Latest / Tom's Hirschsprung's Podcast / Episode 113 - With Hannah Blewitt

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Episode 113 - With Hannah Blewitt · Tom's Hirschsprung's Podcast

0:02
Speaker 1: Hello, and welcome to episode one hundred and thirteen of
0:06
Speaker 1: Tom's Hirshprungs podcast. I am very glad to be joined
0:10
Speaker 1: this morning by Hannah. Hannah, welcome to the podcast.
0:14
Speaker 2: Hello, thank you for having me, well, thank you.
0:16
Speaker 1: So much for coming on. And we are going to
0:19
Speaker 1: talk about your son Oliver and his is diagnosis of
0:24
Speaker 1: Hirshbrong's disease only a matter of months ago. I guess, yeah, yeah,
0:30
Speaker 1: would you like to start? I guess from wherever you
0:34
Speaker 1: want to so.
0:37
Speaker 2: Well, probably at the beginning during my pregnancy with Oliver,
0:45
Speaker 2: it was not playing sailing at all. We had quite
0:48
Speaker 2: a few issues during the pregnancy. It was a high
0:51
Speaker 2: risk pregnancy, so we were already on edge anyway. And
0:56
Speaker 2: then he was born premature, slightly premier, thirty six weeks,
1:03
Speaker 2: was assessed by the neonatal team, was absolutely fine, passed
1:07
Speaker 2: all of his baby checks, everything. We were discharged forty
1:11
Speaker 2: eight hours after c section. Thought everything was fine. He
1:17
Speaker 2: passed maconium in the hospital, was everything was plain sailing,
1:23
Speaker 2: went home fast forward eight days. He well, he was distended,
1:31
Speaker 2: but we didn't realize because that's how he was from birth,
1:36
Speaker 2: just how his tummy was wasn't hard, was still quite soft,
1:41
Speaker 2: but was now looking back, it was distended. The community
1:46
Speaker 2: midwife that was coming out to review us, she was
1:50
Speaker 2: an arm because I said he was still only passing maconium,
1:54
Speaker 2: so his poo hadn't changed to the you know, greeny,
1:57
Speaker 2: yellowy sort of color. She wasn't worried because he was
2:02
Speaker 2: passing something. He was still tolerating his feeds. He hadn't
2:07
Speaker 2: been sick, there was no issues as such, but she
2:12
Speaker 2: thought it was best that she spoke to the hospital
2:15
Speaker 2: just to see what their thoughts were. So we ended
2:19
Speaker 2: up going back to the hospital where I had him.
2:23
Speaker 2: They assessed him, did an X ray on his abdomen
2:26
Speaker 2: and said they thought he'd got a twisted bowel, had
2:32
Speaker 2: to stop his milk feeds. They put canular in so
2:37
Speaker 2: he was on ivy fluids. I don't think what happened.
2:43
Speaker 1: Then it's a lots of processes.
2:46
Speaker 2: Yeah, it was a lot. Then over then another another
2:51
Speaker 2: doctor came in and had another look and she said
2:55
Speaker 2: she thought Oliver had a imperforated anus. So within ten
2:59
Speaker 2: minutes we've had two different medical opinions, two different things
3:04
Speaker 2: going on. And I said at that point, but he's
3:07
Speaker 2: obviously had in the hospital. When they're born, they have
3:09
Speaker 2: their head to toe checks. Surely if there was something
3:13
Speaker 2: like that, wouldn't that have been picked up in the hospital.
3:17
Speaker 2: And the way she explained it to me was because
3:19
Speaker 2: he was premature and everything, he was very small born.
3:23
Speaker 2: His bomb basically was tiny, so she said it is there,
3:28
Speaker 2: but in her medical opinion, it wasn't as formed as
3:31
Speaker 2: it was supposed to be. She said it could have
3:34
Speaker 2: just been missed unfortunately, so we were sort of under
3:40
Speaker 2: the impression he'd either got a twisted bowel or something
3:44
Speaker 2: wrong with his bomb wasn't formed basically. She then because
3:49
Speaker 2: this isn't it wasn't a specialist hospital. She then phoned
3:52
Speaker 2: through to Birmingham Children's Hospital and they accepted the referral
4:00
Speaker 2: such to see Aliva, So we ended up being no.
4:04
Speaker 2: Then they put an eng tube in sorry before this,
4:07
Speaker 2: and he was he started vomitting and it was green
4:09
Speaker 2: by all. This is while we were in the hospital.
4:14
Speaker 2: They then put a tube into drain anything that was
4:18
Speaker 2: coming out of his tummy because of this. Then they
4:21
Speaker 2: thought he's definitely got some kind of blockage. There's definitely
4:25
Speaker 2: something more serious going on. We ended up being blue
4:28
Speaker 2: lighted in an ambulance from the One Hospital to Birmingham
4:32
Speaker 2: Children's Hospital. When they were sending us into the ambulance,
4:38
Speaker 2: they said, the surgeons are there waiting for you, and
4:41
Speaker 2: I was like, what surgeons?
4:44
Speaker 1: Like?
4:45
Speaker 2: Obviously, my baby's eight days old. At this point I didn't.
4:48
Speaker 2: I don't think I fully understood when they said he's
4:52
Speaker 2: either got a twisted bowel or what sort of was
4:55
Speaker 2: going to have to happen. But hearing them say he
4:59
Speaker 2: may need so they're waiting for you automatically was just
5:02
Speaker 2: alarm bells were ringing. Me and Oliver's dad were just
5:07
Speaker 2: all over the place. We didn't He's very calm and
5:12
Speaker 2: very chilled about things, but even he was panicking, obviously
5:15
Speaker 2: as you do with your baby. So we ended up
5:18
Speaker 2: going there. Surgeons came and saw us. They assessed him
5:24
Speaker 2: and said he didn't have an imperforated in us, so
5:27
Speaker 2: that was one thing ticked off, which I took as
5:31
Speaker 2: a good sign. They reviewed his X ray as well
5:34
Speaker 2: and it said they said that he had enlarged bowl loops,
5:39
Speaker 2: which again at this point I didn't know what any
5:42
Speaker 2: of this means. They said his tummy was distended and
5:50
Speaker 2: they needed to do something called a rector wash out. Again,
5:53
Speaker 2: this is all just new to me. I have no
5:57
Speaker 2: idea really what they're talking about. We're doing some bloods
6:01
Speaker 2: on him as well, and that said, well when's this
6:04
Speaker 2: going to be done, and they said, well right now,
6:07
Speaker 2: And then they just went and got this equipment like
6:09
Speaker 2: the cathetera sailine, everything you use to do a wash out,
6:14
Speaker 2: and just did it. I'm my baby there and then
6:17
Speaker 2: we were a bit in shock. I don't think we
6:21
Speaker 2: I suppose you don't know what we were walking into.
6:23
Speaker 2: We didn't. I think we just thought maybe he was
6:26
Speaker 2: a bit under the weather, or because he was premature,
6:29
Speaker 2: you know, everything wasn't as formed as a term baby.
6:33
Speaker 2: We were just going to go have a few observations
6:36
Speaker 2: and we'd go home. We didn't think within hours we
6:40
Speaker 2: were going to be blue lighted to a specialist hospital
6:43
Speaker 2: and have treatment started on him. They didn't mention Hirshbrung's
6:48
Speaker 2: disease at this point. They just said, let's just see
6:51
Speaker 2: what happens, because typically babies with Hirshbrungs disease can't poo
6:58
Speaker 2: at all, but obviously Oliver was pooing somewhat we were
7:04
Speaker 2: in them for a couple of days. He was still
7:06
Speaker 2: nil by no carry on carrying on with the washouts,
7:11
Speaker 2: and then the consultant came around and said, I think
7:13
Speaker 2: we should do a biopsy just to rule out Hirshbrung's disease.
7:19
Speaker 2: Went through obviously what Hirshbrung's disease was. He said he
7:25
Speaker 2: didn't see oliver as the typical symptoms of a Hirshbrung's baby,
7:31
Speaker 2: so he wasn't convinced it was it was going to
7:35
Speaker 2: that's what it was going to be. But he said,
7:37
Speaker 2: do you know you're here, Let's just roll everything out.
7:41
Speaker 2: He'd stopped being sick as well at this point, so
7:45
Speaker 2: he was improving. All these observations, everything were fine. They
7:50
Speaker 2: then did the biopsy, and a couple of hours after
7:54
Speaker 2: the biopsy, he started pooing on his own. So the
7:58
Speaker 2: consultant again said the biopsy wouldn't have met allowed him
8:04
Speaker 2: to pooh on his own. That's not what the intention
8:07
Speaker 2: of the biopsies to take the biopsy, not to remove
8:11
Speaker 2: any blockage or anything like that. So the nursing staff,
8:15
Speaker 2: a consultant, we were all like, this is great, you know,
8:18
Speaker 2: like he's obviously had some kind of a blockis worked
8:21
Speaker 2: its way out. We're on the way home. We're in again,
8:26
Speaker 2: still for a few days, because he said, you know,
8:28
Speaker 2: I don't want to just send you home just in case.
8:32
Speaker 2: But he was tolerating his milk. Then at this point
8:34
Speaker 2: there was no sick there was he was poohing. Everything
8:37
Speaker 2: was was great. So the consultant said, go home, we'll
8:42
Speaker 2: call you with the biopsy results. Well, I'm not expecting anything, really,
8:47
Speaker 2: So we went home. A week had gone by. We
8:50
Speaker 2: were great, you know, no issues, he was gaining weight,
8:53
Speaker 2: he was drinking his milk. Everything was fine. And then
8:56
Speaker 2: I get a call from the hospital saying, well, it
8:59
Speaker 2: wasn't the consultant. It was a different doctor saying, we've
9:04
Speaker 2: had some of the biopsy results back, not all of them,
9:08
Speaker 2: just some of them, but your consultant would like to
9:11
Speaker 2: discuss them in person with you. And as soon as
9:14
Speaker 2: she said that, my alarm bell started ringing again, and
9:18
Speaker 2: I just thought, if it was nothing, they'd just phone
9:20
Speaker 2: me and said or send me a letter and say Bulkley.
9:24
Speaker 2: So straight away I know there was something. But when
9:27
Speaker 2: I said is it? I said on the phone, is
9:29
Speaker 2: it Hirshbrong's disease, and she said, oh, we haven't had
9:32
Speaker 2: the full results back yet. Can you just make your
9:36
Speaker 2: way up to the hospital. So when you're up going
9:40
Speaker 2: to the hospital, our consultant came in. This was it
9:44
Speaker 2: was on the night he'd came in from home especially
9:47
Speaker 2: to come and talk to us. And I said, just
9:53
Speaker 2: tell me, I said, just tell me what's going on.
9:56
Speaker 2: And he said, yeah, Oliver has got Hirshbrong's disease. He said,
10:00
Speaker 2: I didn't want to get the other doctor to tell
10:02
Speaker 2: you over the phone. He said, I don't think it
10:04
Speaker 2: was the right thing to discuss this kind of thing
10:06
Speaker 2: over the phone, and he wanted to tell us in person,
10:09
Speaker 2: which I thought was really really nice that, you know,
10:12
Speaker 2: he wanted to sit and let us ask our questions
10:16
Speaker 2: and everything. So again we were admitted again into the
10:21
Speaker 2: hospital on the surgical neonatal ward. They we then had
10:29
Speaker 2: to have our training for washouts because we hadn't us
10:32
Speaker 2: as parents hadn't had the training before because they were
10:34
Speaker 2: all under the impression we weren't going to need it
10:38
Speaker 2: in the long term. So they gave us a training
10:42
Speaker 2: luck and within two days we'd been fully trained on
10:47
Speaker 2: doing washouts at home, irrigations, how to do a flat
10:52
Speaker 2: is tube, what to do if he becomes distended, turned
10:58
Speaker 2: into very medical call, very very fuickly. We Once we'd
11:06
Speaker 2: been signed off from the training, we then went home
11:10
Speaker 2: awaiting surgery date. Because Oliver was small as well and premature,
11:19
Speaker 2: they said they wanted to wait until he was a
11:23
Speaker 2: little bit bigger to do his surgery. So yeah, we
11:36
Speaker 2: basically went home with all this medical equipment, had to
11:40
Speaker 2: do washouts twice a day, and was told we'd be
11:43
Speaker 2: contacted by the Color Rector team, and then we were
11:48
Speaker 2: just waiting on a surgery date. So this was October time,
11:55
Speaker 2: so he was about a month old. At this point,
11:59
Speaker 2: we'd spent more time in the hospital than we had
12:02
Speaker 2: at home. The Color Rectal team then phoned us a
12:08
Speaker 2: couple of days after we were officially discharged just to say,
12:12
Speaker 2: you know, like we're your first port of call. We're
12:14
Speaker 2: here on hand if you have any questions, if you
12:17
Speaker 2: need any support, and then they were going to check
12:20
Speaker 2: in with us once a week just to see how
12:22
Speaker 2: we were getting on doing his washouts, how Oliver was doing.
12:25
Speaker 2: They were updating us on when he was going to
12:28
Speaker 2: have his surgery. We then got a phone call I
12:32
Speaker 2: think it was the end of October, just a routine
12:36
Speaker 2: to check in from the coll rectal team saying that
12:38
Speaker 2: we've got a surgery date, which was the first of December,
12:43
Speaker 2: so we knew it was coming, but for them to
12:45
Speaker 2: actually say, okay, your baby's got to have a general anesthetic.
12:49
Speaker 2: You know, it's major surgery. He could be in theater
12:52
Speaker 2: for eight hours. It was a lot to process, but
12:57
Speaker 2: obviously we knew it needed it needed to be done.
13:02
Speaker 2: So then we were just on the countdown basically for surgery.
13:05
Speaker 2: Went for like his pre up and everything. Then nothing
13:11
Speaker 2: really happened. Obviously, we carried on with his washouts. He
13:14
Speaker 2: was fine, got to surgery date, so first of December.
13:22
Speaker 2: He was in theater for about six and a half
13:25
Speaker 2: hours and it was the longest, longest day ever. It
13:31
Speaker 2: was horrible just waiting around. I mean, the nurse that
13:34
Speaker 2: was looking after me and Kyle, Oliver's dad, he was lovely,
13:37
Speaker 2: just kept coming in saying, go for a walk, do
13:40
Speaker 2: you know, do you want to tea and coffee? Just
13:41
Speaker 2: try and do things to keep us occupied, which obviously
13:47
Speaker 2: we did, but you still just sat really waiting. Then
13:52
Speaker 2: obviously he came round from the anesthetic. We went down
13:56
Speaker 2: to recovery to see him. As soon as he saw us,
14:01
Speaker 2: he started smiling. I mean, he's only three months at
14:03
Speaker 2: literally just three months at this point and he's being
14:06
Speaker 2: in smile and the aneasity said, he hasn't smiled. He
14:09
Speaker 2: hasn't even he's just been really straight faced. And then
14:12
Speaker 2: he saw me and his dad's and he was just
14:14
Speaker 2: being in smile. So that was nice, in like a
14:17
Speaker 2: sad awful situation, that was nice to see. Then went
14:23
Speaker 2: onto the ward. They explained to us before surgery that
14:28
Speaker 2: you know, he might need like a central line, and
14:30
Speaker 2: might not be able to be fed, and might be
14:33
Speaker 2: on a morphine drip and basically worst case scenarios. Oliver
14:38
Speaker 2: had none of that. He was he was recovering really well,
14:42
Speaker 2: so he was We were able to give him a
14:44
Speaker 2: bottle straight away, tolerated his meal, he had pain relief,
14:50
Speaker 2: but he wasn't on a drip, didn't have to have
14:54
Speaker 2: a feeding tube anything. So the nurse on the ward
14:57
Speaker 2: had set everything up and needy and we were all
15:01
Speaker 2: quite shocked at how well he was doing. We were
15:05
Speaker 2: in the hospital then for four days post surgery, and
15:08
Speaker 2: because he'd recovered that well, they said we could go home,
15:12
Speaker 2: whereas we were supposed to be in for around a
15:14
Speaker 2: week ten days. So everything was great at this point.
15:19
Speaker 2: He you know, we thought, yeah, sad his surgery were
15:23
Speaker 2: on the op basically.
15:26
Speaker 1: Go home.
15:28
Speaker 2: Then we had to go back three weeks later, which
15:31
Speaker 2: was Christmas Eve, for them to just review how he
15:34
Speaker 2: was getting on check the join they'd made during his surgery.
15:39
Speaker 2: They when they assessed him, the join they felt was
15:43
Speaker 2: too tight. So we then acdt to try and do dilations,
15:48
Speaker 2: which again wasn't really prepared for. It wasn't a nice
15:54
Speaker 2: experience really to see, but again we know it needed doing.
15:59
Speaker 2: When they were doing the DilOS, they got to I
16:01
Speaker 2: think it was So's twelve I think it was, and
16:04
Speaker 2: they liked to go up to fifteen they said, and
16:06
Speaker 2: they couldn't get up anymore than the twelve. So we
16:16
Speaker 2: then had to go back the following week, which was
16:18
Speaker 2: New Year's Eve for them to honor for them to
16:24
Speaker 2: try and do it again. So they tried again and
16:28
Speaker 2: said that it felt better, which was obviously positive, but
16:34
Speaker 2: they still weren't overly happy so wanted to review him
16:38
Speaker 2: again two weeks later. So he was poohing and everything
16:43
Speaker 2: on his own at this point, but he was very
16:46
Speaker 2: seemed like he was very in pain with it. But
16:49
Speaker 2: they said, obviously he hasn't been poohing on his own.
16:52
Speaker 2: It almost is like burning burning him, and he'd get
16:55
Speaker 2: used to it. Then we went for another review and
17:01
Speaker 2: they said they thought everything was fine, and you know,
17:04
Speaker 2: we'd just be seen every couple of weeks or so,
17:07
Speaker 2: we'll have phone calls just to see how he was
17:08
Speaker 2: getting on. So we're about middle of January. At this point,
17:13
Speaker 2: Oliver stops pooing, starts being sick, becomes distended again. He
17:19
Speaker 2: was very nasally and like congested. So I thought he's
17:22
Speaker 2: just got cold. He's a bit under the weather. Comparing
17:26
Speaker 2: him to my older two children who haven't got Hirshbrong's disease.
17:30
Speaker 2: If it was them, i'd have just said they're under
17:33
Speaker 2: the weather. You know, they've got a bit of a cold,
17:35
Speaker 2: w okay in a few days. But because of his condition,
17:40
Speaker 2: I thought, no, he's something he's wrong. So we went
17:44
Speaker 2: straight to Ana at the children's hospital. Was reviewed again
17:52
Speaker 2: by the surgical team, said he'd got hirshbrongs and to colitis,
17:59
Speaker 2: which overseason infection, so he again had to stup his
18:05
Speaker 2: milk feeds. We were admitted ivy fluids, antibiotics, back to
18:13
Speaker 2: doing washouts again. We almost felt like we'd gone seven
18:18
Speaker 2: steps forward with his surgery and his recovery to then
18:21
Speaker 2: go back again and back to square one almost. So
18:26
Speaker 2: we were in for a couple of days. Then we
18:31
Speaker 2: had to switch. Well, the dietitian came and saw us
18:34
Speaker 2: and switched his formula to Alato's free formula because they
18:38
Speaker 2: said it's easier for him to digest. He seemed to
18:41
Speaker 2: be tolerating that well, so they let us go home
18:46
Speaker 2: with oral antibiotics but still doing washouts. We then, about
18:53
Speaker 2: a week later, had a review with his surgeon and
18:59
Speaker 2: the color rectors team. They were happy with how he
19:04
Speaker 2: was recovering, let's say, from his ender colitis. What they
19:12
Speaker 2: thought that he could do with botox injections. They said,
19:17
Speaker 2: they think his muscles in his bottom are basically in spasm,
19:24
Speaker 2: which is why he stopped pooing. They think he got
19:27
Speaker 2: because he was poorly as well, that just sort of
19:29
Speaker 2: tipped him over the edge to get into colitis. So
19:32
Speaker 2: again this was a whole other scenario now that we've
19:35
Speaker 2: been told about, and I said, well, how does this work?
19:37
Speaker 2: And then they said it's another general anesthetic, which again
19:41
Speaker 2: is not as major as he's pulled through surgery, but
19:44
Speaker 2: it's still another procedure that he's got to have done.
19:50
Speaker 2: So we've been put on the waiting list for that.
19:52
Speaker 2: So we're waiting for that currently, but we're still doing
19:56
Speaker 2: washouts and we're having to do a latest tube to
20:00
Speaker 2: relieve the wind in his in his belly. Got to
20:07
Speaker 2: carry on with that basically until he has his next procedure.
20:11
Speaker 2: So with yeah, we sort of went well with recovery
20:17
Speaker 2: and now we're I feel like we're back to square,
20:19
Speaker 2: back to square one again.
20:20
Speaker 1: What sounds so frustrating it is it sounds like he
20:24
Speaker 1: was making some really really good progress, really good and
20:30
Speaker 1: then entrocolitis hits, which, yeah, we know that, we know
20:36
Speaker 1: that entrachtis is. You do get very susceptible to that
20:41
Speaker 1: if you do have hirshprungs. It is one of the things.
20:44
Speaker 1: Were you told to look out for it when he
20:47
Speaker 1: was diagnosed with hirshprngs.
20:49
Speaker 2: We were, but not sort of as alarming as I've
20:54
Speaker 2: realized how how it can be so they did say, obviously,
20:59
Speaker 2: you know, keep an eye out if he gets descended,
21:02
Speaker 2: it starts vomitting, anything like that. But then when we
21:06
Speaker 2: were back in the hospital when he had it, I
21:08
Speaker 2: then realized how severe it can get if it's not
21:11
Speaker 2: treated quickly.
21:13
Speaker 1: Yeah. Yeah, And I guess the good thing as well
21:16
Speaker 1: is you did. You did catch it fairly quickly. You
21:21
Speaker 1: sort of I thought, actually, something's not right by right,
21:26
Speaker 1: like like you said, if it had been any of
21:28
Speaker 1: your older children or anybody without hirsprungs, you just said, oh, well,
21:31
Speaker 1: they're just a bit sick, you know. But unfortunately Hirsprung's,
21:36
Speaker 1: you can't be too careful. I guess.
21:37
Speaker 2: No, it's a whole different orgame.
21:40
Speaker 1: It certainly is. It certainly is. And it's interesting to say,
21:45
Speaker 1: just to come back to the start, that he did
21:49
Speaker 1: pass maconium and so, but then still presented a lot
21:55
Speaker 1: of the typical symptoms, like he liked, the vomiting, the
21:59
Speaker 1: green bile on all of that stuff. So it's so
22:02
Speaker 1: difficult because it's not it's not the same for everyone,
22:06
Speaker 1: is it. So this is the really frustrating thing, is.
22:08
Speaker 2: It's really really frustrating. And again, the real like with this,
22:13
Speaker 2: it's not really something that anybody's heard of. I'd never
22:16
Speaker 2: heard of it. And when they said how rare like
22:19
Speaker 2: harsh brongs is, obviously you start googling things, don't you,
22:22
Speaker 2: And then you know, you see that there is other
22:24
Speaker 2: people that have had it, and you know, just like
22:27
Speaker 2: groups on Facebook and things where other families. But at
22:31
Speaker 2: the time you just think, what have we like, what
22:33
Speaker 2: have we done? What was my baby doing to be
22:35
Speaker 2: diagnosed with such a rare condition and there's no reason
22:40
Speaker 2: for it.
22:42
Speaker 1: No, it's it's such a strange one, isn't it Because
22:46
Speaker 1: it is rare? Yes, but if the numbers people you
22:52
Speaker 1: throw around one in five thousand, Yeah, that's the general
22:56
Speaker 1: sort of accepted term. Whether it's a little bit less
22:59
Speaker 1: than that, whether it's than that, who, but the general
23:02
Speaker 1: accepted term. But that's sort of one in every small town,
23:07
Speaker 1: I guess. So it is rare, but it's still there's
23:14
Speaker 1: still quite a lot of people who just think, you know,
23:16
Speaker 1: UK alone, there's going to be an awful lot of people,
23:19
Speaker 1: especially was it one hundred and fifty diagnosed each year
23:23
Speaker 1: or something around around that, so that there are still
23:27
Speaker 1: a lot of people with it. Even though when it's
23:31
Speaker 1: mentioned to you, especially if you've got the like me
23:36
Speaker 1: and like yourself, no family history of her no it
23:39
Speaker 1: then it's yeah, I guess it can hit you a
23:43
Speaker 1: little bit like a truck.
23:45
Speaker 2: Yeah, it does, it really does. I mean, I know,
23:48
Speaker 2: obviously Olive was only he's five months old now, but
23:51
Speaker 2: he he has no pluly really of any of this
23:57
Speaker 2: that's gone on so far. I mean, obviously he knows
23:59
Speaker 2: well obviously he's been through it with the surgeries and
24:02
Speaker 2: you know, it's doing the washouts and things. But he's
24:06
Speaker 2: it's us that's having to deal with it almost. It's
24:10
Speaker 2: he he's none the wiser, really.
24:13
Speaker 1: No, But that's it.
24:15
Speaker 2: That's which is a good thing. Yeah, which is a
24:18
Speaker 2: good thing. I think if it was a older child
24:21
Speaker 2: like my other two daughters, so she's five and three,
24:24
Speaker 2: the obviously would they're a lot more knowing, I know,
24:28
Speaker 2: everything that's going on. I think it would be a
24:30
Speaker 2: lot more difficult if it was like one of those
24:33
Speaker 2: them being diagnosed now rather than Oliver as a as
24:37
Speaker 2: a baby.
24:38
Speaker 1: Yeah. Yeah, and I guess that's one of the plus points.
24:43
Speaker 1: If there is spoils.
24:46
Speaker 2: Anything you can as a positive really right, absolutely, But
24:51
Speaker 2: I guess that's that's one of the plus points.
24:53
Speaker 1: About when you know, we are diagnosed with hers bruns
24:57
Speaker 1: more often than not. And again, it's not not the
25:00
Speaker 1: same in everyone, because I know there are people who
25:02
Speaker 1: have been diagnosed in their twenties with hirsh, so it's
25:05
Speaker 1: not the same for everyone, but a lot of us
25:08
Speaker 1: are diagnosed within the first forty eight hours. And I
25:11
Speaker 1: guess that's another point that I was going to come
25:13
Speaker 1: to that. I guess that was quite late to be diagnosed.
25:18
Speaker 2: Yeah, well, yeah, we went in. By the time we
25:22
Speaker 2: had the biopsy results, he was coming up to a
25:24
Speaker 2: month old when he was officially diagnosed.
25:28
Speaker 1: That's I mean, take sort of your average is forty
25:32
Speaker 1: eight hours you will take. So that's that's quite that's
25:37
Speaker 1: quite late, I guess to be diagnosed. But was it
25:41
Speaker 1: I know, obviously he got the phone call and when
25:44
Speaker 1: they say coming to the hospital, they're not just coming
25:46
Speaker 1: in for a nice chat, are they?
25:48
Speaker 2: Noah?
25:50
Speaker 1: But was it a relief to go, Okay, well he
25:53
Speaker 1: hasn't got a twisted bow, he hasn't got any other
25:56
Speaker 1: because he's got hirshbrungs. Was that a relief? Was that
26:00
Speaker 1: kind of Oh? No? I don't know what the future
26:02
Speaker 1: holes now.
26:05
Speaker 2: I think it was a relief in a way because
26:09
Speaker 2: I knew in my gut something wasn't right. This is
26:13
Speaker 2: going to sound probably really strange, but from the minute
26:16
Speaker 2: I found out I was pregnant with Oliver, I felt
26:19
Speaker 2: something wasn't right with him. Obviously I didn't know it
26:23
Speaker 2: was it was going to be anything like this, And
26:25
Speaker 2: obviously Hirschbrongs is present in the first trimester of pregnancy.
26:31
Speaker 2: So but obviously when he was born and they all
26:34
Speaker 2: said everything's fine, I thought, I know, I'm not going crazy.
26:38
Speaker 2: I know there is something not right. But so I
26:41
Speaker 2: think to get some kind of a diagnosis was a
26:46
Speaker 2: relief in a way that I knew to trust my
26:49
Speaker 2: gut and that my gut was right. But I think
26:52
Speaker 2: because we've been sent home the hospital was saying, oh, no,
26:56
Speaker 2: we don't think it is Hirshbrong's. You know, he's recovering
26:59
Speaker 2: really well, it then felt like we'd been hit bar
27:02
Speaker 2: truck again. Yeah, And so it was both for relief
27:08
Speaker 2: and not if that makes any sense, that does make
27:11
Speaker 2: absolute sense.
27:12
Speaker 1: Yes, I will always always go with mother's instinct. Yeah,
27:19
Speaker 1: I think that's incredibly valuable. Not only from my own experience,
27:24
Speaker 1: but also from a lot of people I've spoken to
27:27
Speaker 1: who've just said, I don't know what the problem is,
27:30
Speaker 1: but I know there is one, and I think that's
27:34
Speaker 1: more than enough grounds to investigate. Now, you'd said, having
27:39
Speaker 1: never heard of Hirshbrong's, I think it's hirshbrongs. Within the
27:42
Speaker 1: first month, then there might be you know, that might
27:44
Speaker 1: be a bit odd, but but I'll always I'll always
27:51
Speaker 1: back mother's instinct. Yeah, always in.
27:53
Speaker 2: A hospital when we went in when he was diagnosed
27:56
Speaker 2: with enter colitis, the doctor that reviewed him then, so
28:00
Speaker 2: I said, I can just tell there's something different with
28:03
Speaker 2: my baby. And he said, a mother's instinct is never wrong.
28:07
Speaker 1: He said.
28:07
Speaker 2: Obviously, we can't make a clinical diagnosi if diagnosis, or
28:12
Speaker 2: you know, do medical treatment based off an opinion, he said,
28:17
Speaker 2: but we always will take it into consideration.
28:21
Speaker 1: That's really good to hear. That's really really good, because
28:23
Speaker 1: I know there have been a lot of people who've
28:25
Speaker 1: had to fight and advocate and say I know something's wrong,
28:30
Speaker 1: and the doctors or nurses or whoever just say, oh, no,
28:32
Speaker 1: everything's fine, or the results that we've done have come
28:35
Speaker 1: back it's fine. But that's I think hopefully now hospitals
28:43
Speaker 1: are starting to again, like you said, not take it
28:47
Speaker 1: as a full blown medical diagnosis.
28:50
Speaker 2: But realize that you're with your baby all the time,
28:54
Speaker 2: you know them better than anybody else.
28:57
Speaker 1: Yeah, you know when somethings are off. You can't put
29:01
Speaker 1: your finger on it, but you know, you know when
29:03
Speaker 1: something's off. But that's that's really really good to hear.
29:06
Speaker 2: Yeah. Look, Yeah, Birmingham Children's Hospital. From the minute we
29:12
Speaker 2: went in there, I said, I felt all the staff,
29:15
Speaker 2: they've been honestly been amazing. Really we've been really really lucky,
29:19
Speaker 2: really lucky.
29:20
Speaker 1: Yeah. No, that's absolutely brilliant, and especially with being we said,
29:26
Speaker 1: a slightly sort of later diagnosis. See the early diagnosed
29:31
Speaker 1: the better, but and sort of later diagnosis has really
29:36
Speaker 1: really good to hear that they've taken mother's instinctive into
29:40
Speaker 1: consideration of something i'd always always have. You mentioned as well, Yeah,
29:47
Speaker 1: that he Oliver is on the waiting list for botox
29:52
Speaker 1: in gest What would though for anybody who hasn't kind
29:56
Speaker 1: of come across that before, because some people with hersh
30:00
Speaker 1: have it, some people don't. Just depends on multitude of things,
30:05
Speaker 1: But what would that help him with.
30:08
Speaker 2: So the way they the hospital have explained it is
30:12
Speaker 2: basically it relaxes the muscle to allow him to puh
30:16
Speaker 2: more freely. At the minute, they says as if he's
30:20
Speaker 2: in spasm, so he's struggling to fully go to the
30:26
Speaker 2: toilet in a way, so they said this hopefully will
30:30
Speaker 2: relax everything, can allow him to not be as sort
30:33
Speaker 2: of tense and just.
30:36
Speaker 1: More for it. Yeah, that's brilliant because I think there
30:40
Speaker 1: are so there are quite a few babies with hirsprungs
30:47
Speaker 1: who or young children with hirsprungs who do have botox injections.
30:52
Speaker 1: So I think again, when you when people mention the
30:55
Speaker 1: word bowtops, that can have different connotations that were you
31:00
Speaker 1: sort of aware did they explain that to you when
31:03
Speaker 1: they said it to you, or did they just say
31:05
Speaker 1: the word botox and then automaticvely thing like plastic surgery.
31:09
Speaker 2: They I think they I wear my expressions a lot
31:14
Speaker 2: on my face, so I think when they said botox
31:16
Speaker 2: and I kind of looked like, what are you going
31:19
Speaker 2: on about? They then I think gauge my face and
31:23
Speaker 2: explain explained it. Because yeah, as soon as they said that,
31:28
Speaker 2: I was like, what botox? What you're talking about but yeah,
31:35
Speaker 2: they did obviously explain it straight away.
31:39
Speaker 1: Fantastic. No, that's good as well, that you know, because
31:43
Speaker 1: you can hear the word botox and you think you
31:46
Speaker 1: know something completely different. So it's it's good. And I
31:50
Speaker 1: guess as well, with it being such a complex condition,
31:57
Speaker 1: the need for explanation along the way, I think it's
32:02
Speaker 1: really important. I know you said, and I know they said,
32:05
Speaker 1: you know, don't don't google it, And I think all
32:10
Speaker 1: hospitals say, well, diagnose with herthbrongs, but don't google it.
32:13
Speaker 1: But I think everyone does.
32:15
Speaker 2: Everyone does. I mean, they gave me leaflets with you know,
32:19
Speaker 2: all information about everything like HIRSHWRNG disease, reck to wash outs,
32:25
Speaker 2: enter colitis. They gave me every leaflet going. But even
32:29
Speaker 2: I still went on and googled it.
32:32
Speaker 1: Yeah.
32:33
Speaker 2: Yeah, I mean I think that's just a natural reaction.
32:37
Speaker 1: I think it is as well, because I guess at
32:39
Speaker 1: the end of the day, what you want is the knowledge.
32:44
Speaker 1: Knowledge is power. Essentially, what you want is to be
32:49
Speaker 1: able to know as much as you can know. I mean,
32:52
Speaker 1: obviously they say it so that you don't come across,
32:55
Speaker 1: you know, wrong information or horror stories or any of
33:00
Speaker 1: that kind of stuff, But I don't see I don't
33:04
Speaker 1: know where they say it, but I don't see anything
33:06
Speaker 1: wrong with knowing more because at the end of the day,
33:09
Speaker 1: you know, you want to do everything you can to
33:11
Speaker 1: help your baby. Yeah, of course, and knowing as much
33:16
Speaker 1: as you know as you can know, I guess is
33:18
Speaker 1: the best way forward.
33:20
Speaker 2: Yeah, I agree, definitely.
33:23
Speaker 1: But it's yeah, so I think that's I know it's
33:27
Speaker 1: difficult not to sit there and google and find everything
33:30
Speaker 1: out about it, but it's it's Yeah, I think knowing
33:34
Speaker 1: more about the condition is definitely definitely a good thing.
33:41
Speaker 1: And I think I know you mentioned the entricolitis episode
33:47
Speaker 1: in January, which actually only a month ago. Yeah, well,
33:51
Speaker 1: there's everything's moving so fast, so fast, But in terms
33:57
Speaker 1: of how long did that take to kind of get
34:01
Speaker 1: out of his system.
34:04
Speaker 2: Who're in the hospital for two or three days, and
34:08
Speaker 2: then we carried on with the antibiotics for another week
34:13
Speaker 2: after that, so probably we're on about day ten by now.
34:18
Speaker 2: Then we were reviewed at the hospital probably at about
34:23
Speaker 2: two weeks or in all for them to review him
34:26
Speaker 2: again and say, okay, he seems okay. But obviously we're
34:31
Speaker 2: still doing washouts now. So it's as if the infection
34:35
Speaker 2: has gone, but we're still treating it in a way.
34:42
Speaker 1: Yeah, it's it's I guess it's one of those where
34:46
Speaker 1: as soon as you have it and you then you
34:48
Speaker 1: don't necessarily forget it. You just kind of think, right,
34:53
Speaker 1: we're going to do everything we can to make sure
34:55
Speaker 1: that they come back. So if we move onto kind
35:01
Speaker 1: of the future, yeah, and I guess it must seem
35:05
Speaker 1: you know, five months ago must seem an absolute lifetime ago.
35:09
Speaker 2: It does. Yeah, it does in a way.
35:12
Speaker 1: That all the things that you have to learn and
35:14
Speaker 1: I know, as I say this a lot, but all
35:16
Speaker 1: the things you have to learn within such a short
35:18
Speaker 1: space of time is is unbelievable. But like we were
35:21
Speaker 1: chatting before we started recording, you don't have a choice.
35:25
Speaker 2: I guess you don't have to just do what whatever
35:28
Speaker 2: you have to do to help your baby feel better.
35:31
Speaker 2: And you whether you want to do it or not,
35:36
Speaker 2: that all goes out the window because you have you
35:38
Speaker 2: have to do it as a parent.
35:40
Speaker 1: Yeah, absolutely absolutely, And and and onto the future as well. Yeah,
35:48
Speaker 1: what is sort of the future, both kind of medically
35:51
Speaker 1: as far as you know, for Oliver and sort of
35:54
Speaker 1: non medically. What do you what do you hope for
35:56
Speaker 1: the future for him.
36:03
Speaker 2: I mean, well, next month obviously we're coming up to
36:06
Speaker 2: weaning him, like starting solids, which I am really anxious about. Obviously,
36:13
Speaker 2: with my girls it was just yeah, you know, they
36:17
Speaker 2: they were at the age will give them whatever, you know,
36:20
Speaker 2: no issues. Whereas we're having to think of what, what's
36:24
Speaker 2: going to potentially affect his stomach, what's easier to digest,
36:29
Speaker 2: blah blah blah. So that's already something like in the
36:32
Speaker 2: short term, but then it's wather is he going to
36:35
Speaker 2: need like a high fiber diet. Is he going to
36:37
Speaker 2: need laxatives? Is he It's a whole different ballgame of
36:44
Speaker 2: thinking of And that's just the short term, and then
36:46
Speaker 2: we've got to hit party training stage and him going
36:50
Speaker 2: to school and medically. I think it's a long road ahead. Obviously.
36:58
Speaker 2: It's just every like you say, every child baby with
37:02
Speaker 2: hushbrungs is completely different. There's no path as such to say, yes,
37:08
Speaker 2: this is what's going to happen. It's kind of just
37:11
Speaker 2: how your baby reacts and copes with it. I hope
37:18
Speaker 2: he can lead to sort of us normal life as such,
37:24
Speaker 2: like book, I don't.
37:27
Speaker 1: Know, Yeah, I don't know. I mean a lot a
37:30
Speaker 1: lot of us do A lot of us. You know,
37:32
Speaker 1: a lot of people, a lot of adults I've spoken to.
37:34
Speaker 1: And again I know you say, and you're absolutely right
37:37
Speaker 1: when you say everybody's different. Yeah, but there are a
37:41
Speaker 1: lot of adults I've spoken to who and myself included,
37:46
Speaker 1: where you would look at us or walk past us
37:49
Speaker 1: and you wouldn't have a clue. We wouldn't have a
37:52
Speaker 1: clue that we have thirty million scars, or that we
37:57
Speaker 1: have harshbrungs, or that we have had any surgery, you know, whatsoever.
38:03
Speaker 1: So I mean that is reassuring, It is it is
38:08
Speaker 1: very much possible, you know. And and like I've spoken
38:13
Speaker 1: to many people who have not just gone on to
38:17
Speaker 1: lead sort of normal I know that word normal lives,
38:24
Speaker 1: but have also achieved, you know, amazing things as well.
38:28
Speaker 1: So I think it's you know, it's it's one of
38:31
Speaker 1: those conditions where everybody is different, but there are people
38:35
Speaker 1: out there with it who have done amazing things. So
38:39
Speaker 1: I really hope the very best for you and Oliver
38:45
Speaker 1: both sort of both in the short term obviously with
38:48
Speaker 1: hospital appointments and whatnot, but yeah, and definitely in the
38:53
Speaker 1: long term as well so, thank you so so much
38:56
Speaker 1: for coming on, thank you for having me