 So today, we will be having the next presentation titled Believe the Experience of maternity midwife with babies, with bond with Down syndrome, and to do justice to these, we have Nicola So Nicola, I'll be handing over to you from here, over to you from here, Nicola, thank you. Brilliant, thank you very much Buki, delighted to be here and happy International Day of the Midwife to so many midwives we have joining us today. So I'm sorry, do I have control of the slides? Sorry to be able to move them forward. No, thank you, I can see that now, that's smashing. Okay, so I'm Nicola and here in the UK, I originally set up a small regional support group in Warwickshire, and then five years ago a national charity Down syndrome UK, which incorporates positive about Down syndrome. I've also been quite heavily involved on a sort of campaigning and lobbying side as vice chair and founding officer of the National Down syndrome policy group. And I think probably the best job I have and the reason why I'm here is as mum to these two young people, Emily and Tom, and Tom, who's 18, arrived with a little extra with an extra chromosome. And really that's been the sort of motivation for me in setting up and running these charities. So a little background about where I came from in terms of becoming parent to Tom. At 39, my obstetrician was very clear that I was high risk, as he liked to refer, of having a baby with a genetic condition such as Down syndrome. And I'd been for extra tests, I'd paid for the Nucle test, because I was of the view that I would probably not want to continue a pregnancy if it was identified that that baby had Down syndrome. Having received a high chance results, and then at the 20 week anomaly scan, there was concerns expressed that it looked like Tom had baby had talipase. I was immediately booked in for an amniocentesis the following week. And briefly, I went home, Googled, not a good thing to do. But having suffered several miscarriages before our daughter Emily, I decided not to risk having a diagnostic test. And so I canceled until this day I was saying it's best decision I've ever made. So when Tom arrived, I had 24 hours of being euphoric. And then when he was yesterday old, a pediatrician expressed concern. And I was basically found myself in a very, very difficult place. I was overwhelmed without data dimetry. I was the hospital weren't great. Well, they were pretty poor at providing me with meaningful support. There was no information. And I struggled enormously to the point that I actually wondered if our lives would be better if Tom didn't survive. He was in Scaboo. And in fact, we left the hospital originally without him as we considered whether or not to have him adopted. I'm delighted to say we went back and we brought Tom home. It's been a fabulous life ever since. He's now 18. As I said, he's gone all through mainstream school and he's currently trained to be a fitness coach. And if any of you know of certain Joe Wicks, you may see Tom's recorded a session with him and he's the light of our lives. So as a charity, as I say, we work nationally now and we work very hard to not only support, expect and to new parents, but also to campaign and lobby because what I've discovered is that 18 years on there's still a lot of stigma and discrimination towards those with the condition. And so I was delighted to pay a part in the lobbying and implementation subsequent of the Dance Syndrome Act. And briefly, I sort of set out why that's been such an important act here in England. And I think these issues really start in maternity care. There is a tremendous stigma towards people with learning disability and discrimination. As I say, I found a desperate lack of information and support and we still see that there's often an issue around the children get older, diagnostic overshadowing of any sort of issue being attributed to them having Down syndrome not actually investigated fully. And what we often see is that there are low expectations, particularly when they get into school, outdated attitudes and assumptions. And, you know, we address the elephants in the room. There's often a belief that people with a learning disability such as Down syndrome are inferior to those without and it's a life not worth living. So as a charity, we believe passionately that every woman who's received a high chance or a confirmed result for baby having Down syndrome has a fundamental right to enjoy that pregnancy free from any discrimination and not to be subjected to some of the languages and attitudes that sadly we hear still prevail. So to do that we work extensively across the UK providing information and support and training to maternity units and, you know, signposting to our services so that our parents can be well supported. And we do that we have a fantastic online forums through close Facebook groups. And we provide counseling to parents by an independent professional. We deliver training to professionals, you know maternity care and then through nurseries and schools and to our parents too. So we're currently supporting just 92 at the last count, expectant women. We've welcomed over 250 babies and we take a very holistic approach. We also support grandparents. And we're there for a parent from the day they discover baby has or may have Down syndrome and we also have some fantastic breastfeeding support. And as our little ones get older, one of our main initiatives is also around toilet training. So we're really immersed in providing care to expectant to new parents. A quick overview was what it means to have what Down syndrome is. So it's a genetic condition that happens by chance at the time of conception. Babies with Down syndrome were born as I'm sure people are aware across the world to women of all ages backgrounds. And it's basically a third copy of the 21st chromosome. Having Down syndrome does mean that you will have a learning disability. People with Down syndrome do share some common physical characteristics, but I think these pictures depict really well. Someone with Down syndrome look far more like their family members than each other. And people with Down syndrome will quite often have additional health needs. Nothing that's unique to anyone with Down syndrome. But there is a higher incidence of certain conditions such as a heart defect. And there's a lot of outdated stereotypes out there. People with Down syndrome are not all happy and loving all the time. Trust me. So in maternity care in the UK, Down syndrome is screened for. It's part of the screening service that's available to expectant women. And in the last couple of years, Nifty's also become available on invasive prenatal testing. It's saying that the accuracy rate of the figures are as high as they're claimed. Excuse me. And I guess one of the things that motivates me the greatest is the fact that we still see the majority of women terminate their pregnancies. In the United States, there's been a large study conducted by Brian Scott Coe of over 2,000 parents. And you can see these figures that despite all the fear, the stigma, the prejudice and so on, that actually when someone has a baby with Down syndrome, the vast majority love their child and are proud of them. And I think there's often a big concern around expectant new parents. For myself around the impact that this baby is going to have on any siblings. And yet in the same study of several hundred siblings, you can see again that those family members are loved valued members of their families. Really importantly, we must listen to the people with Down syndrome. And in this survey of adults with Down syndrome, you can see that they are very happy with their lives. And love their families and enjoy their lives. So it's quite a dichotomy that here we have this situation where people with Down syndrome are loved, valued members of their families and they themselves enjoy their lives. And yet we see the majority of women, vast majority of women terminating. And so, you know, it's interesting to ask why. And I think this is what prompts a lot of the work we do. We published a large report three years ago. Now, four years ago, we're just repeating it, but we're at university. It was 1400 women's maternity experience in the UK and just a couple of key sort of statistics from that. We found that when the news was being shared around baby having Down syndrome, we can see that in the, in all cases, well, not all, not all, not postnatal, but whilst, you know, they were given a natural diagnosis, 46, almost half percent was delivered in a very negative manner. And likewise with with a high likelihood and postnatal just over a third also negative. The key findings were that there was also an expectation around on women to screen. It's an opt-in. It's not standard routine. And yet the majority believed it to be part of that. And those who said they didn't want to continue were asked again. We see far too many, you know, the language being biased and directive. We've conducted freedom of information as well with screening results were still referring to risk when public health and the NHS now advocate the use of chance or likelihood. And we see that 69% of women when they were expectant women being given the news that baby had a diagnostic result of having Down syndrome were offered determination in that same conversation. And for those expectant women who advised that they were continuing with their pregnancy, you can see that they're repeatedly offered terminations and we do take issue with women's choices being questioned and undermined. One of the big issues I know for myself had been the lack of information and support and our data corroborated that as being an issue. Not just, you know, still ongoing. We produce this because we think it sort of sets out the context. It does perhaps explain where a lot of the attitudes have come from. Just a couple of key dates here in 1967 when the abortion act was introduced. At that time life expectancy for someone with Down syndrome was mid to late teens. So it was considered a life limiting condition. But with the introduction of heart surgery in the sort of 70s and 80s. Obviously the outcome for people with Down syndrome has improved and life expectancy in the early 80s. So very much in my lifetime has moved from increased to 25 years to more recently when people with Down syndrome are living to be 60 years plus. When we look at how Down syndrome has been portrayed, it's perhaps no wonder that so many women are afraid of the condition. I always say Tom's the first person I met with Down syndrome and yet I was terrified of the condition. You know, it's traditionally been listed, you know, a range of conditions. Pretty offensive way of sort of labeling someone. I always think it's like characteristics of a dog or something. And the World Health Organization didn't do us any favor. I think this was just two years ago. They referred to Down syndrome as being a birth defect. So that's how, you know, the Down syndrome has been portrayed medically. And often, you know, when I expect into new parents and being given the news that baby has Down syndrome, the language is very inappropriate and quite offensive. And I can guarantee that every parent will remember exactly the words that were told when they were, you know, the news being shared. I won't read them out, but they're just some of the examples that, you know, we must, must consider. Imagine there's someone with Down syndrome in the room and you would you be saying those things. So life's moved on so much as I say back in the 60s it was life limiting but today in the 21st century people with Down syndrome are absolutely living their lives to the max. There's, you know, medical intervention has improved as indeed also in education. And just in general, whilst I say there are low expectations, opportunities are increasing. And as a result, people with Down syndrome are able to, you know, thrive and live very full and rewarding lives. A couple of worries that parents often have is this burden, the impact on their family. And yet as we've seen the statistics bear out that siblings wouldn't be without their child, their brother or sister with Down syndrome. Certainly my granddaughter is, you know, absolute Tom's greatest cheerleader. And I think for many of us when we're new parents, we worry about the future and that our child will be, you know, a burden and never leave home. Tom's quite keen to go. I'm not. He's definitely has the ambition of wanting to get married. He has a girlfriend and get a job and leave home. A different study. This was conducted around how parents feel. And we can see here that, you know, vast majority again feel that they've grown. I definitely have grown as a person. I feel I'm a better person for having Tom in my life. And, you know, we learn new skills without doubt having a child with a learning disability really puts things into perspective. Tom says it how it is and doesn't, you know, waste time that a lot of us do around absolute nonsense. So how can we, how can midwives and maternity professionals really ensure that our parents are receiving the best possible care and support? I think a really key element is to have a contemporary understanding around Down syndrome. Forget all the stereotypes, all those outdated images you may have. I mean, it's fabulous that we've now got a young chat with Down syndrome in the Disney film Peter Pan that's just been released. Ellie Goldstein's on the cover of Vogue this month. Things like that I think will have a hopefully a positive impact. But it's really important that as medical professionals, people understand what it means to have the condition. We were delighted to work with St. George's University Hospital Trust in London four years ago. And we've introduced a care pathway, which I'd urge anyone to reference around the importance, you know, the higher chance of our babies being stillborn and premature. So that's something that's available on St. George's website and indeed our own Down syndrome UK. Implementing that has a significant impact obviously on the well-being of our babies. Really important for people to consider the language they're using. I think language definitely reflects our attitudes. As I mentioned earlier, we no longer use the word abnormality, problem, disorder. I'll never forget them, you know, referring to Thomas having a chromosomal abnormality. And, you know, when you're thinking about talking to a parent, you know, the mindset of you're not breaking news. Again, that always has negative connotations. It's about sharing news and that news may be unexpected or different. It's not about talking, you know, labelling news as being good or bad, you know, what a relief it's low chance. That sort of mindset we've got to stop. And the whole word of normal, I think a lot of parents struggle with as well. You know, again, it infers that their baby there's abnormal. And we do very strongly advocate the use of person first language. So we would always say a baby with Down syndrome, not a Down syndrome baby, actually just to use the baby's name. So some just hopefully practical tips really that we've learned over the years from supporting so many parents. And I hope really that perhaps by listening to this talk that you're empowered that you now feel more confident and aware that there's nothing to be sorry about if you're speaking to an expectant or new parent. We have this mindset that there is, but honestly, our babies are absolutely our children with Down syndrome are very fine. Do be supportive, you know, and it's really important to sign post people. Obviously, it's never one size fits all when you're speaking to any parent. And I have to say one of the worst things that happened when Tom was born, he was a mid August birthday and all the junior doctors were doing the rounds. And he became a medical exhibit. Don't please, you know, see babies as, you know, an opportunity to start saying, oh, and here's, you know, have they got the parma crease? Have they got the sandal? Don't it's a baby, you know, and not to be used, you know, as an example. Always, always congratulate a parent, please. And that's something I really, you know, noticed and we hear it all the time with parents being told, oh, sorry, it's bad news. You know, the baby has got Down syndrome. Just say, you know, congratulations, baby's here. And then as when, you know, it looks like if it's postnatal diagnosis, you know, baby may be showing signs. There are markers that maybe have baby has Down syndrome. And obviously we'd ask you if you're in the UK to sign post to ourselves in order that parents can receive the support that they need, because I think it's a huge thing for a parent. I know I felt so alone, desperately alone, loads of friends are having babies. My sister had not long had one, but I felt so alone when Tom was born and when parents join our communities and they reach, you know, in our new parents group, I think there's 950 parents there at the moment. I can feel the sigh of relief as they know that they're not that there's other people there who've had the worries and concerns they've had. Here in the UK, there are actually very good services available, a bit hit and miss, but in theory, and hopefully that will improve with the implementation of the act. And our community is phenomenal. We have, you know, wonderful support nationally and regionally. So yes, as a as a charity, we're very much here to support our expectant and new parents and that carries on through to school, but they're just sort of some of our groups that we have. And indeed maternity professionals, we have a bank of fabulous resources that are available online and also published. We've also done quite a lot of work around breastfeeding. It was something I was quite passionate about realising how often our parents weren't being supported. And we've done published two reports on this now. I think both have been in the British Journal of Midwifery. There's this assumption that babies with Down syndrome can't breastfeed. I think 40% of our parents were told that their baby wouldn't be able to breastfeed purely because of having the condition. And yet our survey shows that for those who did breastfeed at six months, 66% of our mothers were who started breastfeeding were still doing so. In contrast, almost double to UNICEF data in the UK at that stage. So it is about again, you know, we have breastfeeding support. We have a couple of trainers who deliver training and also support to our parents. These are some of the two holds that are more supportive for our children. And there's details there of Sarah who delivers training for us. This is a lovely example of good practice. I've talked a lot perhaps about some of the negative things. But you know, when you get it right, it's not difficult, but it has a huge impact. So the midwife just saying, you know, results back and acknowledging that it's difficult perhaps for that parent is a lot of information to take on, but not putting her the parent under any pressure. We can call you back, arrange a meeting when it suits you and signpost you and answer questions. And that I thought was a great way for that parent to be supported. So to conclude, please make sure that you and parents have access to a contemporary understanding around our lived experience. We often see or hear of an expectant or new parent when they're given the news that people, medical professionals feel obliged to suddenly remember everything they've ever learnt about the condition. I was told when Tom was two days old that he wouldn't be able to go into trampoline, which wasn't desperately relevant at that point in our lives. That he'd never been able to play the piano. Oh, just nonsense. You know, so just tell people what they need as and well. Keep information in context. Certainly, you know, things around heart surgery. I didn't really touch on, but we again, that's something we have a heart body system. And yes, it's about 50% of babies with Down syndrome are born with a heart defect of those 15 to 20% require surgery. And nowadays, the vast majority of the surgery is considered routine. So keep things in context. And our babies are staring me how quickly they recover from the surgery and thrive. If you're, you know, sharing the news don't, you know, often we hear just this week, I was reading expectant women's story that, you know, she was having a scan and suddenly the room's full of eight professionals all there to. You know, find out what's going on and share their views and so on. So keep calm. Don't overwhelm parents. Use person first language and ideally be positive, but definitely don't be negative. We have monthly webinars that are available online and free for anyone who's interested. They're the last couple we've held. So do please register on our website. And that's my information and details of our website. And I think I'm just about on time. Have I done all right, Boogie? You have few seconds to round up. Oh, okay. Yeah. Well, basically, you know, we're here to support and help, you know, we deliver a lot of training to medical professionals and indeed to the universities to train our future midwives and medical practitioners. And, you know, really happy to help you however best, you know, whatever people need. Great. Great presentation. Very encouraging and engaging presentation. Thank you, Nicola, for this insightful presentation. Thank you very much. Taking us to the team Down syndrome. And the key team I can bring up from this is that we should never see a child born with Down syndrome as a body which will be positive. I have some questions in the chat box. I have some comments from Celine. Celine is saying, excellent. Celine is asking a question about what about informed choice, informed choice about prenatal testing. Do you have a decision, what is decision A, example of the decision A? Okay. Thank you. So I guess the whole thing around informed choice. If I take it back a step, I actually, it's something we've been campaigning just last year. I've got a big poster up on my wall there with a pledge that was signed by a load of parliamentarians when we were at Westminster last year. Around the fact that actually a woman being offered a termination purely on the basis of a baby having a genetic difference. As I hope I've made clear, we are not anti-termination at all. But what we are against is any assumption and expectation that a woman should terminate. And I think in the UK we do have this system whereby when the woman's given the news baby has Down syndrome, she's offered that choice. By my mind, you've actually undermined a woman's autonomy by deciding which pregnancies we're offering the choice on. So when I was pregnant with my daughter, there was no, you know, never any mention of me considering a termination. Three and a half years later, me again, same family situation. And yet as soon as it was identified that it looked like Tom may have a genetic condition. I was all being told I had this decision, this option to consider. So I do think, you know, that women have the right to terminate any pregnancy and that we shouldn't be determining, you know, deciding which of those, which of those pregnancies she should be, it should be suggested to her that she terminates. We've as a charity supported women who do terminate and completely respect that that's their choice. And that's fine. What breaks my heart is when we know that women are being pressured, you know, and there is coercion, the language, you know, we've seen it. Because obviously those we surveyed were the women who continue pregnancies, you know, being offered at 35 weeks. Termination, even when you've told the medical professionals countless times that it's not on the cards, you know, it's offensive and it's wrong. And so we do need to really look at that. So, you know, it is, of course, it's a woman's choice, always a woman's choice of whether or not. And we talk about informed choice. Women should always be given, you know, information that's relevant at that time. And I think too often women are just giving the information around the option to terminate. So I've probably gone on a bit there. Sorry. Yeah. And Celine also mentions this, this advice that there's a lot. You're right. And I think it's just about, you know, medical professionals, all of us thinking about our biases. I mean, certainly when Tom arrived, my goodness, I was, you know, a mirror. I had to hold a mirror up to myself and think perhaps I was as full of thinking and accepting as I'd like to think I was. Yeah. Thank you, Nicola. In the course of the presentation, you mentioned support, including online support. Are there support? This support, are they only for UK residents? Yeah. Any plan of extending it to Africa, like I'm from Nigeria, I'm an African from Nigeria. Any plan of your support group to extend this support to such countries? Oh, that's great question. At the present we are UK only. We make a point, we want to have experts available around, you know, the services that are available and the practice obviously that is, you know, and the services that are available in each country. There are more generic support groups. There's one called Future of Downs. And that's, I'm admin on that. And that's an international group that any expectant or, you know, parents can join and they get, that's a lot of sort of peer support. But we have kept it UK based at the moment because there's a lot of the services, the benefits and so on are obviously. I mean, we see it, we have devolved nations that, you know, we have slightly different legislation in Scotland versus England versus Wales and Northern Ireland. And that in itself can be confusing for our families. You know, as they start, for example, the education system, they have different legislation that applies. So I'm afraid we are UK only. But, you know, if you are a midwife from beyond the UK, then I know certainly Australia and Canada have very strong support groups. And Africa, I don't know so much about, I'm afraid, Buki, but as I say, within our community, we do have a group called Future of Downs. That's international. Thank you very much. I have a question here. What is the meaning of PADS? PADS, I'm sorry. That's our group. PADS is positive about Downs Syndrome. So we have, PADS is our early years. It's our maternity and early years initiative. And that's where we do, that's our brand, as it were, that does all the work in maternity care. And then as they get older, I haven't spoken to you about, but we have something called STAR that support training and resources. And we also touched by briefly, we have an initiative called Pants for School. That's all about toilet training. So PADS is the brand that most medical maternity professionals know us as. And DSUK is the sort of umbrella organization that PADS sits under. That's fantastic. I have here informative and inspiring, coming from the audience, informative and inspiring, beautiful presentation. Thanks so much for your presentation. That's for SELINE from SELINE. SELINE is requesting, is it possible to have this presentation in French version? She's asking. Sorry, in what format? Yes. I mean, you can have it however you like. I don't mind. Assuming we can do it, people can have it. Okay. Okay. And certainly, you know, for any midwives. She said, I would love to have something similar in French. Oh, in French. Okay. Yeah. Make a pun. Our websites, so we've got two websites, PADS, Positive About Down Syndrome and DSUK. Both of those can be translated into 100 plus languages. So I'm afraid, I don't know that I can translate the presentation, but most of the, a lot of the information that's on it will be on the DSUK website. And that can be accessed in French or, as I say, 100 plus languages. Thank you very much, Nicola. You've been able to tell us today, as midwife, we need to ensure best practice. And in what? In the best practice, we need to be positive. We need to be confident. We need to be supportive. We need to be responsive. We need to be aware, have an understanding about Down Syndrome. And you made us to realize that a short period, a short period of understanding about Down Syndrome, as midwife, we should not be overwhelmed with everything when it comes to having a baby with Down Syndrome. Then you really made us to realize that we should give information in context, only share information that are relevant. And we should encourage the woman never to panic. Instead of panicking, the first thing to tell the woman is, congratulations, your baby is here. Thank you so much. Thank you so much for this presentation. Thank you so much. Thank you so much. Thank you, Buki. Thank you very much for the opportunity. And for anyone, do reach out and contact me please if we can help you in any way at all. So it's a privilege to be able to share my story and hopefully an insight into... It's a very thoughtful story, especially the story of Tom. Thank you. I can't take it short. If anyone wants to know, I have done a TED Talk, how I nearly terminated my son through ignorance. And yes, that gives a slightly fuller picture. And it's certainly a useful resource we find for expectant new parents, because I think often they find themselves in a place where as a new mum, you don't expect to be. And it's important to know that not to have feelings of guilt, but that you're not alone. So I won't go on again. I jump back on my soapbox. Thank you.