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Episode 94 - With Sandeep Kumar · 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. Hello, and welcome to episode ninety four of
0:48
Speaker 1: Tom's Hirshbrungs Podcast. I am delighted to be joined by
0:52
Speaker 1: Sandy Kumar and we are going to discuss all about
0:57
Speaker 1: hirshbruns this evening. And welcome to the podcast. Sandy.
1:00
Speaker 2: First of all, thank you, thank you for the warm welcome.
1:03
Speaker 1: Tom, No problem, no problem, No are you coming all
1:07
Speaker 1: the way from India. I'm not anybody from India on
1:10
Speaker 1: the podcast yet, So it's another country, another country or
1:13
Speaker 1: tikto off the list? Uh? If he we're here to
1:17
Speaker 1: chats about your your child who has has hirsh proms,
1:22
Speaker 1: I guess it's kind of a up to you. Really,
1:23
Speaker 1: whereabouts you'd like to start if you want to staff
1:26
Speaker 1: from the beginning or whereabouts?
1:29
Speaker 2: Yeah, So I will start with the vigning actually from
1:34
Speaker 2: the like after the first day of delivery show some
1:37
Speaker 2: of the sciences we have seen. So he was not
1:40
Speaker 2: able to pass the tool as a normal child. Uh, yeah,
1:44
Speaker 2: it does. So you were like not that was not
1:49
Speaker 2: a big concern for us. So we had connected with
1:53
Speaker 2: the doctor and he told us that just put it,
1:57
Speaker 2: put him under observation, and I see you. So we
2:00
Speaker 2: did the same. But what happened the condition was severe
2:05
Speaker 2: because he was after that day, in the second day
2:08
Speaker 2: he was not able to pass the stool at all.
2:10
Speaker 2: So he had gone under the X ray and city
2:14
Speaker 2: scans and then it got detected like it could be
2:18
Speaker 2: a sign of frostprung. So then I got to know,
2:22
Speaker 2: this is kind of a rares disease that happens actually
2:27
Speaker 2: every like in every ten thousand meal, like it is
2:32
Speaker 2: a rare disease. One or two cases are there. So
2:35
Speaker 2: that was a rare disease. But my child was diagnosed
2:38
Speaker 2: with a TCA that is total colonical agagliosis. So that
2:43
Speaker 2: is a rarest to rarest disease that happens like within
2:46
Speaker 2: those one percent of the student like child, it happens
2:51
Speaker 2: like one to two. So that is what the issue,
2:54
Speaker 2: like it has been identified and then we had gone
2:58
Speaker 2: like he had gone under multiple surgeries, so in a
3:02
Speaker 2: year he had gone under lake. All the five surgeries
3:05
Speaker 2: has happened. Yeah, but with the grease off board, like
3:08
Speaker 2: everything is as often it is on the track.
3:13
Speaker 1: Fantastic. It was really good to hear it as you
3:15
Speaker 1: said that total ganglion osis I mean, is I mean
3:22
Speaker 1: rarer than rare. I mean I think what is the
3:27
Speaker 1: one once or ten one one in two of the
3:30
Speaker 1: five thousand. I mean you're talking sort of one in
3:35
Speaker 1: probably several hundred thousand, if not million. I mean, I
3:40
Speaker 1: I don't know exactly what the odds are, but it's
3:43
Speaker 1: infantisallyally small, I believe.
3:50
Speaker 2: Sorry God noah, so uh, I know, like the viewers
3:56
Speaker 2: have there and they know about the hush friendlyes. But
4:00
Speaker 2: just to like in the case within the or within
4:04
Speaker 2: the colon that is called ganglion cells. So whenever it
4:09
Speaker 2: is missing, so what it does, It just passes use
4:13
Speaker 2: tools from the like small intestine, largest largest intestine till
4:19
Speaker 2: to therectim but whenever it is missing, so the tool
4:23
Speaker 2: will not be able to pass on by itself. So
4:26
Speaker 2: that particular part is called like defective but when in
4:30
Speaker 2: a case of total polonical anglosis, uh, there no ganglion
4:36
Speaker 2: cell was found in his entire large interestine. So with
4:41
Speaker 2: the surgery, the entire large intestine has to be removed,
4:46
Speaker 2: so he's like surviving on the small intestine as well.
4:50
Speaker 2: So it will take time.
4:52
Speaker 1: Yeah, most definitely. No, that's a that's a really good explanation,
4:55
Speaker 1: because again, I I tend to forget as I stit here,
4:59
Speaker 1: I usually think that everybody who's listening to this knows
5:03
Speaker 1: exactly what Hirshprung's is and knows exactly the different types,
5:07
Speaker 1: and I forget that actually a lot of people that
5:09
Speaker 1: listen to this are you know, friends and family of
5:12
Speaker 1: yours potentially, you know, and friends and family the people
5:15
Speaker 1: who who just want to hear about their friend's episode,
5:21
Speaker 1: of their friend's child episode, child's episode. And I tend
5:24
Speaker 1: to forget that actually there are people listening who don't know,
5:29
Speaker 1: you've never even heard of Hirshbrungs until they maybe click
5:33
Speaker 1: on the podcast that their friends are. So actually, yeah,
5:37
Speaker 1: explaining from time to time I think is a really Yeah,
5:40
Speaker 1: it's a really good idea, because thank you so much
5:42
Speaker 1: for doing that, Because yeah, I tend to forget. I
5:46
Speaker 1: live in a bubble, really, and I tend to talk
5:48
Speaker 1: to people who, you know, like yourself, know exactly what
5:52
Speaker 1: hirshbrungs is and what it's called, and ganglion cells and
5:56
Speaker 1: all these things that are completely normal to us. I mean,
6:00
Speaker 1: we we know what ganglion cells are, large intests and
6:03
Speaker 1: small intestine, you know, short segment, long segment. But you
6:06
Speaker 1: say that people he said, what's a ganglion cell, They'll
6:11
Speaker 1: go no idea. So I think I think we do.
6:15
Speaker 1: We do tend to live in a little bit of
6:17
Speaker 1: a bubble. But no, thank you so much for that.
6:20
Speaker 1: So in terms of diagnosis, and I think, is it
6:25
Speaker 1: around about two months of diagnosis or was it a
6:28
Speaker 1: bit earlier than that?
6:31
Speaker 2: So in then issuests on a third day after his birth,
6:35
Speaker 2: so uh, actually he has been diagnosed. So that actually
6:41
Speaker 2: has been done and some kind of dates input from
6:45
Speaker 2: his nose. So the upper body diagnosis was done and
6:50
Speaker 2: on time go tame are like multiple exodies has been
6:55
Speaker 2: done after and that like after every hour it has
6:59
Speaker 2: been done eight to ten hours. Then it was confirmed
7:03
Speaker 2: this is having a sign. So as per your question,
7:07
Speaker 2: so it is in the earlier stage it was identified.
7:10
Speaker 2: But after two months it got severe because for ten
7:15
Speaker 2: days he was not able to pass a stool and
7:19
Speaker 2: he got fewer actually, and the fever was because of
7:22
Speaker 2: the infection that was in the body, So just because
7:27
Speaker 2: of not passing the stool and that stool was creating
7:29
Speaker 2: that particular infection within the body. So after like for
7:33
Speaker 2: ten days he was not able to pass this stool,
7:35
Speaker 2: then we had like rushed to the nearest nursing room
7:39
Speaker 2: and we connect contacted the doctor and again this thing
7:44
Speaker 2: and this thing was diagnosed from the lower section of
7:47
Speaker 2: the of the body, so from rectum they have put
7:51
Speaker 2: the die and then it got detatled like now the
7:55
Speaker 2: ganglion cells are missing and that is that is a
7:58
Speaker 2: sign of us strung. And since the infection level is high,
8:01
Speaker 2: so it has to be operated and immediate business. So
8:05
Speaker 2: that is what has happened. And at the end, the doctor,
8:09
Speaker 2: the doctor whom we consulted and the first surgery happened,
8:13
Speaker 2: so she told that it is a miracle that he
8:15
Speaker 2: has survived for two months because earlier in the earlier stage,
8:19
Speaker 2: if a child is diagnosed with this kind of disease,
8:23
Speaker 2: it is like very rare if not operated, so it
8:26
Speaker 2: is rare for them to survive. So like I thank
8:30
Speaker 2: to what because of him? Like yes, right, and we
8:35
Speaker 2: have assumed him.
8:36
Speaker 1: Yeah, No, that's incredibly fortunate because again it's one of
8:40
Speaker 1: those conditions, isn't it, where the longer it goes sort
8:44
Speaker 1: of untreated, the more chance you got a fevers, infections
8:49
Speaker 1: SEPTS is obviously being something that is is very much
8:53
Speaker 1: connected with hirsh Brun's as well. And you talked about
8:59
Speaker 1: the first surgery. Was the first surgery the pull through or.
9:03
Speaker 2: Was it something else? So first surgery was it was
9:09
Speaker 2: a pull through because she has created a storma because
9:15
Speaker 2: he was not able to pass the tool. So with
9:16
Speaker 2: this tuma section he has to go and like pass
9:20
Speaker 2: the stool. So that has happened. And the second surgery
9:25
Speaker 2: was like she told told us that after like five
9:28
Speaker 2: to six months, the stuma will be closed and everything
9:31
Speaker 2: will be normal. So the first surgery happened and the
9:35
Speaker 2: pull pull through was there with within the section they
9:39
Speaker 2: have created and created the storm and the first stuma.
9:42
Speaker 1: Yeah, and is the storma there? Now? Was the stormer
9:46
Speaker 1: closed on the second surgery, So what has happened?
9:51
Speaker 2: Actually it was supposed since it he was operated in
9:57
Speaker 2: the month of June, so that another surgery was supposed
10:01
Speaker 2: to be happened in the month of November, but unfortunately
10:06
Speaker 2: there is like hypoallergic kind of I forgot the name
10:11
Speaker 2: of the milk. The formula formulated milk was there, so
10:16
Speaker 2: she recommended that particular powder and like that, after consuming
10:20
Speaker 2: that particular powder, his health was good. But what has
10:24
Speaker 2: happened that he was not able to pass us to
10:28
Speaker 2: since the tuma was not created properly because in the
10:34
Speaker 2: condition where we admitted him, he was like having a
10:39
Speaker 2: high level of infection in the body. So it is
10:42
Speaker 2: it was on the discretion of doctor to take the
10:44
Speaker 2: diseasion whether to create this tuma from a small intestine
10:49
Speaker 2: section or the lower section of the small section of
10:55
Speaker 2: the this thing intestine. So that was not successful. So
11:00
Speaker 2: in the month of August he has to be operated again,
11:04
Speaker 2: like he was operated again because of the emergency case
11:08
Speaker 2: he was not again he was not able to pass
11:10
Speaker 2: us tools. So it means the first he was not successful,
11:15
Speaker 2: so another storma has been created. So in the second case,
11:20
Speaker 2: it's it had been created before the stipulated time, like
11:25
Speaker 2: instead of remember it has been done in the month
11:28
Speaker 2: of August itself.
11:31
Speaker 1: Now, so the first first one not being successful, the
11:35
Speaker 1: second one second one successful.
11:38
Speaker 2: So second one was since doctor had got the experience
11:43
Speaker 2: of like his condition medical condition, because from one doctor
11:46
Speaker 2: only we were consulting, so she told that now she's
11:52
Speaker 2: going to create the tuma from small intestine. Now on
11:56
Speaker 2: that particular interestine that can be like that will give
11:59
Speaker 2: us an extra time, a buffer time to stay and
12:02
Speaker 2: just let the baby develop, because multiple surgeries can't be happened.
12:06
Speaker 2: So that is also one of the cases if baby
12:09
Speaker 2: is not gaining the weight, so then if he's going
12:13
Speaker 2: to be operated, then it is very whiskey for his life,
12:16
Speaker 2: so he has to gain the weight as well. So
12:19
Speaker 2: although because because of the real condition and emergency situation,
12:24
Speaker 2: it has happened like second surgery within a month, but
12:29
Speaker 2: it has to happen after six months. So that was
12:32
Speaker 2: created from the small intestine and just to and we
12:36
Speaker 2: were just waiting to let him gain the weight. So
12:41
Speaker 2: as soon as he will gain the weight, then that
12:44
Speaker 2: were like that has given us an emple amount of
12:47
Speaker 2: time to be ready. Like from our mindset.
12:53
Speaker 1: Now it's usually there is sort of a big gap
12:55
Speaker 1: between so the first and the second because they kind
12:59
Speaker 1: of want to say, again, I'm just going off from
13:02
Speaker 1: from what other people. It's on me and other parents,
13:04
Speaker 1: it's on me. They tend to be they just sort
13:06
Speaker 1: of want to see how things progress, and things like
13:11
Speaker 1: food and diets and you know, lots of other things
13:15
Speaker 1: that they just sort of want to see progressed with
13:17
Speaker 1: that sort of similar situation for you.
13:22
Speaker 2: So, yeah, that was there because from a diet section,
13:26
Speaker 2: if we'll say still he is having some issue having
13:30
Speaker 2: like more quantity of iron, he won't be able to
13:35
Speaker 2: digest properly because his stools will be like loose. If
13:40
Speaker 2: we are giving more fiber, so he will be able
13:44
Speaker 2: to like he will frequently do the emotions. If we
13:50
Speaker 2: include less fiber, then it will be constipation for him.
13:55
Speaker 2: So that was the situation. And we had asked doctor
14:00
Speaker 2: like what to give. We are unaware of the thing.
14:03
Speaker 2: So they told us like, there is no set rule
14:06
Speaker 2: for that because it depends on the child child's condition,
14:09
Speaker 2: how the body reacts, So you have to do a
14:13
Speaker 2: trial and test. So you just give the food and
14:16
Speaker 2: if he's passing the stool properly, it means it is
14:20
Speaker 2: like good for his health. For his body, like his
14:23
Speaker 2: body is accepting. If it is like the stool is loose,
14:27
Speaker 2: then it is not good for his health. So that's
14:29
Speaker 2: how like we learning what to give what not to give.
14:32
Speaker 1: Yeah, yeah, so it does. It does sound a lot
14:36
Speaker 1: like his trial trial and error, isn't it. It's kind
14:39
Speaker 1: of you know, you try one thing, whether it works,
14:43
Speaker 1: whether it doesn't work, and then you sort of I
14:45
Speaker 1: guess you have to sort of take that one off
14:47
Speaker 1: and saying, right, we try that it does work, we
14:49
Speaker 1: try that it doesn't work, and then just and I
14:52
Speaker 1: see that with so many people where hush promise is
14:56
Speaker 1: that type of condition where there isn't real a set
15:02
Speaker 1: rule as you said, you know, or a book. If
15:05
Speaker 1: somebody could produce a book that said you need to
15:07
Speaker 1: do a B, C and D and then everything will
15:10
Speaker 1: be fine, that would be amazing. But there's so many
15:13
Speaker 1: different was there about six different types, and each different
15:17
Speaker 1: type everybody reacts differently. Everybody has a different amount of surgeries,
15:23
Speaker 1: different amount that you have. Some can eat this, some
15:26
Speaker 1: can't eat that. And I guess from parental point of view,
15:31
Speaker 1: that's I guess it is the only thing you can
15:34
Speaker 1: do is trial and error. I guess, yeah, it tends
15:39
Speaker 1: to be kind of yeah, and I see that with
15:42
Speaker 1: quite a few people where they they just have to
15:45
Speaker 1: sort of yeah, see how they go. And then you
15:49
Speaker 1: might find as well that it's anything like my case,
15:52
Speaker 1: where there'll be some foods that disagree with you when
15:54
Speaker 1: you're younger that you're absolutely fine when you're older, which
15:58
Speaker 1: makes no sensebsolutely. Nobody can quite figure it out, but
16:04
Speaker 1: I guess that could be could be a situation you
16:06
Speaker 1: find yourself with your son as well, So I guess
16:11
Speaker 1: it's just sort of quite And see in terms of
16:15
Speaker 1: fucking back sortly to the surgeries, how many surgeries that
16:19
Speaker 1: been in total?
16:23
Speaker 2: How many suges has happenedly, Yeah, so the second surgery,
16:28
Speaker 2: as I tooled len that has happened in the month
16:30
Speaker 2: of August.
16:32
Speaker 1: Uh.
16:32
Speaker 2: Then we have changed the doctor because we were like
16:39
Speaker 2: the answers were not satisfactory. Because it's that is also
16:42
Speaker 2: one of the point that we should stick although the
16:45
Speaker 2: condition of the baby is not good, but we should
16:48
Speaker 2: have like multiple opinion from my experienced doctors as well.
16:52
Speaker 2: So and like another experience doctor we had gotten consulted him,
16:58
Speaker 2: so he suggested us to go with the what we say,
17:03
Speaker 2: taking the sample of the from the part of like
17:08
Speaker 2: large interestine whether because I insisted, like why not to
17:12
Speaker 2: go ahead and like check it again whether the ganglion
17:15
Speaker 2: cells are not are present or not, because in the
17:18
Speaker 2: previous biopsy, so some science we have seen like there
17:24
Speaker 2: could be chances of having the ganglion cells. And I
17:27
Speaker 2: want to like point out one more thing. If ganglion
17:30
Speaker 2: cells are not present since birth, that is what from
17:33
Speaker 2: the doctor's studies, what they have suggested us with the
17:37
Speaker 2: like growing age, it won't develop if it is not
17:40
Speaker 2: present from the birth, there is no chance, zero chance
17:44
Speaker 2: of developing it. So it means that God has created
17:49
Speaker 2: the passes, but in between here has stopped the passes.
17:52
Speaker 2: So thereafterwards nothing is there. So if it is not there,
17:56
Speaker 2: at won't video. So that is what like we were
17:58
Speaker 2: having the being a father, being a mother of a child,
18:03
Speaker 2: like my wife is there. So we had hope to
18:08
Speaker 2: go ahead and uh, let it go, like there could
18:12
Speaker 2: be chances of having the ganglion cells and we can
18:15
Speaker 2: escape this particular process of removing the entire large interest
18:20
Speaker 2: time from the body. But unfortunately another biopsy said the
18:25
Speaker 2: same thing. The results had gained and no ganglion cells
18:28
Speaker 2: were there, so after that another storma had been created.
18:36
Speaker 2: So the surgery happened in the month of April, and
18:40
Speaker 2: then the closer was there, that is what that was
18:43
Speaker 2: the pull through in the month of me So in total,
18:47
Speaker 2: like including the biopsy, we like biopcy was also a
18:51
Speaker 2: minor surgery. So there were like four to five.
18:53
Speaker 1: Series four or five insults. So okay, and and troh
18:58
Speaker 1: happens sort of relatively quickly, I guess in most circumstances
19:03
Speaker 1: of hirshprungs within the first sort of eighteen months or so.
19:07
Speaker 2: Is that about right? Yeah, yeah, sure, because in the
19:13
Speaker 2: month of March he had worked so Mars to March
19:18
Speaker 2: one year and then yeah, so fifth within fifth and
19:22
Speaker 2: the sixteen months or or do fave.
19:27
Speaker 1: Yeah, So it's sort of fairly sort of not that
19:30
Speaker 1: there's really a standard case of total intestinal there isn't
19:34
Speaker 1: really that it's so rare that there's not as much
19:37
Speaker 1: research on it. I mean, I think the am probably
19:41
Speaker 1: three three stories in the last eighteen months of people
19:45
Speaker 1: you have, So it's I mean, it's rare, as we
19:48
Speaker 1: said before, but it's sort of raer than rare. I mean,
19:52
Speaker 1: you know, I I quite know all the chances and
19:55
Speaker 1: and everything, but that is, yeah, phenomenally phenomenally rare. And I
20:01
Speaker 1: think we've sort of touched on a little bit of
20:05
Speaker 1: diet and touched on a little bit of how both
20:11
Speaker 1: you and your wife found your life after the diagnosis.
20:18
Speaker 1: What did you Obviously it came as a you know,
20:20
Speaker 1: I imagine a big shock to both of you. How
20:24
Speaker 1: did you kind of manage that process between you between
20:31
Speaker 1: the diagnosis and yeah, just just in terms of sort
20:35
Speaker 1: of dealing with the the shock I guess of having that. Ah,
20:43
Speaker 1: so unfortunately, like just.
20:46
Speaker 2: My maybe god birth like he got birth in the
20:50
Speaker 2: month of March, don'd key, my father had expert in
20:54
Speaker 2: the month of December.
20:56
Speaker 1: Sorry to hear that.
20:58
Speaker 2: Yeah, So, like we were kind of going through one
21:03
Speaker 2: like one like kind of sentiment and although we were
21:09
Speaker 2: very happy that we have got child, but when again
21:13
Speaker 2: things happen, so it was very difficult for us to
21:16
Speaker 2: handle the situation and that particular of time, so like
21:21
Speaker 2: we were thinking, like why it is happening with us
21:26
Speaker 2: because one thing, as we are also already going through
21:29
Speaker 2: the hard time and again the God has given up
21:34
Speaker 2: given us a gift. But that is kind of like
21:38
Speaker 2: you can consider it is a like kind of defect
21:41
Speaker 2: is there, So that kind of thing we were having. Uh,
21:45
Speaker 2: that was very hard time actually for us because we
21:49
Speaker 2: were like the same kind of thing was happening like
21:53
Speaker 2: my father was when he had died, Like kind of
21:55
Speaker 2: things were there. Although it is out of the context
21:58
Speaker 2: in this particular podcast, but the thing is like he
22:00
Speaker 2: was like at the during the end of his life,
22:05
Speaker 2: so he was also having this tuma end of like, yeah,
22:10
Speaker 2: he was having the carcinoma. He had the carcinomn for
22:12
Speaker 2: that he got treated, so he had two pouches created,
22:17
Speaker 2: like two stumas were there. So we were thinking like
22:20
Speaker 2: whether it is resembling with the situation and since it
22:25
Speaker 2: is very recent the incident happened, so it was like
22:30
Speaker 2: very difficult for us to emotionally, mentally and financially as well. Yeah,
22:35
Speaker 2: so so the diagnosis happens, so it was really a
22:40
Speaker 2: big shop for us, so how the things will go.
22:43
Speaker 2: But initial days were okay and then he started passing
22:48
Speaker 2: these tools. As I told, like from the first surgery,
22:52
Speaker 2: from the birth till first surgery, he was fine, doing
22:56
Speaker 2: fine with the grace of what the things were happening.
22:59
Speaker 2: So then we forward everything like no other things are normal,
23:03
Speaker 2: just like we thought like that things will be okay.
23:06
Speaker 2: So that we we considered like that was the time
23:09
Speaker 2: that had gone No, it is okay. So that was
23:12
Speaker 2: the feeling, like mixed of the feeling was there. So yeah,
23:17
Speaker 2: that that that that is what like we had that
23:19
Speaker 2: kind of feeling and sentiments doing that thing.
23:21
Speaker 1: Yeah, yeah, and understandably and incredibly incredibly difficult time. And
23:26
Speaker 1: I guess it just shows how how strong both you
23:29
Speaker 1: and your wife are that you managed to get through
23:32
Speaker 1: that through that time. And now to the point, I think,
23:35
Speaker 1: as you you said right to the beginning, now your
23:39
Speaker 1: son's doing doing really well, you know, and and is
23:43
Speaker 1: sort of doing everything you sort of alluded to doing
23:48
Speaker 1: everything you know, all the other children do, I guess.
23:52
Speaker 1: And on that point, I guess sort of with him,
23:58
Speaker 1: how how is he now sort of voice healthwise and
24:03
Speaker 1: kind of in life wise.
24:08
Speaker 2: So health wise I will come to the health wise
24:11
Speaker 2: then in general I will tell So we had connected
24:16
Speaker 2: with contacted the doctor and they told us like it
24:18
Speaker 2: will take around like forty five years around because our
24:25
Speaker 2: mechanism is like that like if we are eating something
24:31
Speaker 2: then it will go through the small intestine, then from
24:34
Speaker 2: the largines interestine, then it goes out from our body.
24:38
Speaker 2: But for in his case, the entire section is not there,
24:43
Speaker 2: so to adapt for that particular thing the mind will
24:46
Speaker 2: take time. That we have like a small intestine has
24:51
Speaker 2: to store the stool and then it will pass. So
24:56
Speaker 2: that will take around like five years of time at
24:59
Speaker 2: least to settle down so medically. So that is there.
25:06
Speaker 2: We are also having kind of challenges. So what has
25:08
Speaker 2: happened after surgery. He was passing us tools around like
25:13
Speaker 2: six to seven times in a day, but now it
25:16
Speaker 2: has reduced to like three to four times or five
25:20
Speaker 2: times back. So gradual improvement is there, but it will
25:24
Speaker 2: take time since it is a small interestine. So that
25:29
Speaker 2: is that is the part where the juices are created.
25:33
Speaker 2: But that juice consider like contains the acid as well.
25:37
Speaker 2: So whenever we like somehow like if we are having
25:42
Speaker 2: the uh busy time and we forgot to like clean
25:48
Speaker 2: clean the part, okay, so it it it is it
25:52
Speaker 2: leaves the patches that kind of patches, so we we
25:57
Speaker 2: should be very postious while cleaning, Like we have to
26:00
Speaker 2: take care of him closely, like as and when he
26:04
Speaker 2: is doing passing the stool within an hour, we have
26:06
Speaker 2: to clean it. So that is what the medically things are.
26:09
Speaker 2: But the things are like gradually in improvement life is
26:12
Speaker 2: is like hyperactive. So if you can allow me so
26:16
Speaker 2: I can just bring him on this podcast as well.
26:20
Speaker 2: Absolutely sure. Just give me a moment, yea, just give
26:25
Speaker 2: me a moment. He's just coming.
26:27
Speaker 1: That's absolutely far. That would be great, great ball the
26:31
Speaker 1: ball because a lot of said, I don't meet many
26:34
Speaker 1: people who have his exact type of her strums, and
26:39
Speaker 1: it's it's always always great to say, ah, welcome the Hi.
26:45
Speaker 2: Hi, yeah, I.
26:50
Speaker 1: How are you.
26:53
Speaker 2: Well? I am good?
26:54
Speaker 1: Hey you good, excellent, Except we've just been talking about
26:59
Speaker 1: you and all of your hirshbrons. Your hirshbrons cond be shipped.
27:09
Speaker 2: Yeah, I did understand English, but so.
27:12
Speaker 1: Yeah, absolutely no, thank you. I mean we've been chatty
27:17
Speaker 1: a little bit. I think you're the youngest guest I've
27:23
Speaker 1: ever had. Amazing thank you. I mean, look it looks
27:32
Speaker 1: again one of the screw Yeah, there've been again. It's
27:40
Speaker 1: one of those things hirshbrongs where if you were to
27:45
Speaker 1: look at any one of us with hirshbronx, you you
27:49
Speaker 1: wouldn't be able tof you were to line up ten
27:51
Speaker 1: people in a row and say spot the person with hirshbrons,
27:53
Speaker 1: you wouldn't be able to tell. And this is exactly
27:57
Speaker 1: the same with your son, I mean exactly the same.
28:00
Speaker 1: You know, incredibly jolly happy and that's fantastic. But I
28:08
Speaker 1: guess it's in terms of speaking a little bit about
28:12
Speaker 1: his health now and in terms of what he's how
28:18
Speaker 1: he is as as a child. Now, is he sort
28:23
Speaker 1: of sort of all would you be able to tell necessary?
28:26
Speaker 1: Is he just a normal happy child, et cetera.
28:31
Speaker 2: So his happiness and how he's doing right, Yeah, yeah,
28:36
Speaker 2: so he's doing finely, just like a normal child. He's
28:40
Speaker 2: doing he's he's kind of like kind of naughty now
28:44
Speaker 2: so you can just hear the voice from the background
28:49
Speaker 2: as he so, but everything like now we forget whatever,
28:55
Speaker 2: Like the time has been passed, so from his activity
28:59
Speaker 2: you can and he interacted right away, so from that
29:04
Speaker 2: point of time like that is also fine as not
29:08
Speaker 2: just like normal child. He's doing the same things so
29:12
Speaker 2: activity ways, like he's very like he has becoming actors
29:17
Speaker 2: as well, like he's doing watching the cartoons and then
29:20
Speaker 2: doing the actings as well, so we never think like
29:25
Speaker 2: he's having the same disease unless the particular section comes
29:30
Speaker 2: in our life, just to go ahead and see and
29:33
Speaker 2: take you know, the things. Apart from that, everything is
29:36
Speaker 2: just like normal things.
29:38
Speaker 1: Brilliant. No, that's that's so good to hear, because again
29:42
Speaker 1: with people with Hirshprungs, we go through when you said
29:47
Speaker 1: you have four or five surgeries, you already I mean
29:50
Speaker 1: probably has had more surgeries in his short life thus
29:56
Speaker 1: far than most people will ever have in their entire lives,
30:00
Speaker 1: you know, I mean, most people may have one, possibly
30:03
Speaker 1: one to two surgeries, but with Hirshprungs, it's unavoidable. So
30:09
Speaker 1: to see that he's really happy, healthy, it is so
30:14
Speaker 1: so good to see, so good to see. And I
30:18
Speaker 1: guess as we sort of come to the end with
30:22
Speaker 1: this in terms I know, we've spoken a little bit
30:24
Speaker 1: about his health now and you know what he's doing
30:29
Speaker 1: and school and everything, and what he's doing now. In
30:33
Speaker 1: terms of the future, I know, it's quite difficult to
30:37
Speaker 1: predict with Hirshprungs at the best of times, especially with TIA,
30:41
Speaker 1: incredibly difficult to predict. But in terms of what the
30:45
Speaker 1: future looks, like him again both sort of health wise
30:50
Speaker 1: and sort of normal life wise. What do you see
30:56
Speaker 1: potentially in the future.
30:59
Speaker 2: So coming to the health phase, what we have observed
31:03
Speaker 2: and what doctor has told, like there would be a
31:07
Speaker 2: challenge of having the weight, so that would be one
31:11
Speaker 2: of the challenges that we'll be having. But gradually he's
31:15
Speaker 2: learning the things. But what we are thinking is like
31:19
Speaker 2: five years or seven years down the line as and
31:22
Speaker 2: when Like he's also like very kind of intelligent, catching
31:26
Speaker 2: the things early, like very early. So if we make
31:30
Speaker 2: her and make him understand the things, so he will understand.
31:35
Speaker 2: So what we are thinking, some parts would be there
31:39
Speaker 2: that he has to take care of, although we are there,
31:42
Speaker 2: we would be taking care of, but we want him
31:46
Speaker 2: to learn the things like what to take, what not
31:48
Speaker 2: to take, what is good for help, So these kind
31:51
Speaker 2: of things will be there. But with the little education,
31:54
Speaker 2: the things will be happen and he will like like
31:59
Speaker 2: almost he will live a normally like close to normally.
32:04
Speaker 1: That yeah, as normal as we can with hershbrungs. Yeah, fantastic. Well,
32:11
Speaker 1: I just wanting to say thank you so so much,
32:14
Speaker 1: I guess to both of you, both you and just son,
32:16
Speaker 1: because you both made an appearance, coming on and sharing
32:20
Speaker 1: his story. It's a gut, as I said, meeting people
32:24
Speaker 1: with a total intestinal ganglinosis type of Hirshbrungs. I mean,
32:31
Speaker 1: he's so so rare, and undoubtedly I have people who'd
32:36
Speaker 1: listen to this this show who have the same type
32:39
Speaker 1: of Hirshbrungs and really want to hear more stories. So
32:43
Speaker 1: to have you on to share your stun Sun's story
32:45
Speaker 1: and to have him on as well has been brilliant.
32:48
Speaker 1: So I just wanted to say thank you so so
32:51
Speaker 1: much for coming on. It has been been really really
32:54
Speaker 1: good to chat to you. And I know it goes
32:56
Speaker 1: without saying, but I'll say anyway that'll wish you You're on,
33:00
Speaker 1: your wife and your family the very very best in
33:04
Speaker 1: the future.
33:06
Speaker 2: Thank you, Tom, Thank you very much. You were gals.
33:11
Speaker 1: Sorry go yea.
33:13
Speaker 2: So Tom, I would like to thank you as well
33:16
Speaker 2: for the for doing this particulary great job you're doing
33:20
Speaker 2: because when we encountered this situation in our life, this
33:24
Speaker 2: was the very first time and that is like with everyone,
33:28
Speaker 2: this is a very shocking thing that this happened. This
33:31
Speaker 2: is very unfortunate. But with your podcast, people will be
33:35
Speaker 2: able to understand the things in a better way, and
33:40
Speaker 2: they will also be able to connect with the people
33:43
Speaker 2: who had already passed through these kind of situations. So
33:47
Speaker 2: that is very great effort, very very great initiative you
33:50
Speaker 2: have taken and educating people regarding this particular disease. Even
33:54
Speaker 2: we have thought of creating a channel, but unfortunately we
33:57
Speaker 2: didn't get time to start. But you are there me.
34:01
Speaker 2: That is way like God screeted the tank and will
34:04
Speaker 2: go where and I'll we come to the podcast and
34:06
Speaker 2: we'll discuss it about So we was thankful to you
34:11
Speaker 2: while creating this part.
34:12
Speaker 1: Good to Elia, no problem, and feel free to create
34:16
Speaker 1: your own channel anytime. The more channels, the more podcast
34:19
Speaker 1: we have Hirsprungs, the better. Hopefully I don't have a
34:23
Speaker 1: monopoly on it forever. The more more people, the more,
34:26
Speaker 1: the more channels the better. But yes, thank you so
34:29
Speaker 1: so much for coming on. It has been it has
34:31
Speaker 1: been great chat to you. Thanks Tom, Thank you for
34:38
Speaker 1: listening and being part of this growing community. If you
34:41
Speaker 1: have enjoyed the episode, don't forget to subscribe, leave a
34:44
Speaker 1: review and share it with someone who might need it.
34:47
Speaker 1: You can connect with us on social media via Instagram, Facebook,
34:51
Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast. See you
34:55
Speaker 1: next week.