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Episode 15 - With Melissa Jones (HD UK Facebook group founder) · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshfrung's podcasts, where our provide a look into the
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remarkable experiences the most aspiring people around Hirshprng's disease and swore we did think and
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having a son O fine yep ye, Hello and welcome to Tom's Hirshfrung's Podcast,
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episode number fifteen. My guest this week is Melissa Jones. Melissa runs
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Hirshbrong's Disease UK's Facebook page also has a daughter, Mia with Hirshbrung's disease as
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well, and she's very kindly come on to tell MIA's story and her story
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to do with herschworm's disease. We will also discuss the Facebook page as to
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why and how it was created and where it's going so far and possibly where
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it's going in the future. Melissa, welcome to Welcome to the podcast.
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Hello, thank you. So we're going to start with your daughter Mire's story.
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So Mia was diagnosed after a sort of a couple of days and she's
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now ten is that correct, yes, eleven in July. Eleven in July,
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so we'll start with me A's story. So whenever you're ready you can
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begin. Great, Thank you. So, starting from the beginning, Mia
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was born two weeks early via please Plan C section. She weighed a healthy
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seven pounds four ounts it and we had no idea that anything was wrong.
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Then when we were in the recovery ward after the c section, Mia was
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just putting it into me in a cute, quiet little baby, making a
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little cooing noise. And then the nurse came over and asked me how long
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she's been making the noise for, and she told me that sounds It does
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sound very cute, but it's medically known as a grunting and could indicate that
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something's not quite right, but not to worry, as it doesn't necessarily mean
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that there is anything wrong, or if there is, doesn't mean anything serious.
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So then as the day went on, Mia was just sleeping and be
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in the quietest newborn little baby ever, and I keep trying to feed her
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and she was just taking a little bit. And then the next morning,
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I'm after a full night sleep, which is amazing after a new poll baby,
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I was still trying to feed mea and and then she was sick and
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it was bright green and so that sent off alarm bells with the doctors and
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she still also hadn't steal pooded, so she was moved out to the special
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baby care unit where they took blood test and X ray, feeding tubeing,
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and put into a little incubator. And then so the doctors came to me
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with the results of the x ray and they could see that something wasn't quite
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right with her bells, and I thought it could be one of three options.
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So one being just a blockage, something simple, you know, they
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could clear the blockage and all be fine. Two could be Hershbrung's disease,
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which is where a part of the bell, all the whole bell depends on
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how much affected, doesn't have any ganglion vowels present, and these are the
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cells which make the bow contract, essentially making making you open your bows.
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All three, the bow just hasn't grown properly and isn't attached to the rectim
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at all. So after some more investigations and tests that we found it was
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how she brings disease. And this was done by taking a biopathy of the
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lining of the bowels, so when they could see that there were no ganglion
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cells present, yes, So from that we were shown how to perform bow
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wash out which is what would help me to open her bowels. Who had
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done these twice a day until she was six weeks They will shout, we
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just got used along to. It's a catheter to and you just pop it
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in the in the bowl and squirt some water in so it's like an irrigation
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and it just helps wash out the bells. But yes, she's six weeks
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old. She went in for her pull through procedure where they would remove parts
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of the affected bell and prosidure went well. It did take a lot longer
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than I thought it would. I was warned that it could take hours and
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neared to almost eight hours. But this is because they don't actually know how
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much of the bowel is affected, so they will take small amount the time,
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send it off the lab and make sure the part of the bow that
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they're connecting that has ganglion cells showing. So and this was done quite a
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few times. They ended up removing two thirds of me as small in testing
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and that that was all going well. Recovering in the hospital after three days.
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The surgeon was happy was how Mia was recovering, and she said she
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was happy for her to be discharged the following day, and so that night.
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I didn't have the best experience with the nurse was caring for Mia and
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had to go out a couple of times with Mia crying in pain to ask
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for her to bring some hankillers, which Mia was overdue as you eventually did.
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And that was that. I didn't see her against the rest of the
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night until she came in the morning and I'd save some nappies like I was
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instructed to do by the surgeon so that they could weigh them. This was
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to try and judge if she's been weien, just to try and get an
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idea she's been weiring, but she just threw them in the bin. And
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then the surgeons came around to dis charge Mia and she projectile vomited right in
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front of them, almost got the doctor. So this then I then explained
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to them that the nurse hadn't been in all week. Mia was taking renitted
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in, which is a medicine for reflat so after checking her records, they
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did see that she had missed two doses of this medicine. So thought,
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okay, that's obviously why she's now being sick. We'll just give her that
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and still happy discharged Mia that day got home. Still, Mia was still
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being sick after feeds and even when we were giving her medicine, so did
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brush her back into any of the early was the next morning where she was
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sent straight for an x ray. I didn't see her after the x ray.
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They sent her from there straight to theater for a lookrotomy whether look,
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but the consultant came and explained to me that the X ray was showing just
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black, just a big black moth. That's all they could see. So
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they were thinking it was something to do with the bowels. Sometimes they get
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complications and there could be a loop in the bowel and then there's a blockage.
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But it actually turned out to be me as bladder it's gone into retention,
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which is a risk from the was explained that could happen after following that,
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which is why it was waved enough you so we I was trained to
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do intermicent catheters on Maya maybe two hours until the bladders started working properly,
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and then they went down to four hours. And Mia now still has intermittent
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casters. She does six a day and she is starting to learn perhaps sitting
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in herself so because of the bladder stretching so much, he got to four
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times the size it should have been close to busting. I think it kind
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of loses the nerve, so her bladder is just still not working properly from
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it, which is why she still does them today. But going back to
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plash Bron's disease, Mia suffered quite a few time with a few bouts of
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entericlitis infection, which is Hashbrun's disease related. It's it can be quite a
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serious disease. If it's not treated really quickly, it could become fatal.
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So it's bacteria in the bows. It just attacks and tacks about. I
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don't know why it happens, but they just know it happens to people with
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Hashbun's disease, and they know how to treat it. But it's one of
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the things with the rare disease that they don't look into it too much,
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do they, as long as they know how to treat things. Yeah,
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yeah, it did suffer with this quite a few times in a couple of
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years by life, but it's not too bad as she gets older. He
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has had it and she's older, but it's not as can't get as serious
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as quickly as when a small baby yeah, said I'm sorry, whilst sorry
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just one one question. I just had the the potomy and I said that
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right, they're a popular across. Is that just where they make sort of
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small incisions in the stommach. Yeah, so just above her belly butter,
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and she's now got a scar. It's a slice. Yeah, yeah,
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thank you so. And actually because she was such a small baby, now
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as she's growing where it's garred, she does have lights, so they might
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have to sort of recut it so it's heels as she Yeah, and she
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was so tiny and it's kind of trying to grow with her but getting stuck.
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God, yes, sorry, So body training time came and then that
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became clear that Mia had no control over her vowels. And then from looking
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at sort of previous ex thros that she'd had and then doing another one,
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it seems like Mia did pooh, but it was always very loose, so
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it actually they worked out that that's more likely to be an overflow still,
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so where she's actually constipated, so he vow's still not sort of working properly,
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so she's always getting backed up and then which can happen in her broth.
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I've had some people have the pultry operation and that were you know,
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straight away and everything's okay. But a lot of times there are complications like
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this and you just need a bit of help. Some people would need,
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you know, a stoma or other things. You know. People think,
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well, you've had a bow removed, your fit, it's cured. That
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not always no, And yeah, she still does it to this day.
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She perhaps still have a bow wash out, but it's it just keeps the
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bow clean and clear. And and she now just that's you know, how
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she opens her boughs. It's once a day and that's it. She's also
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learning how to do that, my sou Yeah, thanks, yeah, well,
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thank you, thank you ever so much for sharing. So you say
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that that Mia does the washouts sort of one once a day and apart from
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that sort of happy healthy, gets on with everything. And what happened as
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we do have the odd hiccup where she sort of has going through she could
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be getting backed up, so sometimes to do a couple of washouts, we
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learn how she's getting older, we are learning and things are getting better.
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She knows a tummy doesn't quite feel she still she says, it still feels
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full. So that we'll go, we'll do a couple of washouts. It
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is for hushburls sufferers. Suctually, you'll agree. You just learn how to
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mention things as you get older. And she's she knows now the difference of
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if something she eats is hurting her tummy, we'll avoid that, which I
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also think is quite comment with Hashbeul's disease. I've actually sent me a for
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an intolerance test and it showed that she is highly intolerant to dairy. Hm.
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That just makes really and she gets a bad toming like any intolerance people
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just but it also messes up the bowels. Yeah, we get away from
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dairy now she knows what chocolate, the real chocolate tastes like, and keep
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her with it forever. But yeah, she knows her limit. Yeah,
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I guess as as you. As you get older and have hershprungs, there
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are people who are see, you're a lot younger than me, you have
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hersprungs, a lot older than me that have hershbrungs who Yeah, you just
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sort of figure it out as you go. I'm always loath to give yeah,
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and I never give medical advice or anything like that because I'm not a
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doctor. I'm not a nurse. I don't know what I'm talking about,
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and when it comes to beticit, but you do tend to to figure it
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out, well, figure out right, Okay, this doesn't work, or
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this does work. Okay, we'll try this. It works and maybe then
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at some point it doesn't so or I will change it, and this that
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and the other, and that's. Yeah, there is there's a lot more
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medical advice sort of out there than there was probably ten years ago when Meir
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was diagnosed, and certainly thirty years ago when I was diagnosed, but it
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is still very much, as you've alluded to, trial and error. Yes,
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yeah, definitely. Yeah. So from from this point obviously, one
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of the one of the main main things I look for in the podcast is
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some really inspirational stories. And that's why I really wanted you on the podcast,
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because you then from MEA's condition, then set up a Facebook page or
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to do with Hirshbrong's disease or specifically Hirshbrung's disease for people in the UK people
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like me, which again something I know I've mentioned this on previous episodes,
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but thirty years ago, I know Facebook didn't exist and whatever, But something
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that certainly me and my parents would have been so so glad for, because
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I never knew anyone else with Hirschbrungs until I was twenty five, and until
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with Hirschbrucks. So what was the Obviously the inspiration we can probably hazard a
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guess that it was. It was Mia behind the the inspiration behind the Facebook
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page. But why did you think right this, this is what I want
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to do. I want to set up this Facebook page and then get people
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together in a sort of community. Yeah, I just because I felt so
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alone and I didn't have anyone to talk to you and I didn't and I
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could research on Facebook and find American based ones, and it's very difficult because
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they use different medicines, different bum creams even so when they have the terrible
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nappy rash and different procedures, and they they don't believe in the bow or
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shouts anything. They just different management. After so, I thought, oh,
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there must be more people out there in the UK like me, parents
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have hersh struggling. So I just set one up and I did you get
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members pretty much straight away? People were requesting to be members, and it's
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great to be able to give advice to people or just say to someone,
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I know what you're going through, and I think it's nice two for yourself
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to go and speak just say something because I know you'll get it sort of
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thing. So yeah, yeah, it see fantastic. I totally get that.
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I've to speak to my parents about about hirsh Brun's. One thing that
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they've said is that they did feel very alone. Yes, the hospitals were
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great and fantastic with medical information and you know, X is y and whatever
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whatever, but actual, okay, what's it like to live with you know,
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what, what what does it look like on a daily basis? What
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what you know? What wash outs and medical stuff, you know, all
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of that stuff very very helpful with actually what are people's experiences? And we
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didn't you know, didn't have those experiences. But thanks to people like yourself
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and for setting up Facebook pages and having well you're close to about two thousand
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people take members. Just the under of people sharing their experiences. You people,
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I imagine, very very grateful and something I just wish would have happened
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thirty years ago. It would have been would have been really really helpful.
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But the fact that's going on now is is fantastic and kudos to you for
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that, because I I think it's I've read obviously a few things and people
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just asking you know, general advice. You know, it's you know,
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not sort of big medical questions of what how do I do this and whatever,
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but just sort of what's this like to leave with? What? You
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know? What's how? And two? Yeah, and just things like oh,
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what do you use as a distraction whilst you're performing babies wash out?
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And you know you wouldn't get that from a doctor. No, no,
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you don't go and use you know, an iPad or whatever it might be.
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But yeah, no, and just just sharing little bits of info and
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going right, oh, actually I haven't tried this or that or you know,
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the like the different distractions. I think it's Yeah, I think it's
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absolutely fantastic. And on that point, obviously we talked about the size of
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the community. So of eighteen eighteen hundred or so, how pleased are you
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with the community response? Was it more than you thought? Would you thought
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you'd get like a few hundred or several thousand? I can't so I wasn't
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thinking about that when I set up the page, but as the time went
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on, I thought, oh my gosh, even when it got into the
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hundred, I thought, wow, this has got a good response. But
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obviously, like I thought, there must be so many people out there,
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and it's not just there are people on the page that don't live in the
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UK. I'm not going to not approve a member just because they don't live
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in the UK, but very obviously the terms of and the medicine and everything
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sall UK related. But yeah, I'm overwhelmed. And I still approving member
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requests daily, So yeah, I think it's just going to continue to grow,
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which is great because that means we've got support out there for parents and
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people with version. Yeah, that's fantastic. I like the fact there's no
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border controls on the on the on the Facebook page, you can you can
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accept anybody, don't have to be a resident. No, I think I
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think it's fantastic. As I said before, like I have a flip through
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it and see things that you know, and I'm again one of the reasons
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I started this podcast was to learn more about Hirschbrum's and I've learned a lot
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from you and and your page, and I'm yeah, I still having had
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it for thirty years, I'm still learning and I'm still thinking, right,
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what's here and what's there? And how are they treating this and how's it
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different to this long ago. A couple more questions on the page, really,
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are there any hearts that or any experiences that happened because of the page
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on the Facebook page that particularly stand out for you? Yes? So obviously
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I comment on people's posts and like to help out. But I did,
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in particular meet this lovely family, a lovely woman called Shannel who messaged me
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her baby. I think it was about twenty nineteen, so we sort of
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lossomed a friendship. She came down to Oxford and met up and she was
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really really thankful that I offered the support and could sort of help her.
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It just this was before her little boy had all through operation. You know,
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he's a baby. So back to what I said, when when you've
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at that days, you you just feel so alone. So yeah, meeting
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meeting people new friends nice, knowing that you can offer how that let's go
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into relax them a bit more about things touch Yeah, No, brilliant And
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just finally on the page itself, you said that you were really surprised at
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how it's taken off and how many people are there. What do you see
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as the future or the page? How how not necessarily how big do you
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think it can grow? Maybe how big do you think it can grow?
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But where do you think the pay or what will it look like in the
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future. Oh, I don't know. I just say that just continue as
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it is. Really, I don't think I could hope for more. It's
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somewhere for people to turn to when they and they don't have anyone else.
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You know, you know that you'll find someone. I mean, Hirshbring's disease.
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It's so broad that not everyone's going to have the same experience, but
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having this platform to go to, you are likely to find someone that has
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been through that or can offer you advice because not every SNK that people post
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on the page I can give advice on because it's a different journey. But
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yeah, hopefully that it's just continued. Yeah, well, people Lovely continues
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to be a heartwarming, lovely, lovely of little people. It's just yeah,
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fantastic. And I know we talked a lot about the Facebook page,
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and I'm well aware that I haven't even mentioned what it's called. So well,
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here can people find the Facebook page and find you? Yes, it
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called Hirshbron's Disease Family Support to UK and just go on your Facebook and type
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in the search. Yeah, fantastic, Well on behalf of the podcast.
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I'd love to thank you for your time and thank you for sharing me his
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experience, and also for setting up the Facebook page because I've recently found it
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and I thought by hsbrog podcast in the UK, You're absolutely perfect for this.
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So I just want to say thank you so so much for coming on,
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sharing the story, being a great advocate for Hirshbron's disease and continue to
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do it, continue doing the fantastic work that you do. Oh it's my
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pleasure. Thank you for contacting me. Great to talk from your show lovely.
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Thank you very much, Gay, thank you. Thank you for listening
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to the podcast. Find us on Instagram at Tom's Underscore Hirshbrun's Underscore Podcast.
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