Ever wondered how parents navigate the unfamiliar terrain of rare conditions in their children? Laura Wood, a seasoned service manager for a Social Work Service, opens up about her personal journey of parenting a child with achondroplasia. From the shock of the diagnosis through an emergency scan to the challenges of accessing appropriate healthcare, Laura's story is a raw narrative of resilience and determination.
Touching on societal perceptions of disabilities, Laura and Adam unearth some uncomfortable truths about negative stereotypes and the urgent need for a paradigm shift. The discussion extends to her experience of establishing a strong support system that equipped her with vital resources and data to comprehend her daughter's condition better. This episode also takes you through the emotional highs and lows of raising a child with dwarfism and the crucial role of regular scans in monitoring growth.
The conversation focuses on the necessity of education and awareness in managing rare conditions along with the shortcomings of healthcare systems. Laura's inspiring initiative of setting up soft play events and other resources for parents and children dealing with similar conditions is another highlight. Laura underscores the importance of empathy and diversity in our society, and how these values ensure that we cater to the needs of everyone, especially those living with rare conditions. Stay tuned to hear about our plans to collaborate in October for furthering support for individuals living with rare conditions.
Follow us on Twitter
@UoWFEHW
@DIIverseHub
@VascoAdam
Ever wondered how parents navigate the unfamiliar terrain of rare conditions in their children? Laura Wood, a seasoned service manager for a Social Work Service, opens up about her personal journey of parenting a child with achondroplasia. From the shock of the diagnosis through an emergency scan to the challenges of accessing appropriate healthcare, Laura's story is a raw narrative of resilience and determination.
Touching on societal perceptions of disabilities, Laura and Adam unearth some uncomfortable truths about negative stereotypes and the urgent need for a paradigm shift. The discussion extends to her experience of establishing a strong support system that equipped her with vital resources and data to comprehend her daughter's condition better. This episode also takes you through the emotional highs and lows of raising a child with dwarfism and the crucial role of regular scans in monitoring growth.
The conversation focuses on the necessity of education and awareness in managing rare conditions along with the shortcomings of healthcare systems. Laura's inspiring initiative of setting up soft play events and other resources for parents and children dealing with similar conditions is another highlight. Laura underscores the importance of empathy and diversity in our society, and how these values ensure that we cater to the needs of everyone, especially those living with rare conditions. Stay tuned to hear about our plans to collaborate in October for furthering support for individuals living with rare conditions.
Follow us on Twitter
@UoWFEHW
@DIIverseHub
@VascoAdam
We are recording this podcast at the home of Wolverhampton University's multimedia journalism degree in the Alan Turing building on City Campus. The radio studio we are sitting in is kitted out to the same standards as places like BBC Radio 4 and 5 Live. It was installed alongside two studios as part of the new Wolverhampton Screen School. If you want to pop in for a guided tour, to discuss booking the studios or to chat about the journalism undergraduate degree, just email the course leader, gareth Owen. His address is gowin3.wlvacuk.
Speaker 2:Hello and welcome to another episode of the Diverse podcast. Today I'm delighted to be joined in the studio by Laura Wood. Hello, laura, how are you?
Speaker 3:I'm good, thank you.
Speaker 2:Oh, brilliant, okay, and, as always, we ask our guests to introduce themselves, if you don't mind.
Speaker 3:So I'm Laura Wood, so in my day role I'm a service manager for a social work service in Wolverhampton, and then, outside of work, I am mother to Ella, who is a little girl with a chondroplasia, which is a common form of dwarfism.
Speaker 2:Okay, so, first and foremost, well done for doing an amazing job, because it's such an important area and one of the areas that we represent within the faculty. That's for which you work with the, with Wolverhampton City Council, to do that.
Speaker 3:Yeah, we work with Wolverhampton City Council and work with children in care and leave in care.
Speaker 2:Okay. So yeah, an amazing job, a really important one. And then you said obviously we often have different hats, different identities, and another one being the moment I first came across you, when you came in and gave a really informative, inspiring and just a great talk to us as part of a disability history month for staff, and straight after that I wanted to get in touch and see if we could get you in to share that story on the podcast. So, if it's okay with you, would you like to give us a bit more detail around your second role outside of work?
Speaker 3:Okay, so I've actually got two birth children and Ella's my second child. So when I was around about 28 weeks pregnant, I had a midwife appointment and within that appointment she felt that I was measuring big on my stomach. So she measured me and I was. So we ended up going for an emergency scan at the hospital to because we all assumed that I'd got a large baby within that scan. And the skinographer very quickly changed her demeanour and kept walking in and out the room and told me that my unborn child had shortened arms and legs, and she wasn't quite sure what that meant at that point. So she said I'd need another scan with a consultant, but unfortunately they wouldn't be available for a week. So that was quite a daunting time and from the comments that she made in that appointment, I think that she probably thought our baby had Down syndrome.
Speaker 3:Right, okay so that evening I went away, googled all the things that you shouldn't do and two main conditions came up. So one was Down syndrome and the other one was a chondraprasia. And the conformed dwarfism was said earlier and to be honest, I just presumed it wouldn't be that, because I'd never actually met anybody with dwarfism and I'd only seen it on the TV. So I thought it was very, very rare and I also just had no concept that average height people could have a child with dwarfism. So that's kind of where our story began.
Speaker 2:Yeah, and so this is why it's such a powerful story. I think so, because all of those different things number one that it's yeah, I think we'll come around to this in a little bit, but I know when you came in as Disability History Month and Julian had been arranged, one of the people had set things up and he often talks about the importance of looking at the affirmative model of disability and not the tragic model as such, and I think you know when we talk about things like ableism and that it's so entrenched in society that actually it's that fear straight away, isn't it, of what's going to happen from there. So you were left in a situation where you're frantically googling things and without putting words into your mouth. I suspect that it's the googling and it's a fear and panic, potentially, of things from there. Or am I going down the wrong path there?
Speaker 3:Oh no, you're completely right. So I was in a complete state of fear and very distressed actually, and it didn't help. It was Covid at the time, so I was in that appointment by myself and the hospital kind of wanted you in and out.
Speaker 2:Of course it did yeah.
Speaker 3:So it's kind of rushed out and then obviously left, and potentially left for a week with no information, I think probably because of my day job, which is why I mentioned it at the beginning. That night I thought I'm just going to have to go into service manager mode. So I contacted the next day and I said that I wanted to make a formal complaint, and then I got an appointment within like three hours and for anybody who's heard my talk or might hear it in the future, that's one of my main points. Really, I think if I didn't do my day job and I wasn't as confident as I am, I don't think we would have got answers very quickly and I don't think even now she would have all the services that she needs.
Speaker 2:It's really interesting so that, yeah, it's that sort of cultural capital thing, isn't it where you obviously, because of the experiences you have just the skills that you have, obviously, and then because of some of the knowledge and of your understanding systems and things, it's so, so difficult, isn't it? I mean, like you say, a horrendous time for hospitals, with it being Covid and all the challenges there, but at the end of that it's a hugely stressful time. So, okay, so let's follow the story and we'll pick up different different parts as we go along.
Speaker 2:So 28 weeks scan. You then have an appointment which you've managed to get much sooner, and what happens at that appointment?
Speaker 3:So then after that so we had the consultant's appointment and they basically did another scan and he said in that appointment that because we'd had the first trimester test, which was low risk for Down syndrome, and because the baby's bones were white in a certain shape, he pretty much was discounting that condition. But he was concerned that the child might have dwarfism, but told us it wasn't the lethal type of dwarfism. So that was a bit mind-blowing as well, but he said he said there wasn't a non-intrusive test you could have, so like a blood test in the arm. But because we were at a much smaller hospital they didn't actually have the forms and the tests. So he said he would need to contact a larger hospital, which is Birmingham Children's Hospital, to get us the tests and the forms that we needed and then that blood would get sent off to London okay and then there'd be a 10 day wait period, which does feel like the longest 10 days ever.
Speaker 3:There were some mishaps on the way, so there's a few issues with communication, and they didn't take enough blood, so the clock had to start again. So that was very distressing as well. But yet, to cut a long story short, it was around about day six. We got a phone call from the consultant and he confirmed that our baby did have a contraplasia. He asked if we were aware of the medical concerns that could come with that. I was, because I had not stopped googling but my husband wasn't.
Speaker 3:He'd pretty much just decided he would wait until we knew for definite. So that was. That was a pretty tense time as well, because I was seeing like the colour drain out of his face as he was finding out the concerns, whereas I already knew. So there's concerns throughout the lifespan, but I think for infants in particular, there's increased risk of SIDS. There's risk of spinal compression, because obviously all the the bones are smaller, and sleep apnea. Those are the biggies that don't really get you worried.
Speaker 2:Okay, sids, sids.
Speaker 3:Sorry, so um, I've been a bit blunt, but baby passing away in their sleep.
Speaker 2:Okay, yeah, of course, because of the sleep apnea.
Speaker 3:And because of the smaller airways, I suppose. And then there's lots of other things you read about, like bowing of the legs, crowding of the teeth, hearing infections that can lead to hearing loss. So you're just reading, all, just reeling off all of those concerns really.
Speaker 2:And you're what now about 30 weeks?
Speaker 3:Yeah, about 30, 31 weeks pregnant.
Speaker 2:Okay, which obviously is, you are into the. You're just starting the fourth, the third trimester by that point.
Speaker 2:So, yeah, so already a challenging time physically, I would imagine. I've been told by my wife that, so that can't be great as well. You've got that stress and, as you say, you're almost wearing some of your your husband's stress as well. I think some of the reason why I'm so keen to platform that the story really is that well. I think your authenticity and your honesty with the story is huge and I hope that what I really hope from this is that maybe people who listen, who have some shared lived experiences although every experience is obviously unique and different, but, yeah can really resonate and understand that it's sort of not just them who've been through that. So, okay, let's continue to pick the story up. So now you've had that confirmed.
Speaker 3:Yeah, he was really honest with me, like he told us the potential concerns, but he did say you know, we're based at a smaller hospital, haven't really come across this before, so I'm no expert. There are some people at the hospital who've had a couple of people who've had this condition. We'd be doing referrals to those people anyway, because it would be a respiratory consultant to do with the airways and a orthopedic consultant to do with bone growth and they'd had a couple of people who had had a contraplasia and he'd do the referrals and get them to get in contact with me. I guess the issue with that was that those people wouldn't come on board until baby was here and, as you said, I'm like 30, 31 weeks pregnant.
Speaker 3:10 weeks is a long time to be left in limbo and I was very, very distressed and in my talk I talk about the grief cycle really and I guess as a social worker I'd always really associated the grief cycle mainly with deaf and losing somebody and not actually the loss of a life that you might have or a life that you, a certain type of life you might give to a child. So really, really wasn't in a good place, but in hindsight I would have been in a better place if there'd been information available.
Speaker 2:Okay.
Speaker 2:So let's unpack that a minute Because it's easy for me to just have mentioned before we've got the tragic model and the affirmative model of disability.
Speaker 2:So you have to excuse any point of my ignorance in terms of questions and just tell me off. Laura, that's absolutely fine, but I suppose it's easy to say that, yeah, it is part of the problem really that, because of the way maybe that we see disability in general, at that time it's just well, that's like the grief cycle. Like you said, I am grieving the loss of a potential typical inverted commas life moving forward and actually is there something to say that really what we well as a society we definitely need to look at more affirmative, look at how we see lots of things, but especially disability, but some support, potentially even in place of saying actually there are loads of things in life which are gonna be great here, cause clearly that's the case a bit like a film here. So I guess, if we're jumping forward a little bit, I'm guessing that what we're saying, that there are you've got a lovely, tell us, say Ella.
Speaker 2:Yeah, so obviously Ella's here with us and that's incredible. It's a big smile on your face now. So yeah, is there something about the messaging? Even that comes at that time, do you think?
Speaker 3:I think it is. I think it's like obviously you've got lack of information, so you're Googling, so you're only hearing the worst side, so all the things that could potentially go wrong with health. And then obviously it's the unknown, because it is really rare, so there's only like one in 25,000 babies that have it, so it is really rare. So, like I said, I've never seen anybody with it before. Really negative stereotype. So you're worrying about society and what she's gonna come up against as she's growing up and becoming older and being stigmatized, and it's all of that in one go and being pregnant and trying to keep the face on for the other children.
Speaker 3:It's just huge really yes a lot, but I guess, like again because of my role within my job, I was really on it to get information. I was very, very lucky that I contacted a charity and the restricted growth association and they actually paired me up with an average height mom who'd had a child with a contraplasia and she was saying my child hasn't had any of these medical concerns. They are rare. So although you've got a child with a rare condition, what you're reading is relatively rare.
Speaker 3:And she linked me to a Facebook page which is called Small and Tall here for All. And that was my lifeline, really, because that's where you meet parents who've got children with the same condition. And what I've learned on my journey is, because it is so rare, it's actually the parent that becomes the expert.
Speaker 2:Yes.
Speaker 3:And there was a parent on there who was talking about another issue and she said if anybody ever wants to talk to me, I'm here. So I inboxed her and probably one of the bonuses of being in COVID she gave me her consultants details who was a consultant in London and I did contact her and she set up a teams meeting with me.
Speaker 2:Amazing.
Speaker 3:Quite rapidly, which I'm not sure would have happened if we hadn't been in COVID, because it would have been like, well, you're not in our catchment area and et cetera, and what she told me in 45 minutes was so reassuring Not because I thought everything was definitely going to be okay, but because I felt like I was armed. I'd got fax, I knew what support we needed, when we needed it, who would provide that support, and that was a massive turning point for us. I think she was fantastic and so helpful.
Speaker 2:So I suppose that there's different things like sort of the zooming in and zooming out here. So obviously we're talking about really specific case for you, your family, for Ella, but there's far bigger learning from that isn't there.
Speaker 2:I think the things that stand out to me straight away are that, when you are talking about things that are rare, that idea that the parent becomes the expert is huge. The support from other parents, therefore, who are experts, and actually the positivity that comes from that. I mean, it's like you say, the Googling and it actually sounds like, when things are rare, that almost what we get given to us by this is no criticism, because I never would criticize medical professionals, by the way. You're all amazing if anyone's listening. But the information that sometimes, when it's a rare, it's something's rare that comes from medical experts, I suppose is like the enactment to Google, because they're also just giving you the and I know it's important to sort of give.
Speaker 2:I don't think it is important to give the worst case, but they're trying to be realistic, aren't they? But what you're saying, the bigger learning I'm taking from that is that actually, when we talk to other people, it's opening those conversations, isn't it? Do you think there's an element here and again, I could be really off here, so just tell me. But is it something about? The disability in some ways is still so taboo. We don't talk very much about these things, do we? So I think that's one of the things that when I listened to your talk, that struck me of God. Yeah, of course, all these things, but actually, why is all this new to me? You know we're 43, 42, then I'm a year and a year older, but yeah, why do we not have those things in it? It's we've got to be a bit better at society, haven't we talking about? Yet the positive experience is not always focusing on this negative outcome.
Speaker 3:I think people are scared to talk about it. I think they're scared to cause offence. So even since I've had Ella like we have a lot of oh, she's really cute and I can tell they want to ask me a question, but they're just too scared to ask in case they cause offence, where actually I'd much rather somebody just ask, because I think education's key.
Speaker 2:Absolutely.
Speaker 3:Which is one of the reasons why I started to do the talks. Really, I just because, a bit like you were saying, like I've been in social work for probably 18 years now but I've never actually worked in social work with people with disabilities and this has been a massive learning curve for me. So if it's been a huge learning curve for me that's attached to these teams and comes across some of these young people. Then for wider society, I think sometimes if disability doesn't touch your life, you just aren't aware of it.
Speaker 2:And so there's somebody really, really great things to pull up on there. So, yes, absolutely, and I think, as Julian, the disability is the only protective characteristic that at some point in your life it may happen to us. In fact, I think the older that we get, something like 50% of us at some point will have a disability of some sort. So we should really be talking about it. But going back to something you said just a little bit before that, that you know someone wants to ask questions, we talk quite a lot about this idea of cultural competence so that no one's ever going to know. Or if you think about equality, diversity, inclusion, there's this huge spectrum of all the protective characteristics and things that aren't included as protective characteristics. No one's gonna know all the answers to all those things.
Speaker 2:So we have to be able to ask questions because it's in the, it's the bit where it looks unanswered. It was probably where some of the problems occur. So it just and this is only a really personal answer, you're not giving an answer on behalf of every parent who has a child with a disability or every person who has a disability, but how? Because cultural competence, I've always said, is about knowing how to model, sensitive, authentic questions, but you know are sensitive. So you've just said you can see someone saying you might say, oh, isn't Ella gorgeous, she's cute, great, that's normal. But then you can sense that there's something else from there and you said you'd rather ask just from your own personal point of view, what might that look like? What do you think is a culturally competent way of approaching that? Would you suggest?
Speaker 3:I've had some people who've just come out and said it. They just said like, oh, she got dwarfism. And don't get me wrong, at the beginning, when she was a baby, it did hit a bit hard because to me, oh, she's in a pram and she's not open about walking, she's not comparing her to other peers, but actually it's liberating because you can say, yeah, actually she does. And I've had to come because I said earlier, I've got two birth children. I've also got two stepchildren. They're teenagers and I've had conversations with them where they've been like, you know, if anybody ever starts on Ella, that's it they're getting it.
Speaker 3:And I've had to say to them we need to be really mindful that there's different types of people in society. There's people that will want to be educated. There's people that will just be really inquisitive and know that Ella isn't quite average height, but they haven't come across dwarfism before and they don't know what it is. I said we like those people. Those are people that like they're genuine. They just want to know more about her about the condition. And we need to try not to be too defensive with that.
Speaker 2:Oh no, it's such a. So just even listening to it, it's such a delicate balance, isn't it? Because, then? So, because there's part of me that just thinks, yeah, it's a bit of a, it's not objective, but you know, why do you have to, why do we have to ask the question?
Speaker 3:It's such a as I'm just sat here, I'm pulling at it thinking Don't get me wrong depending on what day it is, that fluctuates for me as well, but I just try and remember that.
Speaker 2:It's context, I suppose.
Speaker 3:Yeah, not everybody's asking in a negative way or no and for some.
Speaker 2:So you know my background's in education, so I used to be an early years and primary teacher and so or practitioner, and so they are times where I would ask the question. I'm sure information would have been presented. I'm thinking in my own history. I can think of times where we've spoken to parents about, we've raised some issues with things. So there are ways, there are times where it's appropriate and, yeah, so I suppose context is absolutely key.
Speaker 2:But let's go back into the story because I'm about to turn myself into down a rabbit hole that I won't be able to get out of. So you've. So you're now in a long wait and you, thankfully, have had some support from the Facebook group, which has then led you to a consultant. You're feeling a bit more positive about things, is that right?
Speaker 3:I am feeling a bit more positive, but I'm still completely overwhelmed and I still feel like the key people who are local to me I haven't met. I'm not a priority at that point, which I completely understand. The NHS is overrunning, my child wasn't here yet and I'm pretty much at that point shouting out for some help. So I've been to the doctors, I have called every consultant that might have anything to do with us, et cetera, and then eventually I think we got to breaking point. So, because again we're in COVID, the doctors are only talking to me over the phone. So then I did have a doctor who saw me face to face and he did a referral to the peri-natal mental health team.
Speaker 3:So I had an assessment that was quite scary Like as a service manager, I know that it's a strength to ask for help, but it's also really weird being on the other side of the fence, so to speak. And you can understand why people are nervous about being truthful.
Speaker 2:Yeah.
Speaker 3:So I had that assessment and the outcome of that assessment was that I wasn't suffering any mental health issues, but I was having a reactive reaction to some distressing news, I suppose. But what that meant is I then didn't get a service, so again I was kind of left high and dry. I suppose I did get allocated a emotional wellbeing health visitor and she was lovely, but again a health visitor's role kind of kicks in post birth.
Speaker 3:So, yeah, it was just a really difficult time. Lots of like I say in my talk, I either was very, very assertive or in a ball crying. There was no middle ground really. So at this point we're having scans, fortnightly I suppose, with the consultant who would talk us through everything.
Speaker 2:Can I just ask what the again real ignorance. What's the purpose of having so many scans? What are they looking?
Speaker 3:I think at that point it's just to make sure that growth isn't stopping. I suppose.
Speaker 2:Maybe because, as you said, there are, if there are ways.
Speaker 3:So yes, there's the health implications still in utero, I suppose isn't there. And also what I found out was that although the limbs are shortened, the head's quite enlarged. So probably the most important reason why you need to scan is they need to see where the head is measuring on the chart to be able to determine what kind of birth you should have. So could you have a natural birth or is the head so enlarged that that's gonna cause complications and you need a?
Speaker 1:C-section.
Speaker 3:I also had some extra distress thrown into the mix at this point because unfortunately my hospital was all over the national news for significant injuries or death of babies.
Speaker 2:Yeah.
Speaker 3:So at this point I'm already wobbly and distressed and now I'm extra wobbly because I'm like can I even trust the hospital, although my consultant was lovely, but can I trust the decision that they're going to make? So we had quite a few discussions about what type of birth I should have and I guess the consultant was leaning more towards a natural birth because, at, say, 36 weeks the baby's head was below the top line and not over the top line. But luckily I had the London consultant, who's, I suppose, come across a lot more children with a contraplasia, and in the discussion with the local consultant he was saying well, I was saying to him we have to remember that with my first birth it was a difficult birth and I had to have instruments and he was like that's fine, I still think you can do it. Where, when I liaised with the London consultant, she was saying you really shouldn't use instruments with babies with a contraplasia because I've got low muscle tone, weak back, neck and spying.
Speaker 2:So you could do some damage.
Speaker 3:Obviously, that just sent me into more distress. So what I ended up doing was I ended up negotiating with a consultant and saying, right, what we'll do 39 weeks I'll have a sweep, I'll come into the hospital, I'll see if I'm ready to give birth and if I'm not, then I want to plan the C-section. So we booked in a C-section date and we booked in a sweep and an examination and I had the examination. Let's just say it was the first day and actually it didn't look like I was ready to go into labor. It looked like I could have to be induced and there's a heightened risk when you're induced to be using instruments.
Speaker 3:So the following day I had the plan C-section. Okay, I was terrified.
Speaker 2:Yeah, can you imagine?
Speaker 3:I had been quite outspoken about the fact that I wanted neonatal support in the room. Et cetera, so went down for the C-section, had neonatal team on standby and it went really really well. So Ella was born, no issues. We went to I think they called it recovery went to recovery.
Speaker 2:Tea and toast. Yeah, tea and toast, best toast you've ever eaten, yeah, yeah. So believe me.
Speaker 3:And then we were in hospital for three or four days.
Speaker 2:Okay, wow.
Speaker 3:So that was how we got to the birth point.
Speaker 2:Okay, brilliant. So Ella arrives, and at least you know she's arrived safely. And you're at that point. Can I ask how old Ella is now?
Speaker 3:She's two and a half now, two and a half.
Speaker 2:okay, so we've had two and a half years of being mum and dad to Ella, and she's under the only little sister, isn't she?
Speaker 1:Yeah.
Speaker 2:So and talk us through that then. So these two and a half years, yeah, how have they been?
Speaker 3:So I guess it feels really odd saying this now. But even being pregnant, like you're googling, like what do babies with Dorthan look like when they're born?
Speaker 1:Yes.
Speaker 3:So obviously she came out, she was well, she looked like me and you yeah, All was fine and could tell straight away that diagnosis was right. Because she, you know, like even a newborn baby girl, was too big on the arms and legs, she'd got like a flatten bridge of the nose et cetera. So I was in hospital for the three days I made sure that before we left we'd got referrals to the specialist at Birmingham Chilins Hospital the respiratory consultant, Neuropaedic consultant and she also had like an ultrasound on the brain.
Speaker 2:Yeah.
Speaker 3:Obviously I'd had the C-section so went home just bedded into a normal mom baby life, no sleep.
Speaker 2:So you know you're talking. Then, as you mentioned about again, is this it's a representation thing, which, again, this is no criticism of the NHS, because they're amazing, but I think it's a more broadly societal issue of we don't do a very good job of that. It's not just even the NHS, it's wider than that. But when we see images of things, so often when we talk about, if we're thinking about the notion of race, things that aren't rashes look different on different skin pigmentation and things like that but actually, again, it's not just about having representation, but when we think of a baby, there are lots of different outcomes and things that can happen but not very good. And I say we, I mean a whole society aren't very great at sharing issues, sorry, sharing images of typical situations, but where the child has a condition of some sort.
Speaker 2:And it's so. Yeah, because, like you say, we shouldn't really be forced to be Googling, we should have some type of idea. And I'm sat here thinking, yeah, but I don't know that. They're really simple solutions, really aren't they, to some of these things? It's just the usualizing of things. So, yeah, it's just as typical as anything else that you say the rare conditions, but it's not.
Speaker 3:I think we're just so, like we said earlier, we're just so busy as a society. I think some things just don't realise how much of a situation you're in that situation Because so much stuff goes through your head that you've just never even needed to consider before.
Speaker 2:Yeah.
Speaker 3:And because of that, because it's difficult to get correct information, images etc. It's just mind-blowing. And that's what's overwhelming Like when I look back, I think the mental health struggle wasn't necessarily because I was having a baby with contraplasia. It was the fighting and arguing for information all the time, getting people to phone me back when can I get this from? Have you done that referral? Oh, you haven't. Can you do it then? When are you going to see us? It's that.
Speaker 2:Do you think some of that is partly because of also the lack of knowledge and awareness? Or obviously there's a lot of those people are experts in the field, or what would you say? The what are you presuming the reasoning is around that Because it feels like surely that's the time to. It's obviously going to be stressful. So, yeah, does it come from a place? Because it's rare and they're not sure. Do you think?
Speaker 3:I think it probably does. So I think again we're saying NHS not necessarily just then, but that's so busy. And then if something's rare on top of that and they're not come across it? Have they actually got the time and space to go away and get that information and support people? I've just found from the outside.
Speaker 2:I have to put myself on the line there just saying the answer to that is definitely not no, the overworked, underpaid, and there's no doubt about that. National Health Services is wonderful. It's not a criticism of that. But when you are at the service user's end of it and there is something which is maybe slightly different to the day to day things, god, that sounds such a terrible way to talk about medical things the day to day. But yeah, I can really see that that is a challenge. I mean, I think ultimately, the call is that I fully believe that we need to put more and try not to be too political about this, but the NHS needs more funding there's no doubt about that to continue to do the job it does.
Speaker 2:But before I get dragged down a particular rabbit hole but God bless the NHS, so okay. So Ella's born and things. So how's experience been so far? Then I'm going to be really honest to ask the questions that, again, are probably ignorant. But does it lead to lots of additional appointments and things? Or is it just cruising along and help? The health visitor comes? Does standard things like the various different checks at different stages and all those things?
Speaker 3:So it's a lot of appointments. So I'll just give you a bit of some insight. So, for example, so Ella's two and a half now, so she's had and still got, mainly so respiratory consultant, or for PDIC consultant specialist, a congenital plasio consultant, physiotherapist, occupational therapist, run a waiting list for a portage. She's been speaking language this morning and then you've got your health visitor, community pediatrician midwife, okay, so there's a lot.
Speaker 2:So listening to that, I think that there's a clear message coming through for me, because I say I learn on as I talk to people, this journey as well. So it almost appears, like you said at the outset, sort of post once you are a service user and there is a person who is part of that service user the tele who's the service user there, then that's almost where things really kick into place. But it's, I think, for me what I'm really getting from this is. It's the one the support before for you know, whilst you're pregnant and processing all that information, but also for that. It isn't.
Speaker 2:That's not just an NHS issue, that's an issue for all of us to be more informed and, like you said, educated about the fact that we're never going to know every condition that exists. But actually just by being exposed to more conditions of things. I mean I wish I'd looked and Googled the figures first, but I wonder, and obviously I realise what you're saying is really rare, but by the time you add all the rare things together, I wonder what the actual number of children are affected by some type of condition when they're born.
Speaker 2:And actually where do we see those conditions? You know we mentioned Down syndrome before. I know plenty of people who have children with Down syndrome great, absolutely amazing children. But it's still I know from their personal experiences it's still a shock and it's the same thing that you've described of having them to go and like what do we need to find out or what's going to happen from birth. And yes, there's an NHS implication to that, but it's for all of us as well. We should be just be a bit more educated about it. And again, I think it really comes back to that underpinning thread of the sort of the tragic to affirmative model of disability and just I use that term usualisation of the fact that, yeah, of course there are conditions, but we just need to be more aware of that and understand that that's the case.
Speaker 3:But pre-birth, the people that that is a lot. I've got lots of friends and family who are lovely, but the people that I wanted to speak to, who I found most supportive with the ones that did, they went and read. So they went and read about it. They came back with positive stories. Yes, at all. She knows this. I don't know this bath seat you can buy. Do you know, this is a good car seat to buy. It was. That's what I needed.
Speaker 3:I needed people who wanted to be informed were practical and in some case, because my head was just so fried from it all, like sometimes I would write a list of questions, I send it to a couple of my friends and say can you read this list? Is there any questions you would add? And that's what I felt most helpful in that situation. I remember my husband speaking to his brother and he said I'm not gonna say sorry because you're having a baby. And I thought what a great way to say it.
Speaker 2:Yeah, so it's some of the more simple things. Do you know what I've experienced? That recently I was told of a friend's family and they'd mentioned it a condition, and that was my response. However, I think that's only due to the education side of things. So I would be absolutely lying if I hadn't said because now my role is involved across EDI and across that spectrum of it I have to and should be reading up and I am getting more educated and never be complete. It's a very long journey, but I understand that because I listen to people's views and so, but for many people, I suppose, are just so busy going about life and everything else.
Speaker 2:But the education piece is crucial, and I say that with anything. I'm already sat and thinking God, it's really challenging because I talk about so if I'm given some anti-racism training, ultimately, the message that I say at the end is that you'll never get enough from conferences or training. You have to read it. If you're passionate about it, you need to be educated. And now sat here thinking, and if you want to understand and not uphold ableism in all its forms and contribute to this type of thing, then you have to go away and read about it. But that is ultimately the answer, isn't it? You have got to be engaged. But that's great that. So your brother-in-law then was just straight away being able to say, yeah, congratulations, great, yeah, that's really good. I'm gonna give you a warning, laura.
Speaker 2:The point in the podcast where I give people a warning say the podcast is called the Diverse Podcast will it make the boat go faster? The idea that we maybe leave our listeners with something tangible, call to action, something to read if we want, or something they can go forward with. And I think, in terms of the boat going faster, here we're thinking about the support, and this notion of challenging ableism, I think, is the overarching theme that we're talking about. So I normally waffle for a minute, so before I'm gonna let you think of that. So you're gonna have to multitask, so you're gonna have to think about what it is you're gonna say, and I'm just gonna ask for an update because if I was listening I know I'd be sort of hanging on now. So Ella, she's two and a half happy young girl.
Speaker 3:Oh yeah, she's absolutely smashing it, to be fair. So we haven't had touch wood. We haven't had any of the medical concerns so far. She's got everybody on board now that she needs to be on board. She's the most determined little girl I've ever met in my life. She's very fiery and feisty. I'm trying not to-.
Speaker 2:Listening to what you said before, I wonder if she gets that from. But there we go, yeah, yeah.
Speaker 3:I'm trying not to downplay that out of her because she's gonna need it later on, but sometimes think, oh, give me a break, Ella. Yeah, feel imagine she's just doing really well she's. If you do do some reading, you'll find that babies with a contraplasia will reach their developmental milestones. It'll just be slightly later than their peers.
Speaker 3:So, she's reached all her developmental milestones in line with her condition. She's just brilliant. She's doing really well. I don't know if people know, but we hold the National Dwarfism Games in Wolverhampton once a year at Audisly. So we went to that a month ago it was about a month ago and then she won three gold medals. So she did the 10 meter run, the tennis ball throw and the frisbee throw.
Speaker 2:These are amazing. 10 meter run sounds like the type of distance that I could get on board with. That sounds amazing. Do you know what? Again, I've just sat and talked about the fact that, if it's only through education, I'm sat in Wolverhampton and if you'd have given me a million guesses to what you said was hosted here, I wouldn't have come to that. Okay, wow, how amazing that that's.
Speaker 3:on the, We've met like a whole community of people we wouldn't have met.
Speaker 2:Yeah.
Speaker 3:And I guess that was one of the other reasons why I've done the presentations because they were so helpful and supportive when I was pregnant and within those first couple of months that I guess it's my way of paying it forward really.
Speaker 2:Yeah.
Speaker 3:So we set up like soft play events for toddlers so we've got a safe space to talk with parents and our children can meet other people with similar conditions so they know they're not the only person.
Speaker 2:This is amazing, so you are very much paying it forward. So where do people find out about those things like the soft play and so you'll find there's lots of different places.
Speaker 3:So there's the soft Anything to do with sport. I pretty much would look at the Dwarf Sports Association.
Speaker 2:Okay.
Speaker 3:So amazing. And then there's Little People UK, so that's more about like meetups, conferences, support and the Restricted Growth Association as well.
Speaker 2:Amazing.
Speaker 3:And then there's moms like me who just take it on themselves to start Facebook groups or WhatsApp groups and set some meetings. I suppose so because it is rare, but I've probably found spanning from, I don't know, Worcester to Stoke. It's probably about 10 of us.
Speaker 2:Yeah, so I think this is the thing, isn't it I've seen so. Yes, rare, but that's quite a small geographical area really In the ground scheme of things. And yet there's still 10. Isn't an insignificant number of parents, is it?
Speaker 2:Are they all with parents of children of sort of early years and primary age, or yeah, so there'll be more, yeah, so that's what it means to be more, if you widen that as well, okay, so first of all, lord, before we get to that core fraction, it's been such a pleasure listening to your story and having you share it for us again. Thank you so much. I'd love to get you to come back in for another podcast and it'd be great to keep up and just carry on. There's so many things that I wanted to ask today that we haven't actually got into, but let's bring you back for another point. That would be great if, as long as you'll come back, that is?
Speaker 3:Oh, of course I will.
Speaker 2:So at this point, laura, what would you say then listeners could do to make the boat go faster, or what type of call of action do you think put you on the spot?
Speaker 3:Okay, so there's obviously smaller things you can do, so like this you know fact-finding, so reading up In October it's Dwarfism Awareness Month, so I did a bit of a social media campaign to wear green on a certain day and that just took off really.
Speaker 3:So people are like, oh, why are you wearing green? And then it just sparks a conversation. I always say to people that have listened to the presentation that if they just shared one fact that they learned with one other person and that carried on, that ripple effect is actually quite huge. I guess, just in terms of not just to do with Dwarfism, but I guess it's just taking some time out, take a step back and just think about society as a whole, not just you and your position in society and what might be going on for you. Yeah, because we are busy and we don't have to headspace nowadays and I think it's just that really. So taking some time out to think how certain things might affect somebody else. You know, like before I had Ella, I didn't even think about the fact that somebody with Dwarfism might not be able to get cash out of a cash point.
Speaker 2:Yeah, yeah, that's the. This is the ableism thing, isn't it? And it's the notion of privilege as such, that the world is designed in a certain way, and it's not until you look through the lens to realize, actually, there are so many physical and hidden barriers to access things, and I guess that is all about the fact that I've been talking a lot recently about that. Diverse teams thrive, so, whatever the industry or institution or organization or society will always thrive with diversity, and that's why it's really important to involve people with a range of diverse backgrounds, because, again, I don't think society's been set out that way to disadvantage people. It just hasn't been considered. That's the audacity of it, isn't it? It's just not a thought because we're not thinking about it.
Speaker 2:And I think you write that they're great calls to action, because the notion of learning something and passing it on, that ripple effect that goes forward from there, is huge, and this podcast is part of that, I think. I think, then, we need to get in touch with each other, because let's get something in the diary for around October and let's do something in the university to support that. So that's good, we will definitely get that sorted. But, laura, thank you so much for coming on. Thank you for giving up some time. Yeah, I hope to be able to get to meet Ella at some point.
Speaker 1:Another feisty word, so that would be good.
Speaker 2:But thank you so much, laura, and we look forward to getting you back on in October then.
Speaker 3:Thank you very much Thanks, Laura.