thomson · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
0:12
Speaker 1: just want to understand more, this podcast is for you.
0:15
Speaker 1: Each episode, we will explore real stories and honest conversations
0:19
Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in.
0:45
Speaker 2: Hello, and welcome to episode one hundred and thirty one
0:49
Speaker 2: of Tom's Hirshbrungs Podcast. I'm very glad this afternoon to
0:53
Speaker 2: be joined by Katie. Katie, welcome to the podcast.
0:56
Speaker 3: Thank you, Thank you so much for having me.
0:58
Speaker 4: Oh pleasure.
1:00
Speaker 2: Now we are here to talk about your your child
1:03
Speaker 2: with Hirshprungs. And We've got some some rather interesting topics
1:07
Speaker 2: that I've actually had to do some Google and research
1:09
Speaker 2: on for the first time in a while that we're
1:12
Speaker 2: here to just have a little chat about as well.
1:15
Speaker 2: But I guess start from wherever you feel comfortable.
1:19
Speaker 3: So my pregnancy, I have got a medical condition myself,
1:26
Speaker 3: so I had a high risk pregnancy, so I had
1:29
Speaker 3: like a lot of anxiety around that already, which kind
1:34
Speaker 3: of leads into what I'm going to get into with
1:36
Speaker 3: my son and his diagnose diagnosis. So I've got PKU
1:43
Speaker 3: which had to be monitored really carefully in pregnancy with
1:51
Speaker 3: my child. A lot people with PKU usually have to
1:57
Speaker 3: plan their pregnancy, and I didn't. I felt pregnant, and
2:04
Speaker 3: my choice was that I was going to keep it
2:05
Speaker 3: and just go with it and see that obviously came
2:09
Speaker 3: with risks, and one of those being ninety two percent
2:14
Speaker 3: chance of brain damage if my diet wasn't managed correctly
2:19
Speaker 3: and with care. So I was under a couple of
2:22
Speaker 3: hospitals at the time and liaising with them in regards
2:26
Speaker 3: to kind of how it was going to be managed.
2:30
Speaker 3: And my blood levels had to sit between the range
2:35
Speaker 3: of one twenty to two point fifty. And in regards
2:42
Speaker 3: to my diet, I've always had a very healthy diet
2:44
Speaker 3: growing up. Wasn't very good at taking supplements, so I
2:49
Speaker 3: knew that that was going to be a challenge for me.
2:52
Speaker 3: But you just kind of get on with it and
2:55
Speaker 3: do it when you have to. So I did. And
2:58
Speaker 3: now there's a few issues a lot away with like
3:02
Speaker 3: pregnancy sickness that obviously didn't help. And then taken the
3:06
Speaker 3: supplements on top of that made it slightly worse for me,
3:12
Speaker 3: But we came out the other end and my son
3:16
Speaker 3: is very healthy and happy and he's thriving. But leading
3:23
Speaker 3: to that this when I had my son with his
3:28
Speaker 3: diagnosis of Hirshbrun's, we got discharged from the hospital, but
3:34
Speaker 3: he hadn't passed maconium and they put that down to
3:39
Speaker 3: a hormone with it that was related to like my
3:43
Speaker 3: medical condition, which I was unaware of. I didn't know
3:48
Speaker 3: that it was like a procedure or anything like that
3:51
Speaker 3: that a child had to pass my marconium before they
3:55
Speaker 3: leave the hospital. And then came home literally the day after,
4:05
Speaker 3: and everything was fine. He was feeding like it was
4:08
Speaker 3: everything was just so normal. He was settled, no issues,
4:14
Speaker 3: and then midwives came out on day five and was
4:22
Speaker 3: concerned because she had noticed that his tummy was distended,
4:27
Speaker 3: and back at the time, it was just so normal,
4:32
Speaker 3: like everything was so normal. It felt so normal. But
4:37
Speaker 3: actually looking back at it now on reflection, I can't
4:41
Speaker 3: really notice how distended his tummy was. But he was
4:45
Speaker 3: showing no signs of like discomfort or anything like that,
4:49
Speaker 3: and he hadn't opened bows or anything.
4:52
Speaker 2: At home.
4:53
Speaker 3: Well, when we got discharged, So obviously I was communicating
4:56
Speaker 3: with midwives community midwives, and then on day five, that's
5:04
Speaker 3: when we got I had to go to our local hospital.
5:12
Speaker 3: Then from there we got blue lighted over to a
5:17
Speaker 3: children specialist hospital and had to stay in for quite
5:24
Speaker 3: a few nights. But there was a bit of confusion.
5:29
Speaker 3: So I was told that he had hernia that hadn't
5:35
Speaker 3: been picked up on prior so he had to have
5:39
Speaker 3: an operation for that. But at the same time, where
5:43
Speaker 3: he hadn't passed any marconium or been to the toilet
5:46
Speaker 3: or anything like that, they were going to do the
5:50
Speaker 3: biopsy for hershbruangs, and I remember the consultant that I
5:58
Speaker 3: was speaking to was saying, Oh, it's They're just giving
6:04
Speaker 3: it as precaution, like a lot of the results usually
6:07
Speaker 3: come back as just like everything's fine, and then we'll
6:11
Speaker 3: investigate it further. But then he got a diagnosed at
6:14
Speaker 3: three weeks old with hirshbrungs, and then he's from there,
6:22
Speaker 3: had multiple surgeries. He had the pull through surgery done,
6:30
Speaker 3: and then I was having to do flush outs and suppositories.
6:36
Speaker 3: He has got he's got the short segment of hirshbrungs,
6:41
Speaker 3: which I'm grateful for because he's not got a stoma,
6:47
Speaker 3: and I was quite worried about that. Definitely, like a
6:53
Speaker 3: lot of anxiety around all of that kind of health
6:58
Speaker 3: things when you're not sure of kind of what to expect.
7:02
Speaker 3: I obviously knew nothing about harsh rungs or anything like that,
7:06
Speaker 3: and I was post C section, so it was like
7:09
Speaker 3: a few days after my sea section, so I was
7:12
Speaker 3: still like in recovery mode as well, and then being
7:17
Speaker 3: on being at the hospital, didn't have the greatest experience
7:25
Speaker 3: in terms of relayed information and kind of the care.
7:34
Speaker 3: But I guess there's good and bad everywhere. And he's
7:36
Speaker 3: still under the hospital at the minute that I'm referring to,
7:42
Speaker 3: and since you know, I've spoken to them, we've kind
7:46
Speaker 3: of gone through things and he's still under their care now,
7:50
Speaker 3: so but he's not obviously at hospital as much as
7:54
Speaker 3: he is now, So that's definitely a bonus. And also
8:00
Speaker 3: I find that because there's a page that I also
8:03
Speaker 3: follow on Facebook and I see people posting on there,
8:08
Speaker 3: but so many hirshbrung stories are so different, like it
8:14
Speaker 3: affects everybody so differently. So like the one thing that
8:19
Speaker 3: could affect my son could be the complete opposite for
8:22
Speaker 3: somebody else. So in terms of that, like, I think
8:29
Speaker 3: it's maybe a little bit harder to find people that
8:32
Speaker 3: can relate in that sense, But I definitely think the
8:35
Speaker 3: one thing that as parents that you can relate to
8:39
Speaker 3: is the worry and the stress and kind of how
8:46
Speaker 3: it affected you in that time of like what you
8:49
Speaker 3: needed to do and how you needed to do it.
8:52
Speaker 3: And then if your experience in a hospital was good
8:55
Speaker 3: or bad, that obviously adds on top of that. And
8:58
Speaker 3: that's the thing for me that I found quite difficult
9:01
Speaker 3: is because my experience wasn't as what I hoped it
9:06
Speaker 3: could have been would have been. I found that really
9:10
Speaker 3: difficult to kind of let go of. So for a
9:13
Speaker 3: long time I would just sit in question things like
9:18
Speaker 3: like why, like why is that happening? Why did that happen?
9:21
Speaker 3: Like and like try and reflect on it, but actually
9:24
Speaker 3: it just happened because that's just the way that it happened,
9:27
Speaker 3: and like sometimes you can't really do anything about it,
9:30
Speaker 3: and that's kind of you just have to be able
9:33
Speaker 3: to try and put that to bed. But yeah, it
9:38
Speaker 3: was definitely a difficult time. I remember actually sitting on
9:44
Speaker 3: the hospital bed thinking like, oh my god, is this
9:47
Speaker 3: ever going to get better? I genuinely thought it wouldn't
9:50
Speaker 3: get better and there was no light at the end
9:52
Speaker 3: of the tunnel. But actually we've come out the other
9:55
Speaker 3: side of that, and like, my little boy is on
10:03
Speaker 3: waiting list for boatox to help with the muscle so
10:10
Speaker 3: that he's not as constipated. But actually we got offered
10:14
Speaker 3: that the beginning of June, and I actually turned it
10:19
Speaker 3: down because I don't feel like he needs it. So
10:23
Speaker 3: if he's happy, if he's doing well within himself, then
10:27
Speaker 3: you know, and avoiding surgery, then that's the best thing
10:32
Speaker 3: going forward, then that's what I'll do. But yeah, he's
10:37
Speaker 3: still on the waiting list and I can just call
10:39
Speaker 3: up if I need to. But he's definitely happy and
10:43
Speaker 3: he's thriving, and he's come out the other end of it,
10:46
Speaker 3: which is the main thing. And it doesn't I notice that,
10:50
Speaker 3: actually it doesn't. It's so normal for like the children
10:54
Speaker 3: because they've had it from birth, whereas like as a
10:58
Speaker 3: parent and you don't know anything about it, and then
11:01
Speaker 3: you step into kind of that looking after like a
11:05
Speaker 3: poorly baby. Then come in from the other side of it.
11:09
Speaker 3: You know, you eventually realize that actually it doesn't really
11:13
Speaker 3: affect the children as such. It more affects kind of
11:17
Speaker 3: the parents and like how you are and how you
11:20
Speaker 3: deal with it, because it's so normal for them and
11:22
Speaker 3: they've just been able to deal with it. Obviously a
11:25
Speaker 3: lot of children are very resilient. So yeah, that's just
11:33
Speaker 3: kind of that's yeah.
11:35
Speaker 2: I mean, it's an interesting point, the last point you made,
11:38
Speaker 2: when obviously, yes, it does physically sort of affect us
11:45
Speaker 2: as the people who have hirsch Bruns and mentally very
11:50
Speaker 2: difficult and emotionally very difficult. I imagine I haven't been
11:54
Speaker 2: through it as a parent, but mentally and emotionally very difficult.
11:58
Speaker 2: But I I think, again, everybody's different, but I think
12:04
Speaker 2: it's the mental and emotional toll for us with Heirsprungs
12:12
Speaker 2: can also be quite a lot as well. But obviously,
12:16
Speaker 2: when we're going through all of the surgeries and the
12:19
Speaker 2: biopsies and all of that, we're often very often very
12:25
Speaker 2: very young, so probably unable to communicate how that affects
12:31
Speaker 2: us at the time, If that makes sense, I think it's. Yeah,
12:36
Speaker 2: it's it's so I think some again, sometimes not everybody,
12:41
Speaker 2: but sometimes can affect people later down the line because
12:44
Speaker 2: it is a sort of trauma, I guess that. And
12:50
Speaker 2: I think it's one of those things I think where
12:53
Speaker 2: where everybody in some way will be affected, and I
12:58
Speaker 2: think you're very very lucky if you're if you're not affected,
13:01
Speaker 2: If that make sense, Yeah, because it's it can be.
13:07
Speaker 2: It can be one of those things, especially with everything
13:09
Speaker 2: happening so young, it becomes it becomes really tough. There's
13:14
Speaker 2: something you said about the lack of maconium past and
13:20
Speaker 2: you mentioned about there being or one of the reasons
13:24
Speaker 2: that were given was because of a hormone.
13:28
Speaker 3: Yeah, so that was related to my medical condition. That's
13:35
Speaker 3: just what they had said at the time, that due
13:38
Speaker 3: to a hormone within me that was missing. I think
13:45
Speaker 3: they said it was missing. They basically put it down
13:49
Speaker 3: that he didn't pass maconium because of that reason, which
13:53
Speaker 3: I'd never heard before and was completely like, oh okay,
13:59
Speaker 3: like it was only that was only then brought up
14:03
Speaker 3: when it was questioned why my summer's discharged without him
14:08
Speaker 3: passing maconium and that was what they had come back with.
14:12
Speaker 2: Wow, I mean that was I'll be honest, there's that's
14:15
Speaker 2: something I've never heard of.
14:16
Speaker 4: In the two and a half years I've.
14:18
Speaker 3: Been doing this, never heard of it before either.
14:23
Speaker 4: No, it's it's yeah.
14:26
Speaker 2: But it's interesting that that that was sort of the
14:29
Speaker 2: p K was pinned on, well, that that was the
14:34
Speaker 2: reason why or the reason said why that the maconium
14:37
Speaker 2: wasn't passed when obviously it was something completely different in hirsprungs.
14:43
Speaker 2: And also three weeks as well, again roughly the same
14:47
Speaker 2: amount of time I took to be diagnosed. But that
14:50
Speaker 2: on on average again from the people I've spoken to,
14:54
Speaker 2: is quite late. Was that just because they hadn't heard
14:58
Speaker 2: of it, or was it because they were sort of
15:00
Speaker 2: still under the sort of PKU hormone assumption, so they had.
15:05
Speaker 3: Heard of it. They have dealt with quite a few
15:09
Speaker 3: patients within this hospital with the same kind of condition.
15:16
Speaker 3: But it was actually the biopsy results that took so long,
15:21
Speaker 3: Like getting back to me, that's kind of where I
15:24
Speaker 3: found that there was a very long gap. So obviously
15:28
Speaker 3: in that time it was things like we had to
15:32
Speaker 3: do like three flash outs a day, suppositories, and then
15:38
Speaker 3: just kind of finding what worked for him at the time,
15:40
Speaker 3: so like selly massage, warm baths as well, and then
15:47
Speaker 3: like chapped wind. He found quite difficult at the time,
15:52
Speaker 3: still does sometimes, but once you know what you're dealing
15:56
Speaker 3: with and you know how that affects, like the child,
16:02
Speaker 3: then you kind of know what you need to do
16:04
Speaker 3: to kind of prevent certain things. Yeah, just learning the
16:09
Speaker 3: condition and learning how it has the different effect.
16:13
Speaker 2: Definitely, definitely, And like you said before, everyone's different with
16:17
Speaker 2: Hirsprung's y. So some things, especially with diet, diet can
16:22
Speaker 2: be diet can be a minefield. I mean that there's
16:27
Speaker 2: and it's there's no there's no real rule to it.
16:31
Speaker 2: I mean, you know, there's things that people have said
16:33
Speaker 2: to me like, oh, high fiber, low fiber, spicy stuff,
16:38
Speaker 2: et cetera, et cetera.
16:39
Speaker 3: Really, my consultant, his surgeon sorry, said the to do
16:48
Speaker 3: like a high fiber based diet, my son.
16:54
Speaker 2: That would make sense in because I was given this
16:58
Speaker 2: a similar similar advice. If you want to, I think
17:02
Speaker 2: everything to sort of travel through a lot smoother, Yeah,
17:05
Speaker 2: getting getting getting more fiber in. But then there's some
17:10
Speaker 2: obviously where things do move a lot quicker if you've
17:13
Speaker 2: got less intesting in there, so then they probably want
17:16
Speaker 2: low fiber and all of that stuff. So it's it's
17:18
Speaker 2: it can be it can be a bit of a minefield.
17:22
Speaker 2: And like you said, with the Facebook groups, which I
17:26
Speaker 2: think there's quite a few out there.
17:28
Speaker 4: Now.
17:29
Speaker 2: I know there's the main UK one, but then there's
17:32
Speaker 2: sort of I think there's an American based and there's
17:35
Speaker 2: there's several others out there, and it can be I guess,
17:41
Speaker 2: especially as you know, someone coming into that with only
17:47
Speaker 2: maybe a few years experience or maybe not even that
17:50
Speaker 2: few years experience of knowing what Hirshprung's is and they're
17:54
Speaker 2: going on the Facebook group, and sometimes it can be
17:57
Speaker 2: I mean, it can be really difficult to find any
18:01
Speaker 2: sort of meaningful posts or anything you think, right, well,
18:06
Speaker 2: that might work or this might work, because sometimes it
18:09
Speaker 2: can just be full of very specific information to that
18:15
Speaker 2: particular person, or it can be full of like horror
18:19
Speaker 2: stories or people just asking, oh, well this has gone along,
18:22
Speaker 2: so I need help, and this that there's very few
18:25
Speaker 2: people who post on there and say everything's going really well,
18:28
Speaker 2: it's all great, you know, which would be WHI should
18:32
Speaker 2: be really nice if people did. But I guess that
18:35
Speaker 2: can be a bit a bit of an issue as well.
18:40
Speaker 3: Yeah, I guess if you look at it from a
18:42
Speaker 3: different perspective, but yeah, I think obviously a lot of
18:49
Speaker 3: people use it for advice, so it makes sense for
18:54
Speaker 3: it to be from a struggle of what to do
19:00
Speaker 3: or how to go about things, or just getting other
19:03
Speaker 3: people's experience from that.
19:05
Speaker 2: Yeah, yeah, definitely, But it's it's a yeah, it's a
19:11
Speaker 2: Facebook groups are a funny one because I mean there
19:14
Speaker 2: are also there's people constantly posting on there, so you
19:17
Speaker 2: might see something thinking oh, I'll go back to that,
19:19
Speaker 2: and then I can't find it, so then I think, well,
19:24
Speaker 2: so that's yeah, it's it is a tough one.
19:26
Speaker 4: I mean, social media is great for.
19:28
Speaker 2: A lot of things, a lot of sort of some
19:31
Speaker 2: really good people out there who not necessarily give advice
19:34
Speaker 2: but sort of share their own experience and kind of
19:38
Speaker 2: take from them, whether it's you know, about Stonmas or
19:41
Speaker 2: whether it's about you know, various other stuff. But yeah,
19:44
Speaker 2: it's always I think it's being careful of which ones
19:50
Speaker 2: to follow and which advice to look at and which
19:53
Speaker 2: to sort of take or not take, or evening like
19:56
Speaker 2: that can be a bit. I mean, coming into that
19:59
Speaker 2: sort of for the first time, I bet that's yeah,
20:03
Speaker 2: I bet that's incredibly difficult.
20:05
Speaker 4: Isn't it.
20:06
Speaker 3: Yeah, again, because because it does affect everybody so differently
20:12
Speaker 3: depending on what kind of hush from you've got as well,
20:18
Speaker 3: there's obviously different advice for different types, so it can
20:22
Speaker 3: become a little bit like, oh, a bit confusing. But
20:28
Speaker 3: once you know your child and you know what you're
20:32
Speaker 3: dealing with, it does it gets a lot easier. And
20:37
Speaker 3: then it's like I used to look on the page
20:41
Speaker 3: quite a lot, and reading through it, I was like,
20:44
Speaker 3: oh my god, this is when I didn't really understand
20:46
Speaker 3: about the condition. And then now I don't need to
20:51
Speaker 3: look at it because I already I know what I'm doing,
20:53
Speaker 3: if that makes sense, So I don't I don't need
20:57
Speaker 3: to look at it. I just I know my child
20:59
Speaker 3: and I go by what my child needs.
21:02
Speaker 2: Yeah, yeah, And I think that's that's always the best way,
21:04
Speaker 2: isn't it. I mean you kind of eventually sort of
21:09
Speaker 2: find your own path and find your own way out
21:12
Speaker 2: through stuff. Did you find that through sort of research
21:19
Speaker 2: or trial and error or sort of a mixture.
21:21
Speaker 3: Of I think it was a mixture of both, but
21:27
Speaker 3: it was more so trial and error. See what worked
21:31
Speaker 3: for him. If it didn't work for him, then don't
21:35
Speaker 3: need to do it. If it does, then great, that's
21:37
Speaker 3: something that I can then bear in mind for next
21:40
Speaker 3: time and use that if it helps.
21:44
Speaker 2: Yeah, I mean, that's it's it's always the hardest, the
21:48
Speaker 2: hardest way to get answers trial and error found because
21:51
Speaker 2: you're almost I don't know, looking for the things that
21:56
Speaker 2: go wrong.
21:57
Speaker 3: Yeah, it's I mean, yeah, and i'msettin it's part of
22:01
Speaker 3: the uncertainty of not knowing as well.
22:07
Speaker 4: But yeah, absolutely it is.
22:10
Speaker 2: And you kind of because you then eat something or think, right, okay,
22:15
Speaker 2: well that worked, okay, so we'll put that on the
22:18
Speaker 2: good list and then oh we'll beat that. And that
22:20
Speaker 2: didn't work, we'll put that on the bad list and
22:21
Speaker 2: then But the other the other issue with again, when
22:25
Speaker 2: people have spoken to is then you then if something works,
22:31
Speaker 2: it doesn't always work for the rest of their life.
22:33
Speaker 4: And I certainly doesn't work. Then it doesn't always work.
22:36
Speaker 4: If that makes sense.
22:38
Speaker 2: Yeah, sometimes you know, a few months down the line,
22:42
Speaker 2: you'll then find the thing that didn't work is now
22:44
Speaker 2: something that does work. So it would be great just
22:48
Speaker 2: to have sort of a yes and no column. That
22:51
Speaker 2: would be wonderful, But I just don't think it words
22:53
Speaker 2: that's it. First problems is not for it's not for
22:58
Speaker 2: easy GID. Yeah, it just it just doesn't work like that.
23:02
Speaker 2: But have you have you found that as well or
23:04
Speaker 2: has it just.
23:05
Speaker 3: Been sort of Yeah, I did find So we use
23:11
Speaker 3: one gram suppositories and I think at the time they
23:18
Speaker 3: wanted to up it to a two gram, but it
23:22
Speaker 3: just it wasn't going very well and he was more
23:28
Speaker 3: comfortable with using the one gram, So I just said,
23:31
Speaker 3: we'll stick with that until I feel like it's not working.
23:34
Speaker 3: He might need extra like a higher dose, but at
23:38
Speaker 3: the minute, and even still now, it's not an issue.
23:42
Speaker 3: But that's probably the one thing that I can say yeah.
23:51
Speaker 2: And that's and that's the other thing I guess doings
23:54
Speaker 2: as a parent as well, is then because sometimes people say, well,
24:01
Speaker 2: you need to take this or you need to take that,
24:04
Speaker 2: But then as a parent, if you know that's not working, yeah,
24:08
Speaker 2: it's then kind of it's then trusting your instinct on
24:13
Speaker 2: your experiences and going actually, I know it says to
24:18
Speaker 2: do this or to do that in whatever, but actually
24:24
Speaker 2: in our experience it hasn't worked. And I think some
24:27
Speaker 2: of the best hospitals that I've come across will take
24:32
Speaker 2: that on board from parents rather than saying well, actually
24:36
Speaker 2: the book says this, and you need to be taking
24:40
Speaker 2: X y Z, actually listening to the parents and going
24:45
Speaker 2: well in their experience, this hasn't worked. I think some
24:48
Speaker 2: of the best hospitals have taken have very much taken
24:51
Speaker 2: that on board.
24:52
Speaker 3: Yeah, and that's yeah, that's definitely a good thing, especially
24:58
Speaker 3: when hushbruings. As we were saying before, it's such a
25:01
Speaker 3: broad condition and affects everybody very differently.
25:06
Speaker 2: So yeah, yeah, and I think it's it's like you
25:12
Speaker 2: said before, with the the issues you said with the
25:16
Speaker 2: hospital about sort of the misleading or poor communication, you
25:22
Speaker 2: know that that really doesn't help.
25:25
Speaker 4: And then.
25:28
Speaker 3: Yeah, it just added an extra layer of stress because
25:32
Speaker 3: I was actually told at the time, oh, no, it's fine,
25:35
Speaker 3: like you can actually go home. So I was packing
25:38
Speaker 3: our stuff, getting ready to go home, and then another
25:41
Speaker 3: consultant came in and was like, where are you going?
25:44
Speaker 3: And I was like, I'm going home. The doctor just
25:47
Speaker 3: said that it was fine, and he was like, no,
25:50
Speaker 3: you can't go anywhere. Your son needs us needs surgery.
25:54
Speaker 3: And I was like, but he's just said I was
25:57
Speaker 3: so confused, but he's just said that, And then he
26:00
Speaker 3: put his hand on my shoulder and said, listen, I'm
26:03
Speaker 3: the lead consultant and I'm telling you that your son
26:06
Speaker 3: needs to stay he needs to have surgery.
26:10
Speaker 2: So like, yeah, it doesn't help.
26:13
Speaker 3: No, And I was just I was like, what the
26:16
Speaker 3: hell is going on? I was so confused. But yeah,
26:20
Speaker 3: then after that, he because I explained to him about
26:25
Speaker 3: my concerns, and I got quite upset at the time
26:29
Speaker 3: because I was like, I don't know what's going on,
26:31
Speaker 3: and it sounds like you have no idea what's going
26:33
Speaker 3: on either, So that's for me, doesn't make me feel
26:36
Speaker 3: very secure in what you're doing.
26:39
Speaker 4: And then.
26:42
Speaker 3: That's when I met my son's surgeon that he's still
26:45
Speaker 3: got now and she kind of took over his care.
26:48
Speaker 3: And to be fair, she has been really great with
26:52
Speaker 3: him anything that he needs or any check up or
26:56
Speaker 3: if I need to speak to her, like she's always there,
26:59
Speaker 3: like ready to like talk about whatever it is that
27:04
Speaker 3: he needs.
27:05
Speaker 4: That's really good.
27:06
Speaker 2: But yeah, again that that can't have been That can't
27:10
Speaker 2: have been any good for your stress and anxiety when
27:13
Speaker 2: you're getting you know, two different, two different stories from
27:18
Speaker 2: people saying well, and again it's that thing. Having been
27:22
Speaker 2: in hospital myself several times, when you told you can
27:26
Speaker 2: go home, you have that sort of slight euphoria. Oh, yes,
27:31
Speaker 2: I'm going home now. I did start up, I'm ready,
27:35
Speaker 2: I'm you know, mentally already in the car traveling down
27:38
Speaker 2: the motorway.
27:39
Speaker 3: Yeah.
27:40
Speaker 2: And then to be told oh no, no, no, you're
27:44
Speaker 2: you're staying. That's a bit crushing, and especially you know
27:50
Speaker 2: you're not just staying for like overnight observation or whatever,
27:54
Speaker 2: you're actually staying because your suddenly surgery.
27:57
Speaker 3: Yeah.
27:58
Speaker 2: I mean, I can't imagine how you kind of go
28:01
Speaker 2: from that sort of going up and then going back
28:04
Speaker 2: down again.
28:05
Speaker 4: I mean, that can't have helped.
28:07
Speaker 3: No, it wasn't great.
28:10
Speaker 4: And then.
28:12
Speaker 3: Yeah, it was just a lot At the time, I
28:14
Speaker 3: was post c section, so it's still in quite a
28:18
Speaker 3: bit of pain from that, like kind of getting over
28:22
Speaker 3: that point. So yeah, very it was quite difficult. But
28:30
Speaker 3: I had got very supportive family, so I'm quite lucky
28:34
Speaker 3: that my sisters and my mum were very present kind
28:40
Speaker 3: of during that time.
28:42
Speaker 2: That's really andy, very very andy. To have a support
28:46
Speaker 2: around you and to have a sort of community around
28:50
Speaker 2: you really really helpful, I can imagine, especially when especially
28:55
Speaker 2: when you don't really know what's going on, you haven't
28:58
Speaker 2: had that communication or.
29:01
Speaker 4: You know.
29:02
Speaker 2: Again, I've spoken to so many parents and people when
29:06
Speaker 2: you have a child diagnosed with a very rare condition
29:12
Speaker 2: that nobody's really heard of. Yeah, not outside of our
29:17
Speaker 2: bubble anyway, nobody's really heard of it. So that can
29:21
Speaker 2: be really, really tough. So to have that support is fantastic,
29:25
Speaker 2: I imagine.
29:26
Speaker 3: Yeah, it was great staying. This is one thing that
29:31
Speaker 3: I don't like about hospitals is the policy for staying
29:36
Speaker 3: at the hospital overnight. You only allowed one parent with
29:40
Speaker 3: the child. And I think I found that really difficult
29:47
Speaker 3: at the time because I wasn't aware of what's going on.
29:50
Speaker 3: I was getting told different information. I just didn't feel
29:55
Speaker 3: like I was in a secure place, like I needed
29:58
Speaker 3: somebody to be with me, to like almost speak up
30:02
Speaker 3: for me to some extent, because I was not really there,
30:05
Speaker 3: but I was there.
30:06
Speaker 2: If that makes sense, that makes absolute sense, I know,
30:10
Speaker 2: and there'll be a lot of people listening who will go, yes,
30:12
Speaker 2: I know exactly what you mean.
30:14
Speaker 4: You're physically present, You're not really yeah.
30:18
Speaker 3: And even like little things, I felt like I was
30:22
Speaker 3: not doing great and I was sailing as a mum
30:25
Speaker 3: because getting up after a C section and things like
30:31
Speaker 3: that can still be quite difficult and you're a little
30:34
Speaker 3: bit unsteady, like picking up baby or whatever it is
30:39
Speaker 3: that you're doing. And I couldn't reach the cool bell
30:44
Speaker 3: at the time, so it was like the opposite side
30:47
Speaker 3: of the bed. And then I remember the hospital saying, well,
30:51
Speaker 3: the policy is this, and you're not allowed to have
30:53
Speaker 3: anybody stay, and I was thank God, like, I can't
30:56
Speaker 3: reach the bell. So if if I need somebody to
31:00
Speaker 3: me in to support my son because I physically can't
31:04
Speaker 3: get up or whatever the situation is, then like, how
31:10
Speaker 3: does that happen? And Oh, it's fine, we can just
31:13
Speaker 3: come in and check. No, I'm not really, it's just
31:18
Speaker 3: a little bit difficult to trust that when the things
31:21
Speaker 3: prior that had happened. So yeah, that's not good. Yeah,
31:30
Speaker 3: really it really affected me at the time. And then
31:35
Speaker 3: a couple of nights they let my sister stay and
31:41
Speaker 3: then we got told that we were getting discharged, and
31:43
Speaker 3: then we didn't get discharged, and then she wasn't allowed
31:46
Speaker 3: to stay and she was allowed to stay, and I
31:48
Speaker 3: was like, just during this time, please can I just
31:51
Speaker 3: have somebody. I was in a side room as well,
31:53
Speaker 3: so like there was plenty of space, and my sister
31:56
Speaker 3: even said that she's happy to sleep on a chair.
31:59
Speaker 3: She just wanted to be there to support me at
32:01
Speaker 3: the time. But yeah, it just it was great. I
32:06
Speaker 3: remember somebody coming in when they've done like a shift swap,
32:12
Speaker 3: and just the way that I've spoken to I just
32:17
Speaker 3: burst out crying and I was like, this is just not,
32:20
Speaker 3: this is not I don't like if I want to
32:24
Speaker 3: go at home.
32:25
Speaker 2: No, it was sort of like a what lack of empathy,
32:29
Speaker 2: I guess, lack of empathy, lack of compassion.
32:31
Speaker 3: Yeah, but again, as I said, although I haven't had
32:39
Speaker 3: the best experience during that period of time, since then,
32:45
Speaker 3: like we've moved forward. I spoke with the ward manager
32:51
Speaker 3: and we had a meeting and kind of since then,
32:54
Speaker 3: things have been a lot, a lot smoother, which I'm
32:57
Speaker 3: really grateful for. And I'm glad that because I was
33:01
Speaker 3: gonna rougher my son's care as well, but I don't
33:06
Speaker 3: actually drive, so it would be a little bit difficult
33:08
Speaker 3: for me. And then after speaking to his surgeon, I thought, well,
33:13
Speaker 3: the most important.
33:14
Speaker 1: Thing is.
33:16
Speaker 3: His surgeon knows him. She's very good at what she does,
33:21
Speaker 3: her team are very good. It's just the ward that
33:25
Speaker 3: I don't like, but I'm not I'm obviously not in
33:28
Speaker 3: a C section and not just had a C section anymore,
33:31
Speaker 3: so I can do the care, if that makes sense.
33:34
Speaker 3: Like so, I didn't really need much of their input
33:38
Speaker 3: in that sense. I was happy to do it myself.
33:41
Speaker 4: Yeah.
33:41
Speaker 2: No, let's say it's good that things have moved forward though, Yeah,
33:45
Speaker 2: because that could be Yeah, that could be tough.
33:47
Speaker 4: Otherwise I was thinking as well.
33:50
Speaker 2: And I know you said, yeah, the only you can
33:53
Speaker 2: only have one person staying and all of that stuff.
33:57
Speaker 2: And I wonder how long that policy has been placed
33:59
Speaker 2: where that's that's still a leftover from a COVID thing.
34:02
Speaker 2: I don't know. I'm just purely guessing.
34:04
Speaker 3: I think a lot of it does come from COVID,
34:07
Speaker 3: if I remember correctly, because my both my sisters work
34:15
Speaker 3: within the NHS as well.
34:16
Speaker 1: So that's handy.
34:19
Speaker 4: That's handy.
34:19
Speaker 2: We said about community having people who are working in
34:24
Speaker 2: the medical field. Again, might not be necessarily trained in
34:28
Speaker 2: hirshprungs and knowing all about hirshprungs, but having people in
34:31
Speaker 2: the medical field, I imagine is yeah, very very beneficial.
34:36
Speaker 4: Yeah, definitely, very very beneficial.
34:40
Speaker 2: But Yeah, No, it's it's it's it's sad when it
34:44
Speaker 2: when you get kind of messed around a little bit
34:48
Speaker 2: and you have that sort of misleading. But I guess
34:51
Speaker 2: it can be a lot better when you have do
34:57
Speaker 2: you say you now got under the surgeon care? Is
35:00
Speaker 2: that is she now taking care of like everything, so
35:03
Speaker 2: just one voice or is it still sort of quite
35:06
Speaker 2: a few with the team.
35:08
Speaker 3: There's still quite a few people within the team. So
35:11
Speaker 3: she's got there's obviously her, the registrars, and then the
35:17
Speaker 3: secretaries that obviously do the admins side of things for them.
35:22
Speaker 3: Nine times out of ten I speak to them, and
35:25
Speaker 3: I've also got the number four like the ward, so
35:30
Speaker 3: if I did need to call the ward for anything,
35:31
Speaker 3: then they can pass on messages to them if I
35:34
Speaker 3: couldn't get hold of the receptionist, for example.
35:38
Speaker 4: Brilliant.
35:39
Speaker 2: No, that's good to hear, really good to hear. And
35:41
Speaker 2: I know you said your son's doing really well at
35:43
Speaker 2: the moment, which is fantastic and really really good to hear.
35:47
Speaker 4: Yeah.
35:48
Speaker 2: So in terms of like the future, what do you
35:53
Speaker 2: see and what do you kind of hope for.
35:58
Speaker 3: I don't I think it's one of those things I
36:00
Speaker 3: don't really know what to expect. But I mean if
36:07
Speaker 3: he just continues the way that he is, then I
36:11
Speaker 3: don't have any doubt that there'll be an issue. Growing
36:18
Speaker 3: up in Hirshprungs they children have more surgery. Is that correct?
36:25
Speaker 1: Is it.
36:27
Speaker 4: Depends on who it is.
36:29
Speaker 2: I mean there have been people I've spoken to who've
36:32
Speaker 2: had literally just the pull through and that's it. And
36:36
Speaker 2: there's been there's somebody I've spoken to who's had one
36:38
Speaker 2: hundred and fifty surgeries and.
36:40
Speaker 4: Everybody in between.
36:42
Speaker 2: So it's like we said before, it's dependent on so
36:46
Speaker 2: different in everywhere. I mean I thought I was, you know,
36:49
Speaker 2: unlucky in having ten, but there have been people have
36:51
Speaker 2: had way more than me and way less. So yeah,
36:56
Speaker 2: it's yeah, it's a difficult one to answer that one.
36:59
Speaker 3: Oh yeah, I mean so far, so good. If he's
37:04
Speaker 3: not needing the boatox, I guess that's the first thing
37:08
Speaker 3: that you know, they're going in a step in the
37:11
Speaker 3: right direction. So I just hope for that, I guess,
37:15
Speaker 3: keep stepping in the correct direct in the right direction.
37:18
Speaker 2: Yeah, just keep clind of, Yeah, keep staying as is.
37:22
Speaker 2: Which is it's an interesting one because I think there
37:28
Speaker 2: are some people that go, oh, well, you know, I
37:30
Speaker 2: want to keep moving forward or keep don't wanting to
37:33
Speaker 2: achieve this thing, And sometimes actually there's another side to it,
37:39
Speaker 2: which is actually just staying where you are is actually
37:43
Speaker 2: a really good way. Staying where you are is a
37:46
Speaker 2: positive if that makes sense.
37:47
Speaker 3: Yeah, yeah, I understand what you mean without too much
37:52
Speaker 3: pressure on to trying to do other things as such.
37:57
Speaker 2: Yeah, no, no, but that's really really good to hear
38:00
Speaker 2: he's doing well, and it's been really really glad to had,
38:04
Speaker 2: really really good to have you on. I've learned quite
38:06
Speaker 2: a lot from this episode, which is fantastic. Always love
38:10
Speaker 2: learning new things. But no, thank you so so much
38:14
Speaker 2: for coming on. Thank you so much for having me
38:17
Speaker 2: no pleasure for sharing your son's story, and I wish
38:21
Speaker 2: obviously you and your son all the very very best
38:24
Speaker 2: for the future.
38:25
Speaker 3: Thank you you too.
38:30
Speaker 1: Thank you for listening and being part of this growing community.
38:33
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
38:36
Speaker 1: leave a review and share it with someone who might
38:39
Speaker 1: need it. You can connect with us on social media
38:42
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
38:47
Speaker 4: See you next week,