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Episode 144 - With Helen · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirschsprungs 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. Hello and welcome to episode 144 of Tom's
0:50
Speaker 1: Hirschsprung's podcast. I'm delighted this morning to be joined by Helen. Helen,
0:55
Speaker 1: welcome to the podcast.
0:59
Speaker 2: Good morning and I'm so pleased to be here.
1:02
Speaker 1: Thank you. Thank you so much for joining me. We're
1:05
Speaker 1: here to chat, well, about lots of different things, but
1:09
Speaker 1: about your son's journey with Hirschsprungs. He's an adult now.
1:14
Speaker 1: And we're here to chat about his story. So over
1:19
Speaker 1: to you. Start from wherever you feel comfortable.
1:24
Speaker 2: Well, I suppose I should start from the beginning.
1:28
Speaker 3: My.
1:31
Speaker 2: As you say he's an adult now he's given me
1:36
Speaker 2: permission to share his story in an anonymous way he
1:44
Speaker 2: was I'd already had two daughters neither of whom had
1:51
Speaker 2: Hirschsprung disease and like many other parents we had never
1:56
Speaker 2: heard of Hirschsprung disease he was born at home in
2:03
Speaker 2: a planned home birth. Um, I'd had easy pregnancies, um, and, uh,
2:10
Speaker 2: easy births to be honest. Um, and he, uh, was
2:15
Speaker 2: born at home, um, on the carpet in a planned
2:19
Speaker 2: delivery and everything seemed fine. And, um, he, uh, fed,
2:26
Speaker 2: fed well and, um, I began to breastfeed straight away.
2:33
Speaker 2: The first inkling that we had that something might be
2:39
Speaker 2: wrong was overnight, he didn't wake to feed, which was,
2:45
Speaker 2: in my experience, really weird. And then in the morning,
2:50
Speaker 2: there was this little, a small amount of bright green
2:55
Speaker 2: vomit on the sheet. And then we went along at
3:01
Speaker 2: home um he he was still feeding but there was
3:06
Speaker 2: no sign of him actually passing anything and again there
3:14
Speaker 2: was a little bit of confusion between myself and the
3:17
Speaker 2: midwives as to whether he'd actually passed meconium but um
3:22
Speaker 2: looking back on it i think he probably hadn't um
3:25
Speaker 2: but To all intents and purposes, he remained well, and
3:29
Speaker 2: he kept being seen by the GP. And eventually, after
3:35
Speaker 2: 10 days, I think it was, we were then admitted
3:42
Speaker 2: to the children's hospital. We're based in Scotland, and we
3:51
Speaker 2: were fortunate, although we live very rurally, relatively near a
3:58
Speaker 2: children's hospital. So that was a real sort of surprise
4:06
Speaker 2: to us and it was only then that we realised
4:10
Speaker 2: the seriousness of the situation. We were very fortunate in
4:18
Speaker 2: that we had a new relatively newly qualified surgeon who
4:28
Speaker 2: was experienced in Hirschsprung disease and identified what was going
4:36
Speaker 2: on pretty quickly and was keen to do a one
4:40
Speaker 2: stage pull through and at that stage in the late
4:46
Speaker 2: 90s this I believe is only the sort of start
4:49
Speaker 2: of one stage pull throughs so we were sent home
4:54
Speaker 2: to do rectal washouts. And a lot of this will
4:56
Speaker 2: be familiar now to new parents. But unfortunately, after approximately
5:06
Speaker 2: a fortnight of doing rectal washouts, then he developed necrotizing enterocolitis.
5:15
Speaker 2: And we were rushed. I was rushed into hospital with him.
5:22
Speaker 2: And that really was the start of a long and
5:27
Speaker 2: quite bumpy road over the early years with constant bouts
5:34
Speaker 2: of enterocolitis. He had stoma formed in an emergency overnight
5:41
Speaker 2: operation and was very, very ill. And again, this isn't
5:46
Speaker 2: something that I've visited often. revisited for a long time,
5:50
Speaker 2: but it's still as clear as day that time. So
6:00
Speaker 2: moving on from that, then medically things were tricky and
6:08
Speaker 2: there were repeated hospital admissions, but And we had a
6:16
Speaker 2: lot with a stoma with two other young children to
6:22
Speaker 2: deal with in the house. So trying to keep our
6:26
Speaker 2: careers going, jobs going, all of that was pretty hard going.
6:35
Speaker 2: And it wasn't just difficult for... My son, who was
6:41
Speaker 2: very small and obviously had no recollection of that, but
6:45
Speaker 2: also our two daughters, who were dealing with constant absences
6:50
Speaker 2: of their parents and being pushed from pillar to post
6:54
Speaker 2: in terms of childcare and family care.
7:00
Speaker 1: Yeah, definitely. I can imagine that it's something that, I guess,
7:07
Speaker 1: I don't talk about a lot on here, but the
7:09
Speaker 1: impact on siblings obviously can be quite a bit because
7:17
Speaker 1: you are sort of trying to juggle everything. And I
7:22
Speaker 1: can imagine that's incredibly difficult.
7:27
Speaker 2: I think that's something that we don't think about perhaps
7:34
Speaker 2: enough as a Hirschsprung community because the child that is
7:40
Speaker 2: ill with, you know, what in our circumstances became a
7:45
Speaker 2: really chronic condition, there's often the feeling that they're getting
7:50
Speaker 2: all the attention and you're trying also to support the
7:56
Speaker 2: other siblings. I mean, I just remember that my daughter, um,
8:03
Speaker 2: you know, she could make scrambled egg in the microwave
8:06
Speaker 2: at two and a half. She, she used to have
8:08
Speaker 2: to get her own tea. Um, she, you know, would
8:12
Speaker 2: cling onto my back cause I was trying to, you know, change, um,
8:16
Speaker 2: stoma bags. And, um, it was, it, you know, it
8:20
Speaker 2: was really, really difficult, difficult for them and trying to
8:24
Speaker 2: understand what, you know, what, what was going on. Um,
8:29
Speaker 2: so yeah I think I think siblings is something that
8:32
Speaker 2: I'm very um thinks very important to try and support
8:37
Speaker 2: siblings um and yeah the impact on them was significant
8:43
Speaker 2: and they always talk about well still to this day
8:47
Speaker 2: talk about holidays that were ruined uh you know by
8:52
Speaker 2: by my son being ill and you know, the planning
8:56
Speaker 2: that had to go into things, things that we couldn't do.
8:59
Speaker 2: And also, you know, we laugh about it now, but,
9:04
Speaker 2: you know, on one occasion, one child was sent to
9:09
Speaker 2: an outdoor camp without a coat. And another occasion, one
9:15
Speaker 2: of the children was just left standing at the swimming
9:17
Speaker 2: pool after swimming lessons because we'd been held up because
9:22
Speaker 2: our son was vomiting somewhere. and that just was a
9:30
Speaker 2: constant uncertainty in their lives growing up when was the
9:39
Speaker 2: next time that their parents would disappear off to the
9:43
Speaker 2: sick kids hospital with their brother however we were however,
9:54
Speaker 2: incredibly fortunate in that I think I'd been with my
10:00
Speaker 2: partner a long time and you know I think if
10:06
Speaker 2: our son had been our first child I really wonder
10:10
Speaker 2: what would have happened because it does put an incredible
10:14
Speaker 2: pressure on your relationship and but Also knowing what it's
10:20
Speaker 2: like to have a child, a baby, and then you're
10:28
Speaker 2: into your routines and so on is helpful, but nothing
10:34
Speaker 2: really prepares you for having a child with a serious illness.
10:43
Speaker 2: But we got through it and we were lucky. with
10:48
Speaker 2: our jobs, for example, that we were able to take
10:53
Speaker 2: time off and alternate who was in hospital in later years,
10:59
Speaker 2: not obviously at the beginning when I was feeding.
11:04
Speaker 1: Yeah, most definitely. I mean, it's a really interesting point
11:07
Speaker 1: you make, actually, when you talk about external factors whether
11:15
Speaker 1: it be siblings or parent relationships because again a lot
11:20
Speaker 1: of people quite understandably come on here they talk about
11:25
Speaker 1: their whether it be their son or their daughter and
11:28
Speaker 1: they talk about the the condition and focus only on
11:32
Speaker 1: on one person and I'm totally understandably but it does
11:37
Speaker 1: have a wider impact that I guess at the time
11:40
Speaker 1: is it's so difficult to try and um think of
11:45
Speaker 1: everybody all at once and i think i don't think
11:47
Speaker 1: it's even possible um so like you said you know
11:51
Speaker 1: with with things that happened um with with other children
11:56
Speaker 1: because you're so you you have to sort of prioritize
12:00
Speaker 1: and go well my my son's you know throwing up
12:03
Speaker 1: so i can't do this and i can't do that
12:05
Speaker 1: because i have to to be here i mean totally
12:08
Speaker 1: understandable um but yeah like like you said um does
12:13
Speaker 1: have that that wider impact and i think yeah that's
12:17
Speaker 1: a really really important point you make really really important
12:20
Speaker 1: but i'm well aware i think i cut you off
12:22
Speaker 1: about midway through your story so i'm sorry about.
12:23
Speaker 2: That no that's that that's that that's absolutely fine um
12:29
Speaker 2: i i was i think i think as well that
12:32
Speaker 2: the fact that um with my sense um journey um really,
12:41
Speaker 2: as it wasn't straightforward and moved on into really right
12:47
Speaker 2: through out into his teenage years where illness would disrupt
12:52
Speaker 2: family events. So there were big ticket things like weddings and.
12:59
Speaker 3: A big trip that one of my daughters was doing
13:07
Speaker 3: with an orchestra overseas.
13:10
Speaker 2: We were all booked to go. And then my son,
13:15
Speaker 2: age 14, was hospitalized. And then, you know, that was it.
13:21
Speaker 2: The whole thing had to get canned because we had
13:24
Speaker 2: to stay in the UK. Now that, you know, to
13:29
Speaker 2: others that may seem, you know, quite obvious. But the
13:35
Speaker 2: impact that those sort of things has on us, siblings
13:40
Speaker 2: growing up that yet again almost into their adolescence this
13:44
Speaker 2: is impacting on their whole role in the family however
13:50
Speaker 2: I shouldn't be too negative about that because um I
13:53
Speaker 2: think uh both of my daughters are now um studied
13:59
Speaker 2: medicine and um are doctors and um you know I'm
14:05
Speaker 2: so so proud of them um that they've done what
14:09
Speaker 2: they've done. And some of that is due to the
14:11
Speaker 2: exposure that they had to hospitals and medicine throughout their
14:18
Speaker 2: childhood and growing up.
14:21
Speaker 1: Yeah, most definitely. I dare say it must have definitely
14:27
Speaker 1: helped them in their careers now that they knew so
14:33
Speaker 1: many medical terms growing up and I guess if they
14:37
Speaker 1: do ever have a patient that comes across with Hirschsprungs,
14:41
Speaker 1: they'll know it exactly, which I guess not a lot
14:47
Speaker 1: of doctors do.
14:48
Speaker 2: Yeah, I think that is an important point. And I
14:53
Speaker 2: think in terms of spreading the message, I've been fortunate
15:00
Speaker 2: enough to have been invited to speak to junior doctors
15:04
Speaker 2: and doctors I'm always saying, please listen to the parent.
15:11
Speaker 2: This is a really unusual disease and it is not
15:16
Speaker 2: constipation when a child presents in A & E. It's
15:25
Speaker 2: not with the diagnosis of Hirschsprung disease anyway. And interestingly,
15:31
Speaker 2: I was kind of looking back through my son's notes
15:34
Speaker 2: recently and it's at many admissions on the Clarking Inn,
15:38
Speaker 2: a junior doctor had written, constipation, constipation. And then on
15:45
Speaker 2: another note, the consultant surgeon had written, this is not,
15:55
Speaker 2: in big letters, constipation. And he had been admitted for
16:03
Speaker 2: an enterocolitis, but it was... which was presenting as an obstruction. Um,
16:09
Speaker 2: but again, so that's, that's one message that I'd like
16:13
Speaker 2: to get out loud and clear. Um, and I was
16:17
Speaker 2: really pleased to see that the team that we were under, uh, was,
16:25
Speaker 2: was clear on that, but it all also depends on, uh,
16:29
Speaker 2: being able to advocate for your child and, and, uh,
16:34
Speaker 2: and talk about these things to the medical, the more
16:41
Speaker 2: junior medical professionals anyway. Yeah.
16:45
Speaker 1: No, but that's fantastic. Absolutely fantastic that you were invited
16:48
Speaker 1: to and going to chat to them about it because
16:52
Speaker 1: it's something that I've seen a lot on here and
16:56
Speaker 1: will always advocate for is parental instinct. And, you know,
17:02
Speaker 1: knowing that something isn't quite right. And I think that's
17:05
Speaker 1: so important. But that's fantastic news that you got to
17:10
Speaker 1: chat to junior doctors.
17:11
Speaker 2: It's brilliant. I think the parental instinct thing is a
17:19
Speaker 2: fine balance, if we can talk a little bit about that, perhaps.
17:24
Speaker 2: Because That has developed in me over the years. At
17:30
Speaker 2: the beginning, I was looking for lots and lots of answers,
17:34
Speaker 2: and I was reading a lot. My son's journey wasn't straightforward.
17:39
Speaker 2: I think I may have said to you, he did
17:42
Speaker 2: have a pull-through, his first pull-through at 10 months, and
17:50
Speaker 2: then followed by a stoma, and he never really... that
17:55
Speaker 2: was never really very successful for many different reasons, which
17:59
Speaker 2: I don't want to go into too much because I
18:01
Speaker 2: don't want to give any indication that this was in
18:05
Speaker 2: any way the norm for other parents, but then ultimately
18:09
Speaker 2: did have a redo pull through at three months because
18:16
Speaker 2: it was determined that there was still a ganglionic bowel
18:20
Speaker 2: that had been pulled through. And at that time, I
18:24
Speaker 2: spent a lot of time reading, and this book is
18:29
Speaker 2: really well-thumbed. It's Persh Thumb's Disease and Airline Disorders. You
18:34
Speaker 2: might have seen it. It's kind of the definitive textbook.
18:39
Speaker 2: Goodness knows what edition it's on now. This is the
18:44
Speaker 2: second edition. But I bought that at the time because
18:46
Speaker 2: I thought, you know, it's really going to be important
18:49
Speaker 2: going forward to try and set the context for my
18:53
Speaker 2: son in life. and explain why we made all these
18:57
Speaker 2: decisions at the time. And I spent a lot of
19:00
Speaker 2: time reading papers and so on. And I'm not scientifically
19:05
Speaker 2: trained at all. I've got an arts background. And at
19:15
Speaker 2: that point, I thought I knew a lot. But since then,
19:25
Speaker 2: And with my daughter's training and so on, I just
19:31
Speaker 2: realized that I knew nothing. I was trying to be
19:38
Speaker 2: informed to help us make a decision whether a redo
19:42
Speaker 2: pull-through was right, but I didn't necessarily have the overarching framework,
19:49
Speaker 2: if that's the way to put it, of all the
19:51
Speaker 2: scientific background to be able to fully understand everything. And
19:56
Speaker 2: in the end, I think you've got to be guided
19:59
Speaker 2: and trust professionals. But your instinct as to whether your
20:04
Speaker 2: child is sick is always something that you should go
20:09
Speaker 2: rely on because you know your child best and when
20:14
Speaker 2: your child's had multiple bouts of enterocolitis you know when
20:22
Speaker 2: enterocolitis is coming and I've heard other people speaking about
20:28
Speaker 2: this on your podcast it presents in lots of different
20:32
Speaker 2: ways and again my son never had a often never
20:38
Speaker 2: had a fever with an enterocolitis, but it wasn't a
20:43
Speaker 2: normal vomiting bug. So yeah, trust your instincts, get informed,
20:51
Speaker 2: but unless you're a medical professional, just kind of caution,
20:59
Speaker 2: because I think looking back on it, we were so
21:07
Speaker 2: lucky in a relatively small hospital that we had some
21:14
Speaker 2: really preeminent surgeons and latterly gastroenterologists. And sometimes there was
21:23
Speaker 2: quite rude to people because I was worried and cross,
21:28
Speaker 2: but they were very knowledgeable and we were very lucky
21:33
Speaker 2: that they, um, were so skilled in what they did.
21:39
Speaker 1: Definitely. Definitely. And I think, as you said at the
21:45
Speaker 1: beginning of the story, to have a surgeon who knows
21:48
Speaker 1: what Hirschsprung's is, I mean, must be a blessing because
21:52
Speaker 1: the amount of, you know, whether it be GPs, surgeons, and,
21:55
Speaker 1: you know, nobody can know everything about everything. This isn't
21:58
Speaker 1: me saying, well, they should know and this, that, the other,
22:01
Speaker 1: but it's, that must have been very important to know
22:06
Speaker 1: that they'd even heard of the condition.
22:12
Speaker 2: Yeah, absolutely. And again, the smaller the centre, the fewer
22:19
Speaker 2: the cases, if any, of Hirschsprung disease that they might
22:22
Speaker 2: have in any one given year. And that's something that, again,
22:29
Speaker 2: until you end up joining this club that you're never
22:33
Speaker 2: asked to join, you don't appreciate.
22:38
Speaker 1: No, not at all. But yeah, it's an interesting point
22:46
Speaker 1: you made as well about the sort of transition into
22:49
Speaker 1: adulthood and about when sort of around that sort of 14,
22:55
Speaker 1: 15 year age and sort of when you said your
22:58
Speaker 1: son's story isn't straightforward, was he still sort of impacted
23:05
Speaker 1: by the condition at that age or had symptoms sort
23:07
Speaker 1: of lessened off?
23:09
Speaker 2: Yeah, so I think it's been quite a roller coaster.
23:14
Speaker 2: So the second pull through was not, I wouldn't consider,
23:24
Speaker 2: success is very difficult to define for someone with Hirschsprung.
23:29
Speaker 2: And you're always looking for answers. You're always looking for
23:32
Speaker 2: a definitive solution. That was the case now for us anyway.
23:39
Speaker 2: And so my son had a stoma and the redo
23:47
Speaker 2: pull through. He was always very well with the stomas.
23:51
Speaker 2: And then after the redo, things... He remained well, but
24:04
Speaker 2: there were still washouts and interventions to do. He then really.
24:13
Speaker 3: It.
24:15
Speaker 2: Was determined eventually that he had more complex gut motility
24:21
Speaker 2: as a result of having Hirschsprung disease. And he would
24:27
Speaker 2: go on to... need washouts for a period of seven
24:32
Speaker 2: years and again we've been speaking about impact on family
24:36
Speaker 2: life but he he just got on with that and
24:41
Speaker 2: managed that all that very well and he was really
24:46
Speaker 2: well supported in in school and to do that and
24:53
Speaker 2: and throughout his prime primary school and he managed to
25:03
Speaker 2: compete at judo and he had the most fantastic and
25:08
Speaker 2: supportive judo club and a really good community there that
25:12
Speaker 2: understood when he wasn't well that understood that he had
25:16
Speaker 2: to work his training around his regime and so he
25:27
Speaker 2: really managed well up until coming into his early teenage
25:34
Speaker 2: years when he's still still struggling then really with the
25:40
Speaker 2: motility issues and we started really looking for more answers
25:45
Speaker 2: could anything else be done and he ended up being
25:52
Speaker 2: hospitalized with unknown sort of pseudo obstructions and it was
26:01
Speaker 2: everybody was looking for reasons but none really could be
26:06
Speaker 2: found um and then we i think again i think
26:15
Speaker 2: it may have been spoken about on your podcast and
26:18
Speaker 2: then before um hit here well certainly was that the
26:25
Speaker 2: sorry i'm I'm going back a bit on this, but
26:27
Speaker 2: certainly at the Hirschsprung disease recent awareness day, there was
26:34
Speaker 2: talk of the transition to adulthood and also the fact
26:38
Speaker 2: that children are usually dealt with by a surgeon in
26:47
Speaker 2: their childhood. But then during this transition to the adult service,
26:53
Speaker 2: There's some sort of often overlap with gastroenterology. And then
26:58
Speaker 2: at that time for us, we're seeking the gastroenterologist and
27:05
Speaker 2: the surgeon started working together, which was really good. But
27:09
Speaker 2: then the handover into the adult service just really didn't
27:15
Speaker 2: happen particularly well. The surgeon that he was dealing with
27:20
Speaker 2: left And then waits for gastroenterology were long. And at
27:26
Speaker 2: this period, he was, excuse me, he was suffering from
27:36
Speaker 2: absolutely relentless nausea. He had various tests which showed that
27:45
Speaker 2: there was delayed gastric, some delayed gastric emptying. Nobody was
27:54
Speaker 2: able to really get on top of the nausea. Excuse me.
28:06
Speaker 2: And that really continued throughout that period. And we were
28:13
Speaker 2: looking for answers. Everybody was looking for answers. Different medications
28:20
Speaker 2: were tried. I mean, and that's where some of the
28:30
Speaker 2: research and documentation that I had done started to come
28:35
Speaker 2: into its own because I was always looking for answers,
28:41
Speaker 2: but I was always trying to think, you know, what
28:44
Speaker 2: skills do I have that I can bring to try
28:47
Speaker 2: and help this? And I was a bureaucrat by career
28:52
Speaker 2: as a civil servant, so I was, I was, my
28:56
Speaker 2: skill set really was writing letters, was documenting things down
29:00
Speaker 2: by carefully going through things. So I got access to, um,
29:06
Speaker 2: my son's, uh, hospital notes because I, I felt that
29:09
Speaker 2: this was absolutely critical going forward because later in life,
29:13
Speaker 2: how do you know what's happened? You know, hospital notes
29:16
Speaker 2: on paper, uh, uh, have got a real, um, You know,
29:21
Speaker 2: they can easily go missing, bits can get lost. So
29:25
Speaker 2: I went and documented all that and wrote it all down. So,
29:32
Speaker 2: you know, I have like a whole sheet here.
29:35
Speaker 5: And stuff, and I got copies of notes and biopsies
29:39
Speaker 5: and all that sort of stuff um and in a
29:43
Speaker 5: way that was my way of coping but when we're
29:46
Speaker 5: looking for when the uh medics were looking for answers
29:53
Speaker 5: uh for the nausea going forward, this was.
29:58
Speaker 2: All readily available and a reminder of what had gone
30:07
Speaker 2: on in the past. And also kind of a reminder
30:10
Speaker 2: as to how compromised his gut had been with things
30:15
Speaker 2: like necrotizing enterocolitis and also he'd had surgeons he'd had
30:22
Speaker 2: adhesions and surgery for adhesions and so on which when
30:26
Speaker 2: you're looking at something in a snapshot in a very
30:29
Speaker 2: short hospital appointment as in transitioning to the adult service
30:34
Speaker 2: and in the adult service you don't necessarily remember or
30:39
Speaker 2: forget that that that that that might be relevant might
30:43
Speaker 2: be relevant so that was a positive that is something
30:49
Speaker 2: if you can bear it, I would recommend.
30:53
Speaker 3: Doing.
30:55
Speaker 1: Absolutely. Absolutely. I think you're absolutely right there. It's having, again,
31:01
Speaker 1: like you said, having the knowledge of that and obviously
31:06
Speaker 1: doing a little bit of research beforehand obviously was of
31:12
Speaker 1: great importance and obviously became a real help to you.
31:17
Speaker 2: Yeah, I think there's that. And also in the transition,
31:24
Speaker 2: then the difficulty is knowing when to.
31:29
Speaker 4: Let go and how to let go and also helping
31:36
Speaker 4: your adult child.
31:42
Speaker 2: Negotiate the service without you being there at appointments necessarily.
31:52
Speaker 2: And that's quite difficult. And again, I listened to a
32:00
Speaker 2: talk recently where parents and carers were being asked to
32:12
Speaker 2: teach your child to advocate for themselves in the adult service.
32:17
Speaker 2: And that is so difficult. I think we're really ill-equipped
32:22
Speaker 2: to do that. I mean, I had all along to
32:27
Speaker 2: advocate for my child, you know, throughout, and then to,
32:33
Speaker 2: you know, help them to advocate for themselves in the
32:37
Speaker 2: adult service was really difficult. I don't know the I've
32:43
Speaker 2: spoken to psychologists and, and there doesn't seem to be
32:48
Speaker 2: that even in the larger centers, there doesn't seem to be, uh,
32:52
Speaker 2: that sort of service or, or, or support. Um, so yeah,
32:59
Speaker 2: that's something that, that, that was difficult. And again, because
33:06
Speaker 2: letter writing was the thing that I did and also, um,
33:12
Speaker 2: Doctors write a lot of letters. I think we still
33:14
Speaker 2: write a lot of letters to each other. Dear doctor,
33:17
Speaker 2: and set out, you know, what the patient's diagnosis, prognosis,
33:26
Speaker 2: and this type of thing. And so we were really
33:33
Speaker 2: stumped in late teenage years. And I then... wrote actually
33:41
Speaker 2: just wrote uh to my son's surgeon and gastroenterologist saying
33:46
Speaker 2: you know i would like to advocate on his behalf
33:49
Speaker 2: these are uh and i've been given his permission to
33:52
Speaker 2: write and these are the things that we think um
33:56
Speaker 2: could you please look at and you know does does
34:00
Speaker 2: he does not deserve um you know at least some
34:05
Speaker 2: answers going forward and um And I think that was
34:12
Speaker 2: useful if you can do that in a fairly detached way,
34:21
Speaker 2: as much as you can ever be detached as a
34:23
Speaker 2: mother advocating for their child. And that did have a result.
34:29
Speaker 2: And at that point then, My son got a second opinion. Again,
34:46
Speaker 2: all the differences in health services. We're in Scotland, and
34:51
Speaker 2: to get a second opinion in England through the NHS,
34:55
Speaker 2: you've got to jump through a lot of hoops, and
34:58
Speaker 2: you've got to get your surgeon, your gastro, on board.
35:03
Speaker 2: But they were very willing to do that. And so he...
35:09
Speaker 2: had a second opinion, which was really useful in that
35:16
Speaker 2: the second opinion basically was, this is it. You're living,
35:29
Speaker 2: you've achieved amazing things. You're a black belt in judo.
35:34
Speaker 1: You are.
35:38
Speaker 3: Strong.
35:40
Speaker 2: Yet you are managing to actually achieve things in sport
35:51
Speaker 2: and despite this nausea, which no one's been able to
35:55
Speaker 2: get on top of, and carrying on with medication. So,
36:03
Speaker 2: you know, is this time to not necessarily draw a line,
36:06
Speaker 2: but just to think, right, I've got to deal with this.
36:11
Speaker 2: That's pretty harsh. It wasn't said or dealt with in
36:15
Speaker 2: a harsh way. It was really good because it was
36:19
Speaker 2: dealt with extremely well, extremely sensitively. But it just gave
36:27
Speaker 2: us all the sense that, right, this is it. Surgery
36:32
Speaker 2: is not the answer. Masses of medication is not the answer. So,
36:40
Speaker 2: As a family, we have to support our son in
36:43
Speaker 2: this and try and move on. Because at that point,
36:51
Speaker 2: he had missed a substantial amount of school and was
36:58
Speaker 2: needing to try and find a job. And that was difficult.
37:08
Speaker 2: So that was where we were at with that.
37:12
Speaker 1: Yeah, definitely. And I know we don't want to go
37:17
Speaker 1: into too much detail, but your son is an incredibly
37:22
Speaker 1: high achiever. You know, I know you talked about judo,
37:26
Speaker 1: but there's some other stuff that he does that he's incredibly,
37:30
Speaker 1: works incredibly hard at, obviously, and has achieved a great deal.
37:35
Speaker 2: Yeah.
37:36
Speaker 1: And that's... despite all of the issues we've talked about
37:40
Speaker 1: in the last sort of 35, 40 minutes, and really
37:44
Speaker 1: kind of showing, again, similar to what this podcast is about,
37:48
Speaker 1: really showing that, yes, he's been through all manner of things,
37:52
Speaker 1: and like you said, not a straightforward story in any sense,
37:56
Speaker 1: but he is still, well, has achieved and is still
38:01
Speaker 1: achieving great things.
38:03
Speaker 2: Yeah, I mean, I can speak about that because... He's
38:08
Speaker 2: incredibly proud, and rightly so, and so are we. He's
38:14
Speaker 2: a powerlifter. When you think of the number, he's had
38:22
Speaker 2: a number of laparotomies, a lot of surgery and intervention
38:28
Speaker 2: as a child, and he is competing at international level
38:37
Speaker 2: in powerlifting. He's really found his community there. It is
38:47
Speaker 2: very accepting. It's very supportive. You know, and again, it's going,
38:56
Speaker 2: I think I said to you, you know, it should
38:59
Speaker 2: hopefully give some hope to people, not that everybody's going
39:05
Speaker 2: to achieve international powerlifting status or be a black belting
39:12
Speaker 2: judo but you know again if we'd known with this
39:16
Speaker 2: sickly baby that we were trying to keep alive basically
39:23
Speaker 2: that he would go on to achieve this level of
39:34
Speaker 2: sporting prowess if you want to call it that you
39:38
Speaker 2: know that would have given us a lot of hope
39:40
Speaker 2: and I hope that that does show other families that
39:46
Speaker 2: there can be and there is light at the end
39:50
Speaker 2: of this sometimes very long.
39:52
Speaker 1: Tunnel definitely and power lifting as well people talk about
39:57
Speaker 1: arms and legs but it's stomach muscles as well massively
40:02
Speaker 1: stomach muscles as well and to have as many surgeries
40:05
Speaker 1: had obviously must have had an effect on his stomach
40:09
Speaker 1: muscles but to go through that and to still achieve
40:13
Speaker 1: so much I mean that's all power to him that
40:16
Speaker 1: is amazing.
40:18
Speaker 2: Yeah It is, and yeah, so proud of him and
40:26
Speaker 2: still dealing with Hirschsprung disease on a daily basis and
40:37
Speaker 2: the issues that sometimes come along with that. But irrespective,
40:43
Speaker 2: it hasn't stopped him.
40:46
Speaker 1: Absolutely, absolutely. And it's really, really fantastic to hear that
40:51
Speaker 1: he's doing so well. And just finally, I mean, I
40:56
Speaker 1: met you probably a couple of months ago now at
41:01
Speaker 1: the Hirschsprungs conference, and you were at the bare-named Butney store.
41:08
Speaker 1: I don't know if you wanted to chat a little
41:10
Speaker 1: bit about that.
41:13
Speaker 2: Oh, yeah, I'd love to speak about Batonnet because here
41:17
Speaker 2: he is. And he, this bear, is the brilliant, brilliant innovation,
41:32
Speaker 2: if you like, of my friend Benny Gao, who I
41:39
Speaker 2: met a couple of decades ago now. through our children
41:48
Speaker 2: being ill in the sick kids hospital and having stomas.
41:56
Speaker 2: And Jenny went on to do and set up a charity,
42:00
Speaker 2: a bear named Butany, who provide bears to every child
42:07
Speaker 2: in the UK who's having stoma surgery. And I've been
42:18
Speaker 2: a trustee and a volunteer of that charity for a
42:23
Speaker 2: while now. I'm not a trustee at the moment, but
42:26
Speaker 2: I still volunteer. And yeah, it's, again, just something that
42:36
Speaker 2: helps me as much as other people to be involved
42:41
Speaker 2: in something that, might help children and siblings to live
42:48
Speaker 2: life with a stoma and demonstrate that life with a
42:53
Speaker 2: stoma is life-saving and you can live a good life
42:59
Speaker 2: with a stoma. I certainly wish Botany Bear had been
43:03
Speaker 2: around when my son had a stoma and it would
43:07
Speaker 2: certainly have helped his siblings come to terms with what
43:11
Speaker 2: was happening. I think if you're able and you have
43:19
Speaker 2: the resource and the resilience to be involved in support
43:26
Speaker 2: for families with Hirschsprung disease or stomas, that's really good.
43:35
Speaker 2: And that helped me over the years to cope with
43:44
Speaker 2: what had happened to our family. But I think you've got, again,
43:53
Speaker 2: another fine line to tread because you've got to make
43:56
Speaker 2: sure that it doesn't become too much of a pressure
44:01
Speaker 2: on yourself. No one should ever feel that they should
44:06
Speaker 2: be doing this or should be supporting others. But for me,
44:13
Speaker 2: that was really, really useful and I'm so thankful to
44:20
Speaker 2: Botany Bear and the charity and particularly Jenny and the
44:28
Speaker 2: other people that I've met in the Hirschbrunn's community for
44:33
Speaker 2: helping in that way. Fantastic.
44:37
Speaker 1: Thank you so much for coming on it's been a
44:40
Speaker 1: pleasure to chat to you I'm really really appreciative of
44:46
Speaker 1: you coming on and sharing your son's story because I
44:50
Speaker 1: hope I very much expect that this will give a
44:55
Speaker 1: lot of hope out there to people who've been through
45:01
Speaker 1: a lot of issues and challenges when it comes to
45:03
Speaker 1: Hirschsprung so thank you so much and also for everything
45:07
Speaker 1: you do with Bungee Bear as well thank you so
45:09
Speaker 1: much for coming on and I wish you your son
45:13
Speaker 1: and your family the very very best for the future.
45:20
Speaker 2: Thank you very much Tom pleasure to be here.
45:25
Speaker 1: Thank you for listening and being part of this growing
45:28
Speaker 1: community if you have enjoyed the episode don't forget to
45:31
Speaker 1: subscribe leave a review and share it with someone who
45:34
Speaker 1: might not You can connect with us on social media
45:37
Speaker 1: via Instagram, Facebook and TikTok under the name Tom's Hirschsprungs Podcast.
45:43
Speaker 1: See you next week.