Raising Downs Syndrome Awareness

Nicola shares her experiences Of getting a birth diagnosis of down syndrome for one of her twin daughters. I’m going to be discussing what it was like for her and her family. And advice you would give to another family that might have got the same diagnosis. 

Transcript
Georgia:

Welcome to the OhShitTwins twins podcast. I'm your host, Georgia Martel. Today. I'm going to be talking to Nicola and Nicola shares her experiences. Of getting a birth diagnosis of down syndrome for one of her twin daughters. I'm going to be discussing what it was like for her and her family. And advice you would give to another family that might have got the same diagnosis. Stay tuned. Hi, Nichola. Want you to say again? Thank you for agreeing to do the OhShitTwins twins podcast. So today we're going to be talking about your wealth, your daughters. Cause you've got twin two endorses on one. Them has a diagnosis of. Down syndrome, but before we even get into that, how are you? I'm going to be talking to Nicola and Nicola shares her experiences. Nicola. Nicola. Nicola. Nicola.

audio_only_16779266_nicolabailey:

I'm good. Thank you. Thank you so much for having me. We're super busy at the moment. Cause I'm currently decorated and I I'm a nurse as well, so we've been super busy as well, working and juggling everything, but I'm all good today. Thank you.

Georgia:

So we got to, I want to just start from the beginning. When you found out you was having twins. Yeah. What was that like? Because you've got a son before.

Nicole:

I think your name sums that up quite well. Yeah. So I suffered with in pregnancy, I suffered with hyperemesis, so I've got, I've got twins. I've got Lucas as well. He was older. So I had hyperemesis with Lucas. So when I got pregnant again with the girls, it wasn't anything in common. Maybe people don't know, is it severe vomiting? Not very nice. I'm quite sick about 30, 40 times a day. But I had this weird feeling that there was something. Not quite right, like finger on what it was. And then we went for our 12 week scan and the sonographer was just really quiet. And I thought I was going to tell us something really bad. Something's something's wrong with one of the babies. And then she just turns the screen and it was on like a big TV screen in front of this. And she said, congratulations, you've got to feed my husband. We're like, Sorry, sorry. I've never seen husband. He was like, literally. Cause why is it good to thought you were going to pass out? I was like, eh, yeah. And what was really weird about these twins? Do what in my family. And when we had Luke, we joke about Luke has been a twin to the family when I ring up and I was like, Oh, it's twins. Everyone thought I was joking. And I'm like, no, this is really twins. There's two in there. So yeah, it is a bit a bit of a shock. I'm not sure. When you ever fully digest the information? Because I still don't think right up until birth. I was still like expecting more

Georgia:

looking back. I was walking around like a zombie, like, obviously, because I don't know. What type of tourists would you getting scanned more often?

Nicole:

Yeah, we got scanned more often from just 20 weeks. I had, I had never know the proper names of it, but is it die? So when they've got separate centers, there was two completely separate, but yeah. Place. But it's, I have quite a few scans and then Quinn. She, she wasn't growing quite well. So towards the end I was being scammed weekly and they came from ideally we have two weeks, winter 31. And then he managed to hold off full labor, but I was ended up being shipped to a different hospital because there was no intensive care beds. So you live somewhere else. I thought I was going to give birth miles away, but then look out. And then when I went back into labor on Valentine's day of all days, They, yeah, they had beds where we were then. So we were able to stay local, which was for a while as well, because I think about the traveling aspect.

Georgia:

Cause, cause with my situation, my girls were born at 27 weeks, so it's interesting. Cause they got separated for one week and I always think because they were my they're my first children, I was like, how would I manage, how would I manage this if I had backup a child already because it was very intensive. So I can imagine that would have been this. Excellent that you was able to be all in one hospital. So did you do the screening?

Nicole:

The prenatal screening, the prenatal screening. And again, like I said, I'm a nurse and it's not something I ever really thought about because you just, you kind of go into there and they'll say, Oh, this is the screen. And it's almost talked about as if it's just a routine thing that happens and leaflet, you don't really read the leaflets cause he'll be loose. You just go in and have you scan. And then obviously had the blood tests and we got low chance that he actually did use the word risk, which. I advocate not to use the word risk, but yeah, so we got like chants and results. So didn't think anything of it. And obviously the girls were being both screened regularly throughout the scans and nothing was ever picked up until birth. So half a week,

Georgia:

Cause I think, cause even when I started looking at your Instagram page and I was like, I don't, you know, like I had to sit and think cause I'll call. Yeah. I do remember getting the screening, but I just, you just stone think you do it. You don't think anything of it, as you said, you're given a leaflet. You don't really, you don't pay any mind. And then same as I've got, I got no choice. You just carry on with it. You just carry on with it. You don't ever think about it. So if you could just go through how. How does the health professionals, doctors, nurses present it to black whop, whop have down syndrome.

Nicole:

So again, like, obviously they were like, so it would fit and everything was an another bit to the stories, but I birthed quite quick. So this was born in an hour. So there was. I had a big chance that I was going to birth quite quickly with the girls as well. So it was all a bit of a pandemic moment. Cause there's like tons of people in the room and you've got to Don everything. So it's like full on you know, it was happening because obviously I was giving birth. They took, I gave birth to half professor Harper who has down syndrome. And so I gave birth to Harper first and the Wister to the bag. I can't even remember. That part really. And then obviously I just quit and both of them got taken over to special care and then we just sat and waited. So we waited for about 30 minutes with no news. We didn't really know what was happening at all. We've not been told that the girls were okay or anything like that. And then we had two doctors come into the room which looked quite. Sad. I definitely knew there was something wrong and yeah, they came in and said, we're really sorry to have to tell again. My first thought was one of them's died or they've both died or,

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yeah,

Georgia:

because that's when someone starts to setting this up, that is in your gut. It's common. It's linked to death. Not.

Nicole:

Like gone wrong. And then they said one of them was suspecting. One of your daughters has got trisomy 21. So again, I might have, have a, like, I don't even know what that is. I might want to trust Tennessee one. And then they said, Oh, it's down syndrome. So we've got a friend who's got down syndrome. And she said, yay. So obviously I'm thinking about her. So I'm thinking, Oh, it was so hard to like even process because for one, we've been told that. She, she got it through screening. So I was like, well, it'd been screened. I don't understand. Like we haven't got, they said it was like low chance. And, and then how, how Saudi, where I'm associated with a friend, because to me, I don't see her as that thing. And so it was very, very confusing. And then they win and then we got handed a pack of leaflets to say, this is. What down syndrome is. And I can only describe to you, the images are so out of date, the pictures are just offensive, like of what the use is an image of what a child with down syndrome is. And then you get a list of medical diagnosis that she could possibly have. So it's every worst case scenario if you've got. And then on top of that was an adoption leaflet and they went away. And no one ever came back to me. No one ever come to me to speak to me. Like, have you processed that information? How do you feel about down syndrome? Do you want to tell it to anybody because you can have counseling, which I know that now I didn't know that at the time, since I've done a lot more usage to it, but no one offered me any genetics counseling or anything like that. Parker did have to have the test in, so you have to have proper blood tests and they're only going off. The markers of why the suspected down. So I'd look up toe and Palm crease and all that sort of stuff, eyes. And then three days later you get taken into another room, but again, being a nurse, I know what room the taking you into the team, breaking the bad news room. And I'm sort of like, and it's not really, but it wasn't ever, it's hard to say, like at the time I felt like it was bad news, but again, I think it was how it was handled. Made me think it was about news. Looking back now. If I'd known what I've known now, it would have been a completely different process. Cause I almost like grieved Harper, like, mm. And

Georgia:

your faults, what you thought your twin mom experience was going to be you more than that? Not your. Not your, obviously not your actual title office. I'm sure that you had an emotional battle in the beginning. But as you said, this is the language that's used. How old are your twins? It's not that long ago. Yeah. They're

Nicole:

just turned three, right? So the three now, so yeah, it's not that long ago. Yeah.

Georgia:

So do you, do you know? Yeah, I can. I can imagine. What do you know the leaflets that they gave you? Are they still being

Nicole:

used? No. So the hospital that we gave, the thing I used to work at that hospital as well. So I have worked quite closely with the hospital because I have had, well, the incidents in the hospital when we've had to take Harper where discrimination has happened, language and things like that. So I put in a few, do you know the pals when you write to the hospital to tell them? So from that they've invited me in. So I actually now do. Talks to the hospital and talk to doctors on how to, Oh, that's amazing. We worked together to put more informative leave. Let's let's say it's again, even like through the screening process, people sometimes think, well, we're advocating that you shouldn't be screened. And I'm not saying that I think people should be screened because if you do have a diagnosis of down syndrome in screen, and there's a lot of things that there's a lot of risks with having a baby with down syndrome, that they can have extra checks and extra monitoring. So I think speed is really important. But at the moment, if you do do screening, it's almost, you screened. If you get a down syndrome diagnosis, you answered with abortion where it could be a balanced argument should be given parents both sides. These are the negatives, the down syndrome. These are the positives to down syndrome. You make your informed choice rather than just given him information of all the negative. Yeah. It's not, it's not balanced, but that a particular hospital is working. Towards change. And a lot of that, and I speak to a lot of the midwives there as well, which is really

Georgia:

good. But the sad part of that is of course, is that trust to trust. It will be this total is totally different because you're doing your bit. And that's amazing that you've gone back and given them the feedback and they're open to taking it. It's then what's happening in, in every other hospital And if they're still using these outdated leaflets

Nicole:

do you have down syndrome? I think like, even in my media, I think there is a massive misconception of what down syndrome is. Yeah. People have said it even to myself. Like I didn't fully ended up because we've got a friend, but I didn't fully understand what down syndrome was and what that means to a child. And I also think there's a lot of. Word and language that's used around children with down syndrome that eats the conditions first. And it shouldn't be like that. They're a person rather than not a condition. They're not a type of person people talk about. And it's like almost aliens. Like she's not a down syndrome. She's a girl with down syndrome. There's a computer difference in that

Georgia:

for them, that language. Okay. So how was it off, of course you got the diagnosis. Once it was confirmed and it took you to the breaking bad newsroom after that emotionally for you, how was that? And how would you, what kind of advice would you give to S to a mother that. Got a dog birth diagnosis and just how to process it or any tips. Really?

Nicole:

I think, again, again, it's hindsight, I think in some aspects we all need to go through that grieving process. I think it was helped. Like I had massive difficulties in the early days bond doing Harper. I do want to hold her because again, how they sold. Dawson gentlemen, I thought you were going to die. So I'm like, I don't want to be attached to her because she's going to die and all that sort of stuff. But you've got to remember that. She's just a little girl. I just like when sister was, and she just exactly the same and people always asked me like, what, what needs does she have the different, she doesn't, she doesn't have anything different. Like I said, our profit Quinn, like she just does things a little bit slower. So I think going home and enjoying that baby, because. I think that's what the diagnosis takes that away from you. Like, I feel like I missed the early days with heart because I was in this like grief process. Whereas I should have been absorbing all those little babies snuggle and worried about everything that the diagnosis brings with it because. Like I said he has, it's just enriched our lives, having her. And I wouldn't change anything about it. I think if you took the extra chromosome away from Harper, she wouldn't be who she is. And she's just the funniest little thing. And she brings so much joy and happiness that I wouldn't want to any different, like issues. Who she's meant to be.

Georgia:

So once you got that diagnosis, is there, where did you go to find your information and your support obviously, the information you initially was given is very negative and make any, you know, think the worst, worst case scenario, rather than let me enjoy my, my beautiful daughter.

Nicole:

So we, I talked to social media originally. I documented a little bit of my pregnancy, but again, because I wasn't very well throughout, I didn't do a good job of documented a twin pregnancy. I thought it was going to give a good opportunity to share our story in terms of to two children, the same age growing up, but to show the differences between them. And then when I started on social media, I found more and more people and I found the best support was. People who've been there before people who've got children, who've got down syndrome. You've got that connection. So I started doing a lot. Is. Online, just chatting to moms and we still do that. I've got group chats going on and it's still things happening to one of them, like just digitals do this. Like what, like, cause a lot of the things you over question. So I questioned a lot of things. Like, is it because she's half brand she's Harper? Is it the cost of the down syndrome? And yeah, I think it's always handy to have those little groups and supports. And then another one was support groups in the community. So our local area has a support network. We used to go there before COVID times of COVID every month and meet up with people, all different ages. You've got down syndrome as well. So. That was a really big support as well for us. And there's a lot of online charities, so positive about down syndrome and wouldn't change a thing where some really helping charities that helped us have got really amazing advice, useful factual advice around down syndrome as well. Okay.

Georgia:

And then now of course of hop is three. So I saw on your Instagram that she's needed a operations was that a result of her diagnosis.

Nicole:

Yeah. So there's a lot of associated medical conditions linked with data. And again, the not, not, everyone's going to have a mess. Harper unfortunately had the heart condition that's linked to down syndrome. So she had an AAV canal defect, which is basically two holes in the heart that makes it looks like the, the middle of a heart is not there basically. So she was supposed to have surgery. Really early on at eight weeks old. But by some miracle, the bottom hole healed a little bit. So she managed to get to two and a half. Cause they're like quite a bit bigger to do heart surgery on them. And so last September, she had open heart surgery which was the most difficult time I think, because again, you've got the pandemic happening. You're going into a hospital where, you know, there's COVID, there was an imminent lockdown about happened in that area where the hospital was. I had to go in alone, my husband couldn't be with me and I suffer with health anxiety too. My son because he was ill at birth. So I had a lot of all these things like going off in my head, but little Harper bless blesser had the hope had heart surgery was home in five days. Just like bounce back.

Georgia:

It's amazing. It's honestly children just how resilient they are. And it's just this, it's amazing. It gives you, you struggle sometimes because you're sitting there worrying and they're just like, Hey,

Nicole:

you've had a whole surgery. At home. And like five days later, she's like running around with like twin sister and I think a conflict she just had like, literally open hearts, like his heart's been stopped and she's just there let's play an amazing really. So,

Georgia:

Just day to day life, how, as you said, of course she's a growing toddler. Same probably likes the same or similar things to her sister, if. What is the kind of thing that you want people to know who might be that diagnosed and just might be thinking to how, how am I going to cope with this? Because I just feel, cause I looked like, obviously I've done my research before I'm you? And I was even shocked when I found some of the leaflets and it literally was, it just felt like you read in Denton that worst case scenario all the time, other than the joy and, I could say, I could see how it could Rob you of that joy of being a parent. So I think India,

Nicole:

like I said, in the early doors, I think once you've got over, like the initial grief and I found it then, because you get all this information about. All these problems that we're supposed to have you leave the hospital, you then dealing with that information and then nothing happens. So I'm like thinking she needs to have physio and she needs to have this. And they're like, no, she's not going to have that until she's one. So we've got a massive gap that nothing happened. And I just. Muddled through at home. Like we were quite fortunate that Harper didn't have any massive like swallowing issues because some children would ask to kind of swallowing issues which can affect weaning. We didn't see any of that with Harper. So I just, when we enter the same as Quinn she needed a little bit assistance in sitting up because again, cause a low tone, she didn't sit up. So she did everything the same as her sister, but just a little bit delayed. But yeah, but like our day-to-day life now we do have therapy. So Harper does have. Help with things like speech and language because the speech can be a little bit slower to develop. We did have dieticians cause she didn't gain weight sufficiently, but that was particularly linked to a heart. So since she's had a heart surgery, she has been gaining weight quite well now, and then we have. Physiotherapy. And we got some private funding from children in need to get some conductive education. So it's kind of like a physio, which is predominantly used with children with cerebral palsy, but there were some studies being done to say that it helped children with down syndrome. So we went into our local, want to be a participant of seeing what, how, what happens with the child with down syndrome and Harper progressive really, really nicely with, with that and got her in when from having that. So that was amazing. But then again, day to day now, We have had adaptations and little bit. So like, we we've got like signing cards, like have like Makaton to do baby sign. With Harper and, and we use picture cards quite a lot throughout the house, but we've kind of just, it's our day to day now. Like it's there. Cause a lot of people think, Oh, it's a lot of things to do, but it's not because we just do it. It's routine to us. Now, like if we ask him if she wants to drink, we've got a little drink chart for her to pick if it's milk, juice, water that she wants, because she can't tell you which one she wants. So it's just those little things that you just adapt, but day-to-day life is exactly the same as. Everybody else has really, and she likes the same things as a sister does. She's got a very much more calm temperament than a sister, which again is quite helpful because I don't think I could cope with two Quinn's either. But but yeah, so yeah, she's just the same really day to day.

Georgia:

I saw on your page about Makaton. So if you just, for people that might not know or might want to do research or give it just a little bit info on what Makaton

Nicole:

is. So ma Makaton is basically a form of sign language. But it's, so when you're doing sign language, you would sign out every single word. So with Makaton time, you're signing the key word. So we learn a lot of objects such as. Drink, bath, toilet, things like that. And she might use learn the sand for more and things like that. So like, again, if she wants something, she can't physically speak it, she comes signing and a lot of people worry about signing cause she can start signing with children from six months old. And it's beneficial, not just for children with disabilities, but children in general use frustration and aid communication. But what happens is you'll find that once they start being able to say the word. They drop the sign. So like now Harper can say more. It's very, we don't see that sign that often, which she used to say more all the time for the food, because she loves the food. But yeah, she don't do that anymore. Cause she can say, can say it.

Georgia:

Okay. So. What is, what is your plans? Just like moving forward, generally, just as a whole family. I know the pandemic a lockdown is driving us all crazy. And it was anything you're looking forward to any plans that you've got as a

Nicole:

family. I think again, it's a bit difficult for us at the moment, because with Harper, we've got we've shielded and again, if she can't have vaccines, so I'm still in the worry of. How does that impact you as we come out? We've all been vaccinated now. So our role we're all safe, but you're sort of like, I don't know what that means to the heart because obviously Harper could still potentially catch it where I suppose the girls were supposed to be starting nursery March, but that told that back because again, the risk to Harper is not. And we can't risk that, but I'm looking forward to, and both start initially in September. Cause I think that's a good thing for them, because again, they're not seeing the children for like a whole year, I took, went out for the first time, at the weekend to the shopping center and she's not been out and a little phase for like, we're going to a theme park.

Georgia:

Amazing. Wow. Wow.

Nicole:

And when we booked a holiday, it's only like local, but again, we're looking forward to going on holiday and continuing to raise more awareness. That's like, I, I do my Instagram to continue to raise profile of what down syndrome is, and it's an amazing platform to be able to do that. And I hope I can still continue to share our lives and show people that down syndrome is not that scary.

Georgia:

I forgot to ask this earlier, but what type of down syndrome does, does hopper have.

Nicole:

So there's, I don't know if you know, there's three types of down syndrome. A lot of people don't know that there's more than one tax, so Harper's got, we always call her a bit common. So she's got the common tax. So she's got trust to me, 21 which affects around about 96% of people with down syndrome. They are older, so there's translocation and mosaic, but they're more. Rare compared to trust two 21. So yeah, she's just got the common type.

Georgia:

With the hindsight that you have, would you say to yourself when you've got that birth diagnosis?

Nicole:

So I would say not. So worry not to be feared. We always say don't judge a book and I think them handing in his leaflets, you judged on what you read. And I think from that, and I should've just listened to my heart and just seen that she was just a little girl and I think that would have made it so much better. And that's why I always say to new moms, like don't. Focus on the down syndrome because that's not the whole of it. It's just a part of the, yeah, that's the main thing.

Georgia:

My last question. Do you know if, cause obviously he said that down syndrome awareness 31st of March, but do you know if there's any, you know, more push. For, you know, the leaf that CV updated across the board on the NHS. Because as I said, you know, you, your, your twins are just three years old. That's not that long ago to be given such outdated information and, and the world that we live in now. So do you know if there's anything happening in across the board to try and make that literature better? Yeah,

Nicole:

there's lots of things happening. So there's a couple of charities that I mentioned earlier, so they both work avidly. So up and down the country, we're trying to get new leaf, the packs, and they are in a lot of the hospitals now that you wouldn't enter thing leaflet. And there's a lot of doing things locally, where they do little gift baskets. So if you've just been given a diagnosis to douse and gender have hand written a letter to tell you about their child or someone else. And there's a lot of campaign in as well, like at the minute because the laws around down syndrome are still. Very much outdated. Like I was saying the abortion law that a lot of people don't know that you can abort a baby with down syndrome right up until birth.

Georgia:

I didn't know when you said that. I was, well, I had to Google cause I not, I was like, how do you. Oh, okay. Oh yeah. Well, I don't even understand how that's even legal. Like how is that even? Okay.

Nicole:

How can you, I think it's probably far out, like so far out a day, because if you link it to that law, that law is talking about that the lives are going to be severely impacted. And that's why they're saying you can have an abortion right up to birth. And I think. In the 1970s as a child for down syndrome, didn't live predominantly till up until they were about 20 and then they'd die. And that's what they're saying, but that's because they weren't allowed to have heart surgery. Now they're allowed to have heart surgery. There's a lot of people with down syndrome living into the sixties. So was sort of like the lifespan is not. Much shorter than a typical person's lifespan is. And obviously they lead fulfilled lives. Now when they work, they go to school and I think a lot of it used to be outdated and I just don't think the law has been updated in the, it should be the abortion law for. A child with down syndrome should be in line

Georgia:

with that. There should be it's too, but I just, honestly, I just thought that was always across the board. I've never heard anything like that. I literally had to go and Google. So that w w how, how is this even

Nicole:

lip as well is on there for that? And I was like, cleft lip. Yeah. That's. It's on there. There's also something.

Georgia:

So, so out of date, but, okay. But thank you so much for your time. I know you're credibly busy and it's crazy times right now. I do decorate as well in the middle of it. But I appreciate it. I just want to say thank you for coming on the podcast.

Nicole:

No, thank you for having me. I think you've let me share my, my little story as well. No worries.

Georgia:

Thanks for listening to the OSHA twins podcast. You can find me Georgia Martel at OSHA twins on Facebook and Instagram. And my website is OSHA twins.com. I'll be posting new episodes once every two weeks. And in the meantime, you can like comment and subscribe.

About the author

Georgia is a mother who has decided to live out loud after motherhood took the wind out of her! From finding out she was going to be a mother of twins, then them being born at 27 weeks (two and a half months early), it was a rollercoaster but sharing the whole experience on platforms such as Make Motherhood Diverse has reminded her that she wasn’t alone despite not feeling included in the mainstream vision of motherhood.
Georgia regularly shares the realities of being a mother of twins on her Instagram page while still craving her own piece of the world. It’s a mixture of meltdowns and giggles and Black British Motherhood in all its glory.
Georgia has a background in beauty as a qualified make-up artist and eyelash technician. She ran a beauty business providing pamper treatments for private and corporate clients, and has also worked on a multitude of events including influencers book launches for Zoella and Tanya Burr, and brands such as Wilko and Pixi beauty. Despite her love for beauty, she is fully aware of the lack of diversity and poorly executed campaigns when brands want to appear diverse.

Georgia is a confident communicator and loves to chat about all things motherhood, womanhood and diversity (or the lack thereof) in the media and beauty world, all from a Black British Londoner perspective.

Feel free to contact Georgia via the contact page.

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