Latest / Tom's Hirschsprung's Podcast / Episode 8 - Part 1 of my interview with Shellie Warner @discoveringadonis @_shellend

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Episode 8 - Part 1 of my interview with Shellie Warner @discoveringadonis @_shellend · 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. Hello and
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  welcome to episode eight of Tom's Hirsprong Hirshprung's Podcast. This week, I have
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  another very special guest. I have Shelley Warner with me. Shelley is here
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  to talk about her son Donnie. We are going to talk about his Hirshprung's
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  diagnosis along with Down syndrome diagnosis in episode one. This will be a two
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  part episode, so episode one we will talk initially about diagnosis, feelings and
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  thoughts around that, and then episode two we will move on into the fantastic
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  charity work that Shelley's been doing and some very exciting projects that she has coming
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  up. Shelley, Welcome to the podcast. Hi, thank you for having
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  me, Thank you for coming. I'll go straight into the first diagnosis and
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  I was wondering if you'd just like to share your story sort of from the
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  beginning at twenty one weeks and the initial initial diagnosis of Donnie's Down syndrome and
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  then sort of take it from there. Yeah, So I actually wasn't expecting
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  a Donnis who was a blessing and a disguise and a surprise and all of
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  the above. But when we initially got his diagnosis of dancing drome, everything
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  just fell into place from there. Really, we weren't expecting a baby like
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  but the fact that we got a honest was just, like I say,
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  just a blessing. It's exactly what we needed. We initially had a low
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  risk on our fetal testing for Down syndrome, and then at twenty one weeks
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  they started measuring his legs and basically came back that he had short femurs and
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  from there they said it could either be Down syndrome or it could be dwarfism.
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  So then we had scans every single three weeks and then dopplers every week,
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  and it was a very intrusive process. To be honest, I was
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  never alone in my pregnancy. Myself and my husband had a lot of decisions
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  to make, and it was really scary having the questions that the doctors were
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  asking us. They did ask us if we wanted to terminate. They asked
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  us about three times because of his dance syndrome diagnosis. And we straight away
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  were like, no, Like, his name is Adonis, we have personalized
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  his nursery. He's kicking me as you're as you're asking me this question,
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  saying no, no, no. So it was very it was very intrusive
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  and it was very scary, but we knew that God had chosen us to
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  be his parents because we could handle it. I during my pregnancy, when
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  we were having all of our scans and everything every three weeks, they kept
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  saying that my levels of amniotic fluid were rising quite quickly and they shouldn't be
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  so from there they basically said, we think he might have a bowel obstruction
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  straight off the bat, but they couldn't see anything. So when he was
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  born, I actually tried to have a natural birth, which in hindsight wasn't
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  the best idea on my part, but with my first baby, I wanted
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  the stereotypical water birth and everything wanted it to be completely natural and earth momish,
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  so we ended up trying for a natural birth. It didn't work.
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  His heart rate was dropping quite significantly, he wasn't taking any nutrients in the
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  womb anymore, and his down syndrome was the main factor in that. We
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  knew that he had a small hole in his heart. He had an ASD.
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  It has closed, but it had definitely had an effect in our pregnancy
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  and in our decision making. So he was born anyway by emergency c section
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  because his heart rate dropped and they rushed me into into surgery and we were
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  straight into the NICUU to get oxygen. He had a sea pat on his
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  shirt, nose, and mouth to help him breathe, and they did say
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  initially he's definitely got dancing drome. We did have a obviously low risk and
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  then ninety nine point nine percent chance of yes, but that zero point one
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  percent, we were kind of like, oh, maybe, but yeah,
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  it was very obvious when he knew when he was born that he had dance
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  in drome. And he looked adorable. He was so cute, cute as
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  a button, and yeah, just just happy the baby. We went into
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  the nick QUEU, which is the neonatal intensive care unit, and we were
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  there for a month in total, but we were moved around hospitals quite a
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  bit. So it was actually one of the nurses initially when he was two
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  days old, that noticed he hadn't passed any maconium. He hadn't been opening
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  his bowls at all, and she basically said to the surgeons, look,
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  I think he might have that bowel obstruction, and I think we should we
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  should definitely look for it and look for an underlying cause. And we'd never
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  even heard of her sprungs at this point. It was so so rare that
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  we hadn't. I didn't know what it was. I had no idea what
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  to expect, but nonetheless we went and we moved into a different hospital that
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  was specialized in pediatric surgery because we knew that he'd have to get this obstruction
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  removed. So when we arrived, I actually wasn't allowed to go with him
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  in the ambulance, which was quite distressing anyway, because I just had my
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  C sections. So he was whisked away to a different hospital and I was
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  like, what is going on? The start of my journey has been ruined?
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  Like what is happening? And they ended up doing some biopsies. They
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  took eleven samples of his bowl in total across three different times that he needed
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  a biopsy because everything kept coming back inconclusive, so they weren't actually able to
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  distinguish and like one hundred percent, say yes, it's HIRSHBRNX until the final
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  sample was taken, and that was hard because he kept having to go through
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  these biopsies. Aweight, he was only five pound six so he was not
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  he was not big at all, and they were constantly doing tests and all
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  sorts and he must have been so scared. I mean I was terrified,
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  really, But they took the biopsies and came back first BRONX and we were
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  like, wow, okay, what does that mean? Literally, I have
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  no idea, I've never heard of it. I was just getting over the
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  down syndrome diagnosis and then this has come forward and I was like, wow,
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  what does that mean for us? He ended up having to have wash
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  outs, so I had to do bowel wash out with him three times a
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  day for eight months, which was quite difficult with the Wrigley baby newborn.
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  We were in the NICKU doing them initially, and then when we got discharged,
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  it was a month later and we were doing them at home and it
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  was just so I think for us, being the positive people that we are,
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  it was difficult, but we never let on that it was difficult,
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  and the Stonema care team who were supporting us in that They were really impressed
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  by the fact that I knew the pattern of his bowels quite quickly. I
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  picked everything up and they were still to this day are like, I can't
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  believe you're not medical, but I kind of just did all my research,
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  really got to know his bowels, which sounds really strange, but when you're
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  inserting a catheter, you just know where everything is and where to go and
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  the angle to go in at. And he still has to have those to
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  this day. The aim initially was to get his weight up and packing the
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  calories. We have a dietitian to help us with that and they are amazing,
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  so that he would get big enough to have a pull through surgery.
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  They still didn't know what kind of hirsch brungs he had. At this point,
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  he was eight months old. They were putting off the surgery a lot
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  because he was still having refluxed. He never really ate more than four ounces
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  of milk without burrowing up. There was something wrong with his with his his
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  bowels, and and they thought that they'd got rid of this obstruction, but
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  they actually hadn't. It was still there and it had caused him to have
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  entricolitis quite severely. So we went back into hospital. We were in and
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  out of hospital for months and months and months. He'd had disinfection, constantly
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  on antibiotics, and we just had no idea where the end was, you
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  know, like we couldn't see the end. We couldn't see how this was
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  going to get better. They always say that the first year is the worst
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  year, but this was really tough. So we went in for our ball
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  room expecting all to be okay. They still had no plan. They just
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  went in blind, to be honest. It was a very strange way of
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  doing it, but it worked because we just couldn't figure out where the part
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  was because we didn't know whether it was short segment or long at that time,
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  and we didn't know how much of his bowel he was going to lose.
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  It turned out that during the surgery it was actually twelve hours long.
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  The actual initial pull through surgery. They couldn't do the pull three. They
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  took biopsies from all around his large intestine and his small intestine, and he
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  came back that he had total colonic Hirshbrungs, which was quite a rare as
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  far as I understand anyway, a rare variation of hirshbrungs. Most of them
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  are short segment or long segment, and he struggled to be able to do
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  the pull through with the surgeons. So we ended up having an iliostomy formed
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  and he still rocks that to this day, and he still does have his
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  large intestine, but he has not got use of it. So the whole
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  of his large intestine and fifteen centimeters of his small intestine was without nerves and
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  unusable. So I'm not surprised that our washouts had to be three times a
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  day for eight months and that he was constantly in pain with his food because
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  he literally couldn't process anything and he was really really struggling. So yeah,
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  that's where we're at at the moment. He's got ez iliostomy and he's eating
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  three meals a day, two snacks, milk, eat me out of house
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  at home, really, but he is so much better now, and it's
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  just such a long journey. We finally got to the end. Really fantastic,
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  Thank you very much. Just picking up on that about food and appetite,
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  How has his appetite changed over time? I mean with the down syndrome
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  anyway, there's a lot of behavioral characteristics that need to be taken into account.
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  But as far as his hirshbrungs is concerned, it did have an effect
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  on his appetite. For a long time, he really had an unhealthy relationship
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  with food. We were trying to wean him as normally he would at six
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  months old, and he was just having none of it. He was so
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  full and so in pain with his hirshbruings, and we just couldn't tell because
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  it had been like that since the day he was born. So it was
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  really hard to know what his normal was. As I was saying before,
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  he really didn't drink more than four ounces. I was breastfeeding at the time,
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  and I had a massive oversupply. It was hard to establish breastfeeding anyway
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  with the down syndrome because he had a short gag reflex and he was really
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  struggling with his swallowing. But when we got that out of the way,
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  it just seemed like one hundred and one problem all at once, and like
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  I say, it was just never ending. But over time he got used
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  to the textures and he got used to the volume. Now he eats more
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  than me. It's crazy because he has his iliostomy all the food that he
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  eats just comes straight back out again, and we have to try and slow
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  his beating down and slow his bowels down with different medications and a high fiber
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  diet and everything, but he really does eat so much. He's a little
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  gannet fantastic. It only really changed in the last few months. That's a
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  really important point. I want to pick up on something you said before where
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  you said, there there's one hundred and one problems, and suddenly you overcome
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  one, and then there's another, and then you overcome one, and then
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  there's another or another one comes back, or whatever it might be. And
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  sometimes it can possibly feel that you can't quite see the light at the end
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  of the tunnel. Yeah, having spoken to quite a few parents and people
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  with hirshbrumps about that, is there any sort of advice that you would that
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  you've taken, or any thoughts that you think when you couldn't quite see the
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  lights at the end of the tunnel that you would possibly give to other people.
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  I would probably say, get yourself a positive husband, because I needed
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  that positivity of my life. And when I was saying to everyone like,
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  oh, I'm really frustrated I can't see the end of this, it's really
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  hard. I can't do it. I can't do free washouts every day.
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  It's controlling our lives. I mean I had to leave my job because of
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  how much care he was actually needing, and my partner worked tonight, so
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  he was sleeping all day. So I was pretty much on my own at
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  the time, and it was really hard. But because my partner is so
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  positive, he was like, he might be thenero point one percent, don't
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  worry, it's fine. We're going to get through this and we're gonna we're
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  gonna do it, and we're a good team and God believes in us.
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  And he was very much the the spurring factor and the thing that just kept
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  me going. Also, Donnie is such a trooper, like you just don't
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  know. These these kids with Hershbrung's and with down syndrome, they just they
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  just get on with it. And I was just thinking to myself or every
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  day, like if a Donnis can do this, then I need to be
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  able to do this too. He is so tiny and has no life experience
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  and he's just smiling every day. He wakes up happy. And if that's
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  the case, I'm doing something right. And there is there isn't out.
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  The first year is the worst year, which is what another mom told me,
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  and it really is true. But it all works out in the end,
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  and you've just got to try and have some faith. Definitely, no,
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  definitely fantastic. And if if people do want to see a lot of
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  positivity, there's a lot of positivity on your your Instagram page as well.
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  Where can people find that Instagram page? So we are at discovering a Dollis
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  Loughly and there's a there's an awful lot of positivity there, a lot of
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  really interesting medical info. But but mainly from from from what I got from
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  that was that you, your husband and a Donnets are just such positive people.
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  Yeah, we try to be, and I think that's that's if anybody
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  wants just some really uplifting if anybody's going through similar situations, and or even
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  not, if you just want some uplifting content, there's some some great stuff
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  on there. I've seen You've put a few pictures and videos of Donnie on
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  there about he's very much into his music, is that right? And yeah,
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  he loves music. He has a little piano in his playpen that he's
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  just going at every time. He actually got out of hospital after his twelve
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  hour surgery and came back and was straight on the piano on his tummy,
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  rolling around like nothing had happened. And I was like, what is going
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  on? If an adult had a twelve hour surgery on their stomach, they'd
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  be in bed for weeks, they'd be properly milking it. But he was
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  rolling around the playpen straight out of hospital, laughing like nothing had happened,
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  and he hadn't lost all of his bottle. He had no idea what had
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  gone on. But he's just such a positive soul and he really gets that
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  from my husband. I think my pregnancy and the whole journey that we've had
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  has just been completely like it's like a it's like a film, it's like
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  music. It really is just so positive and it has leaps and bounds,
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  but we got through it. And I think if I can help any other
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  like any other parents going through the similar situation than I was, then I
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  would have done something right on this earth. So yeah, if if anyone
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  is in need of some advice, I'm always always open. I'm constantly on
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  the Facebook groups like giving advice where I can and trying to help people and
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  and same on my Instagram as well, and we do regular Q and a's
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  on there, so yeah, if you need some help, then just message.
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  I mean, it was actually an another mum who I got in contact
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  when Donnie was born, who had a son with Hirshprungs disease and Down syndrome.
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  And I am forever thankful for the advice that she gave me, and
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  that was just through Instagram. I've never actually met this mum, but she
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  gave us a lot of advice and her son is thriving. I think he's
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  seven now, and he really is just such a positive person that I really
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  fed into that and decided to do something similar with the with and honest.
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  So yeah, that's why we originally started our Instagram page. And I'm so
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  thanks to her. Yeah, definitely definitely, And I know, just sort
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  of personally that I know my diagnosis was about thirty years ago, and my
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  mom would have really appreciated, she said to me before that she would have
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  really appreciated, you know, Instagram being around thirty years ago, but it
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  was Facebook or Twitter or any kind of social media, and you just sort
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  of had to I didn't know anybody growing up. You know who had hirshprunks
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  disease. You know, I was just the only person who had it.
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  So to make contact with yourself and with several other people around the world who
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  got hers rungs or who've had experience of Hirschbrung's has been has been fantastic.
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  And just lastly, in this episode, I just want to you highlight how
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  important and how great the nurses have been all the hospitals. How how have
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  they been obviously looked after you wonderfully, but in particular what have they done
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  for you and Adonis. I mean, it was a nurse that originally noticed
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  his tommy distension at two days old. So that was really the start of
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  our whole journey, was because a nurse was was noticing that unusual factor and
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  I didn't notice it. His dad didn't notice it. I just thought it
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  was his normal. The doctors that came round and did his his original assessments
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  didn't notice it. They did a whole like head to toe test on him,
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  and nobody noticed that his tommy was descended. Apart from this, this
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  nurse on the night shift, who was probably so tired and so caffeinated that
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  that she just randomly came across him and that was really the start of it.
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  But because of her referral and her confidence to speak up and say,
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  look, this doesn't look right, let me get a surgeon, that's the
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  reason why it was caught so quickly and we were able to be transferred to
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  the specialist hospital and have the amazing, amazing surgeons that we do have at
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  Queen's Medical Center in Nottingham, because I mean we actually lived down the road
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  from there now because we need that support so often that we moved so so
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  close to it so that it was always just on out door step and we
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  could always have the help. I mean, I probably call the stoneA nurses
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  probably twice a week, three times a week, just for some advice and
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  support, and they've really become part of our journey, and the fact that
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  it's the same team I think really helps us as well. They are just
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  so friendly and so nice and I've been sort of only easy about asking so
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  many questions before, but they've reassured me at every single term point that no
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  question is a bad question, no question should be kept in and I should
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  really feel like I can come to them with anything, And I really do
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  feel like that so I'm one hundred percent on board and have been nominating them
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  for different awards and things as well. I've been going all above and beyond
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  to make sure that they get the recognition that they need. And we're just
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  so thankful. Thank you, thank you, yes, no, I thank
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  you so much for sharing your story. And that's an excellent lead in This
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  is the end of part one. It's an excellent leading to join us in
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  part two when we talk about awards, we talk about charity work, and
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  we talk about some really exciting activities I'll call them activities that you're going to
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  do very shortly. So Shelley, thank you very much for part one and
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  we see part two. Okay, thank you for listening to the podcast.
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