Latest / Tom's Hirschsprung's Podcast / Episode 2 - Part 1 of my interview with Kyla Thomson @kylact

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Episode 2 - Part 1 of my interview with Kyla Thomson @kylact · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshprung's Podcast, where I provide a look into the
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remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Welcome to
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episode two of Tom's Hirshprung's Podcast. This is the first episode to feature a
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very special guest. She's an entrepreneur, a medical man, a content creator,
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and an all round inspiration for others. She's Kyler Thompson. Kyla,
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how are you hi? Hi? This is my husband, Lyle. He's
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just grabbing some he's grabbing some hockey gear, taking our son for a skate.
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We're from Canada, so playing some hockey today. Yeah, and thanks
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for that introduction. That's awesome. How is your new You been so far
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really really great, very typical, not very medical, which has been a
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nice change for us. Yeah. Yeah. We got to be home and
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see family and friends and just you know, take it easy and feel relaxed,
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live a normal life. Yeah. Before we get started into what's happening
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today, the fantastic work that you do, Bella do, and and your
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family do, I want to take a short view back to the past into
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Bella's miraculous medical journey and her three extremely rare, rare conditions. What were
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they? She had she was born with, but we didn't know at the
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time, of course, that she had uh hirsh Friend's disease, which eventually
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was labeled long segment hrsh friend hirsh Friend's disease, as well as no immune
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system which is called severe combined immune deficiency. That meant she had no T
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cells and no B cells when she was born, no infection fighters, no
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virus fighters. And she was also born with dwarphism that is I'm still genetically
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it's a mystery. She her genetics geneticists in both provinces Saskatchewan and Alberta took
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two years to diagnose her with Karla chi hypole hypoplagia related to Omens syndrome.
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And there's still lots of learning about her form of dorphism that is also very
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rare. So so yeah, so she's very much still a walking medical mystery
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experiments all of those things, I guess miracle. Yeah, she's she's brought
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light, I'm most you know, out of the darkness of those conditions.
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She has helped specialists all over the world realize more about each one of these
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conditions, and because each one of the conditions she has, she has the
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most rare form of But there's other forms of these conditions that are less rare
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and more common, and she's helping kids with those like typical hirshrumps or a
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different form of immune deficiencies and dwarphisms. So she's like this rare gem that
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is helping such a like a vast part of the rare disease community that that
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must give. Does that give you and their enormous sense of pride? I
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guess as well that yes, you've had like incredibly I guess, unfortunate luck
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with having so many conditions all at once. I mean, what are the
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chances? Yeah, but does that give you a sense of pride that you're
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really going out And obviously we'll talk about all the other fantastic work and you
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and bell are do as well, but that just by having these conditions you
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are you are helping people as well. Yeah, I think I look at
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it as you know, it's bell as ten now, So it's been ten
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years of picking up pieces of what each of these rare conditions mean and still
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learning year by year. So the first couple of years you know, they
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were really dark and scary and unknown. Not just for a month or two
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till we got a diagnosis. It was over two years till we got full
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diagnosis of everything. And so it it's for me, it's more like,
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Okay, now that I understand what each of these conditions actually mean and due
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to a person that has them, I'm just happy that the knowledge that we
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have we can help other people with because as far as we know, there's
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no one out there in this in this world that has a story like ours,
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but there's lots of people that have stories that are similar, you know,
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in the medical world. And I'm just happy that we are. We
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have come out on the other side in a sense that my my child is
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still alive. Fella's alive, she's thriving, and I'm just happy we can
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give other people hope. Yeah, for sure, for sure. Yeah,
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and just for anybody obviously, this this podcast is very much about helping people
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who do go through Hirshbrun's and other associated conditions. But just to be to
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be sure there's no signs during pregnancy, nothing was said to no, no,
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nothing. There was a couple of clues with her dwarfism and that was
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it. Our province at the time also did not screen for SKID, where
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as I think every state in America does. There's more provinces now that do
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in Canada. But you know, we if there was more testing done for
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newborn in our in our area at the time, we would have known at
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birth, but we didn't have that. So yeah, during pregnancy, the
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only clue to her being little was her doctor noticed that her growth in the
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womb kind of plateaued around the you know, second trimester, and so my
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doctor sent me for an MRI. But she was looking great that They were
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really happy with how she was breathing and looking and like she was like a
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great baby. She was very active. She let me know she was there,
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she's ready to party, and they were like, yeah, she just
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might be little. And at the time, I had no connections with anybody
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with dwarfism, so I was like, oh, so she'll be smaller,
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maybe just a smaller human, But I didn't realize that that meant dwarfism at
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the time. Nice absolute clues at all. I want to talk about skied
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as well, because it wasn't something that I had heard of at all,
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and doing the research into SKID. I've noticed there's been a big UK review
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into SKID around here and it's going through till March twenty twenty four. I
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mean we've had SKID for for quite a while. Yeah, but it's not
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it's not everywhere, is it, And it's it's so vitally important, and
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you want to share some of your experiences around SKIED and why that's so so
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important to catch early. Yeah, it is so important to catch early.
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I know through through being and living in the medical world with Bellas immunologists and
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hematologists you know that have helped her through her bone marrow transplant for SKID,
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they are much more aware of what screening can do for newborns. If Bella
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would have been screened at birth, it would have saved us an entire year
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in hospital. She spent the first two years of her life in hospital consecutively,
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and a large part of that was SKID was just unknown in our country
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as a whole, especially our province. Also, having found out she had
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hershpruns Dissy's at three days old, overshadowed everything else. It was all about
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keeping her alive because her bowels were so affected. So SKID was like on
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the back burner. We just you know, we didn't even realize she didn't
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have an immune system. We didn't we didn't know what SKID was until we
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got transferred to a hospital in the province next to us, Alberta. And
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thankfully, our immunologists at the time had dealt with two other cases so far,
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so Bella was like one of her first in Canada to figure out.
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And then on top of that, I remember so our immunologists when we found
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there's a whole story about how we found out she had SKID at eleven months
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old, but I remember our specialists in Calgary constantly reaching out to specialists in
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Newcastle. That was like they really knew what how to deal with SKID and
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they got a lot of their bone marrow transplant learning from from Newcastle, so
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we have a connection there. So I was really thankful. I learned a
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lot about how much that that that hospital in Newcastle did for patients and babies
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with skin. But it was you know, hersh friend's disease. Having been
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bored with that and that being the focus really kind of overshadowed the fact that
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Bella was also born with no immune system. And I remember when we found
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out she had skied. Her specialists told me, and that you don't hear
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this from a doctor very often, but they told me they don't know how
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she's alive, and it's a miracle she's survived. That's incredible, absolutely incredible.
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How what do you I guess it's difficult go right back to that time,
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But how do you feel at that point when they say, well,
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we don't know, it's a miracle runs through because I know very similar to
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my parents when they said to my parents, yeah, we're not too sure
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how he's going. He's just keeps going. And I remember speaking to my
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parents about it and they said, well, we didn't really know what to
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think. So how was that for you? Being told, well, we
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don't really know what's going on, but she's still here and she's still go
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in. How does that feel? You know, there's there's quite a comparison
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with Hirshbrungs and skid for Bella that's always really darkened the Hirshprungs disease. For
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me, I feel for people that have that because with Hirshbrungs, trying to
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figure that out for her from three days old was always a hit and miss.
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It was a surgery, another surgery. Nope, that surgery didn't fix
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it. We're still having problems. And those problems were graphic and harsh,
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like I would see my baby from three days old until she was a year
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throwing up like ten, you know, eight ten times a day, can't
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keep anything down, and then her bowels being so affected that you know that
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that was Stuell coming up sometimes and it was really really really hard that first
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year and nothing was fixing it. She had four bowel surgeries before we found
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out she had SKID. So that's where the doctors were flabber acid because they
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had gone in worked on her bowels, exposing her entire blood system to steel.
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And of course, thank god, like they're so good at what they
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do. But even like skid the common cold, you know, babies don't
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survive the common cold when you don't have any meane system like, let alone
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bowel surgery. So she had gone she had gone septic, and they were
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thinking, oh, well, she just had bowel surgery, you know her,
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you know, she's septic because steele got in her blood system. Meanwhile,
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it's like nor her body legit can't fight it. So that's where they
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were like, how is she alive? You know, and with the the
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just going back to how hirshbrungs and SKID are so like, hirshbrngs is so
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much more difficult to deal with. When we found out she had SKID,
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they had fixed. They were like, Okay, we know she has no
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immune system. We put her on the donor registry, we get our donor,
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we get her a bone male transplant. That's a fix. Hirshbruns,
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there was never a fix. It was always surgery that didn't work, or
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treatments or you know, just so many medical procedures to try and help her
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bowels work until we got to the point where they said she needs a transplant.
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They need to be completely removed. Yeah, yeah, yeah. I
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just wanted to touch on bone marrow transplant because recently, I think the twenty
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second December, it was time to give blood I think every sort of four
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months or so, and they said, do you want to be on the
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bone marrow transplant list? And I didn't really know what it was. Despite
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having hirst sprungs, despite going into out of hospital for eighteen plus years,
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I didn't really know what it was. And I thought, you know,
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it's really complicated, and you know that I enough to go in and take
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stuff out your hip and all of this stuff. But I've got the pamphlet
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here, and really it's it's there's there's now two ways of taking bone marrow.
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You can do the old fashioned way, the going through the hip and
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whatnot, but you can have bone marrow through blood blood stem cells. So
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again, this podcast is sort of all about inspirational stories but also educating as
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well. And for anybody who thinks, oh, it's going to be really
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painful, it's going to be really horrible, it's going to be this,
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that the other all. Now you can give bone marrow through blood stem cells.
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You take it says here, you take a special drug for four days
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which encourages the blood stem cells to move from your bone marrow to the bloodstream
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so it's not as painful or as horrible as it sounds. And then they
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just take it out your blood on the fifth day. So for anybody who
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was thinking, oh, it's going to be horrible, it's going to be
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this, it's going to be that. For me when I signed up for
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it, all they do is just you take take the blood as normal,
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and then they just take an extra little little vial of blood. So it
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really isn't as as horrible as you think it is. It's exactly the same
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as giving blood. So if anybody's out there and they think and it's a
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great thing to do, because there will always be people who need bone marrow
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transplants, and if you're ever on the fence about getting yourself on that list,
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definitely do it. Definitely do it because it is it is so vital
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as you will as you well know it's it's so incredibly vital. And if
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you'll you know, if you're all right with giving blood, and you'll be
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all right with giving giving bone marrow samples. So that was just an aside
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really for me that I thought, which is really really important. So I
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said, with the bone marrow transplant, was about fifteen months into ta Bella's
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life, is that right, Yeah, So she we found out she had
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skid at eleven months old, and from there they they they took our blood
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and realized, okay, neither of you are a match. So just my
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husband and I we didn't have her little brother at the time, so they're
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like, okay, we're gonna put her on the National Registry. And it
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only took about two months to find a donor, so that was relatively quick.
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That was good, but since Bella was already extremely immune compromised dealing with
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hirshbruns in hospital, she was at high risks, so they wanted to find
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her a donor fast, so that even though it was just two months to
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find a donor, it was a hard weight because she was she wasn't allowed
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to eat, she wasn't allowed to risk aspiration, she was surviving off of
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IV's and yeah, two months set seemed much longer, but in hindsight,
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it's actually a pretty quick way to find a donor. So they found her
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donor and set her up for a bone marrow transplant when she was fifteen months
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old, so that was that was such a such another interesting mind boggling week
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the week before her bone marrow transplant. So at this point we've been dealing
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with hirshbruns for a year, a year of her vomiting, having bloated,
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backed up belly, extreme pain, and as soon as she gets gut rest,
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not allowed to eat anything. She's only on IV fluids right, so
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if you think about it, this is gut rest and isolation for about you
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know, three months and we start the chemo therapy they use prior to bone
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marriage transplant. So the way our doctor explained it to me, which was
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really great to understand, is skid is like your body's full of weeds and
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the chemo is like round up, get in there and kill all those weeds,
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and then your body is fresh and open for the new stem cells to
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come in and do their job and give a new immune system and it.
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You know, so many people are built to be so fearful of chemo and
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what it can do. Like I remember the discussion saying, like she's got
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no immune system. We're going to give her eight days of chemo and hope
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she survives that, then give her the bone marrow. So that week was
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just like so stressful because you know, like you're you're taking out there completing
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me system. She doesn't have one already. I've seen her go septic and
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almost not survived. Now they're telling me they're going to give her eight days
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of chemo. It was so stressful. Until we started the chemo, she
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never felt better. It was like they it was like literally like a miracle.
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They started the chemo and no, she quit vomiting. She had more
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energy. It was like her body was like finally, like thank you,
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I have all this junk inside, get it out. So that was kind
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of strange. It was still scary though, because the risk came back on.
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You know, they they warned to me, they're like, okay,
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she has a central line. Those have huge risk of getting infected. It's
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a foreign body. Now you're giving her chemo. She's we've stripped her immune
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system completely, and it's like, okay, she needs this line to get
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a bone maw transplant. Well, two days before the bone male transplant,
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it got infected. Her body was like I have nothing to fight this.
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Now you're giving me chemo. Sorry, this foreign body has to go.
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So that was that was a close call. That was the second time she
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went septic and we almost lost her before her bone malew transplant. It was
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a very very very very scary night. And what ended up happening is they
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had to take that line out immediately, give it twenty four hours, and
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put in a new line for the bon Marow transplant. And it was like
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just in the nick of time, right. So that's again another and another
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headache can do without really yeah, very well, a lot of a lot
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of Java. Yes, yes, And I think there will be quite a
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few people that will listen to this, And there's been a fair few people
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who who've contacted me who've gone through not the same journey, but very similar
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journeys on that that sort of. And I guess one of the one of
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the hard parts, really hard parts, is the waiting and the worrying.
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I mean, I guess you know, for people like me, it was
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all right because I was asleep, I didn't worry about it, But my
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parents, I imagine, would would have been up the wall. Were there
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any tips or because I've watched a video, a really good video of yours
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on emotional, emotional and mental health tips on children going through or having a
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children going through hirshbrums or various conditions and diseases, would you happy to share
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any of those from your from your YouTube channel? Yeah, I have,
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I have quite a My poor YouTube gets put on the back burner quite a
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lot now that our TikTok is so massive, But a lot of my YouTube
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videos are from that first two years in hospital with Bella when she was just
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a baby, and I keep them up there like it's hard to keep them
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up because she looks so like we're in hospital. She doesn't you know,
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she's having a hard time. But there's so much in there that I know
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can help other moms and dads living in hospital with with their little ones in
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these conditions or these conditions themselves, and knowing that they can hop over to
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our TikTok or recent youtubes and see Bella thriving and doing so well, they
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can see that difference. I would I I would say in those years,
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I mean, as hard as it is to go back there, and I
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was a completely different person. It was the years that molded me into being
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a medical mom. But my background is education. I've been a teacher,
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you know, since I got out of university, and there was a lot
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of things living in that environment that helped me. It's the main reason I
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started my social media channel. We run Isolation for over two hundred days.
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Living in hospital for over two years straight, my only way to the outside
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world was Facebook, Instagram and now TikTok, and I found that if I
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could be a little bit more vocal about what we were going through in like
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a respectful way, not just I found the more I complained, the worse
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I felt, because living in that environment, I saw other parents with their
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little ones as as horrible as the things we had to go through were.
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I always saw someone else go through something worse. And I think that trained
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my mind to think, Okay, complaining is not helping you. Pick something
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else. Like the screaming, the crying and the stress out typing like,
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it's not helping you, it's not helping anybody else, So pick something else.
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And so then I really leaned on my face, and I leaned on
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other people in the you know, the internet social community. Yeah, I'm
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still like showing my age because I'm like, wait, what do you tell
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this interweb? You know? I found like if I could even if I
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typed like something short or something I needed help with, if I could just
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get over that hump of asking for help, it made a world of difference
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in my life and Bella's life. I found being quiet in the corner,
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being sad about how my life was going, watching all my friends have their
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healthy children and me living in hospital was so mentally and physically challenging. I
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knew that if I didn't train my mind to think positive and speak positive and
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ask for help, that it wasn't going to get better. So that took
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a lot of work, but I knew that's what I needed to do if
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I was going to live in that environment for a long time. And thank
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goodness because it's been ten years now, and I mean it didn't come without,
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you know, seeing my doctor, talking to a mental health nurse and
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making sure I made that happen for myself because I needed the energy to be
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by my daughter's side and help her through. Yeah, for sure, I
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think that's that's incredibly important. It's right what you said, you can.
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It's really really easy to focus on the negatives. Yes, there are,
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you know, with anybody goes through hirsprungs or goes through through any illness,
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there are there are lots of things, lots of hurdles to get over,
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but it is important to focus on the positives. And I guess the there
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are also just through doing some work and some study on this, that there
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are some parts of hirsprungs that are positive. It doesn't seem so certainly at
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the time. But one thing that I've found personally and through other people I've
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spoken to, is the resistance to pain that you end up because you go
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through so many surgeries when you're really really young. I've tended to find that,
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you know, I can be hit with various things and it doesn't hurt,
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and it probably should do. But it's things like that that you kind
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of take and it seems a bit strange in a way, but I think
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that as a positive as opposed to like a negative or it should be careful
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of this or that or the other. So yeah, I think that's really
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really important and it's right what you said with having contact with other people.
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Part of the reason why why I set this up is to contact people like
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yourself, people who can share incredible stories, who can have gone through hirshbruns
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and letting people know that they're not alone. They're definitely not alone, and
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that there will be lots of inspirational stories out there, and yeah, and
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just letting people know really that yes, you have hirshbrungs. Yes this lots
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of things associated with that, but that doesn't necessarily stop you from achieving great
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things. And on that subject, tell me a bit about Bella as a
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person, that she is so smart, and you you made me think back
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to you know, well, I've had a lot of parents worry about how
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the effect of being in hospital will have on their kids. And I A
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positive story that I always mention is with Bella, Like she's outgoing as a
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kid, and you would think the opposite, having the start to life that
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she had living in a hospital. But you know, I think because she
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didn't leave the hospital until she was too two two years old in one week
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is when she left hospital, and so it's all she knew. She was
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born there and she lived there for the first two years of her life,
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and you you would think that, but it's also like her baby years,
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they really do forget that. It's I'm still dealing with the fact that the
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trauma has altered me and I'm grieving my mental health that I had prior to
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that trauma. But I'm so thankful that my child, you know, her
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age, it didn't affect her, and in some ways it had a positive
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effect. If you think about, you know, a new mom who brings
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their baby home and they're so alone at home for the first year of their
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life, like in Canada we get a whole year of maternity leaf and it's
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really quite lonely for a lot of first time moms. Here. I'm a
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first time mom and my baby and we see fifteen to twenty people a day,
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and my daughter hears adult conversations by her bedside all day long because that's
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me and the nurses and the doctors, and so her receptive and expressive vocal
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abilities like to speak and to understand we're in like the ninety six percentile when
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she was eight nine months old. She was saying her first words at ten
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months old and she had about five to ten of them. And I remember
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this speech therapist because I had so many therapies coming in thinking, Okay,
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this family has been in hospital like like six months now, looking for another
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looking to another year because of her bone marrow transplant. And I remember a
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lot of them coming in, physiotherapy, occupational therapy, speech therapy, social
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workers, you know, mental health, and they were all focused on Bella
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and a lot of them would be like, she's doing amazing. She's doing
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better than kids for age mentally cognitively. So that was a really that was
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really a positive light for me and such like a hard dark time as a
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first time mom. And and that's still Bella today, that she is very
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vocal, she's not shy, she's really confident and and I have a lot
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of people tell me they're like, whoahoo, like you need to like that's
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you mom, Like Kyla, you did that, And I often I forget,
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like it was a big worry of mine that with her dwarfism, with
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being in hospital and all the procedures that, you know, having an ask
32:17
to me having a central line, having a G two button. I was
32:22
like, Okay, I want to build her confidence because when she gets out
32:25
of here and is in public and meets friends and goes to school, she's
32:30
got to do that in a whole different light than the average kid. And
32:35
so I really my main focus was, Okay, build her confidence so that
32:39
she'll have the ability to deal with to deal with anything that might, you
32:45
know, really scare the average kid going back into like a public environment.
32:52
So I'm happy to say that that's stuck with her. She is not shy.
32:54
She is still very vocal. She's constantly asking me to tiktoks and sing
33:00
online and sing like on the stage and Dad's and she goes to school and
33:07
she's got she's in fifth grade. She's got sixth graders like three times her
33:12
height, and the lockers beside her and she's just like hey, like it's
33:15
just like not worried, worried, Like, Okay, now do I need
33:21
to teach you what you should be worried about? Like, so, that's
33:25
fantastic, that's absolutely fantastic. Yeah, no, that's absolutely brilliant. So
33:32
it's not not afraid, not worried. You said that she was very much
33:37
into into singing. I've seen some tiktoks and so shows some people he's seeing
33:43
tiktoks and instagram of her singing. Yeah, you said I think she was
33:50
into fashion as well. I think you said, oh yeah, she hops
33:53
around in the arts so much. She's she really loved the last couple of
33:59
years. She loves sewing. Now she's in the pottery. She's always loved
34:04
dance. Dance is like number one, and now singing. She's really like
34:13
discovered her well I shouldn't say discovered. She's just like she wants to be
34:16
more professional about it. She's always loved singing, but now she's like,
34:20
okay, like for Christmas, She's like, I want a professional mic stand.
34:25
She has taking some singing lessons in the past, but we're gonna get
34:29
some more of those going soon. Always into fashion, very much into fashion
34:35
designing, but also wearing fashion. Yeah, well, that's absolutely brilliant.
34:45
Yeah, fantastic. No, that's really really good. This would be sort
34:52
of the end of the first episode. I want to lead in to the
34:57
second episode with the big moment that we'll tell in the next episode. So
35:06
just to give people a flavor of what happened to you and Bella in August
35:12
twenty twenty three before we do a bit more of a deep dive into it,
35:16
what would you say is as a flavor for episode two coming out in
35:22
a couple of weeks. I would say, in that moment, in that
35:27
time, I it was life changing in a sense that everything on my mind
35:36
before that day was me fighting against the thoughts of how I'm going to manage
35:42
the death of my nine year old child, and that day changed everything and
35:47
I don't have to think that way any longer. Fantastic. Well, thank
35:53
you very much, and we shall see you in the next episode. Thank
35:59
you so much. Thank you for listening to the podcast. Find us on
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Instagram Tom's Underscore, Hirshbrung's Underscore podcast. Listen to previous episodes on Spotify by
36:12
searching Tom's Hirshbrung's Podcast.