1/9 chance of Downs. Talk to me, please?

[numberthirtytwoWindsorGardens]

My screening has apparently come back 1/9 chance of Downs. This seems incredibly high to me.

I don't know much about Downs; I know it's a spectrum and some children live very happy and fulfilled lives, but that it can result in serious health problems. I'm very afraid of making DS a carer, and of having a child I can't cope with or who can't live independently without us.

Can anyone advise?

Hello.
I had 1/2 chance and opted to have a CVS. I think it is easier to decide on future if you know one way or another. Obviously not everyone wants or needs to do further testing so it is personal choice.
If you don't mind me asking - how old are you? Age can screw the results quite a lot. Do you know what you r NT measurement was at
The scan.

I believe the biggest health issue for babies with Down's syndrome is heart defects so they can often need a number of heavy surgeries in the first years of life however many go on to live very very happy lives and although they do need additional caring needs they can also live fairly
Independently

Thank you for your reply I'm 34 (almost 35). That makes it feel worse - if age isn't a risk factor, it increases the likelihood that it's right?

I've booked in for a CVS on Monday, but I think I'd like to feel a bit more prepared for what to think or do if it comes back positive.

I’ve taught children with DS and as you said it’s a broad spectrum. Some will always need 1:1 care for life, some could live independently and hold down a job. What I have seen evident in every case though is they bring their families so much joy.

I don’t think anyone is going to really be able to reassure you. But any child has the possibility of having learning difficulties, autism, health conditions etc that could affect them for life. There is no guarantee anyone is going to have a 100% healthy child.

I was 34 too! My 1/2 chance came back al clear
After the cvs. My
Baby is 8 months healthy and happy.

I think my advice would be wait for the result. Don't stress about something until you know. If it comes back that the baby does have done syndrome there are lots of resources online. I think ARC has loads of great info on.

Most importantly remember it is your life, your body and your choice so you do what is right For you and your family and if anyone in your life
Can't understand that then boot them out of your life. That's not just in relation to termination that's also in relation to being overly opinionated or negative should you wish to continue with the pregnancy if they baby does have downs

I had a 1 in 12 chance and I spoke to the ARC helpline who were really helpful www.arc-uk.org/

Wishing all the best, it’s a stressful situation to be in xx

My friend has a 20 year old with downs, she's at community college currently (USA) and lives in the dorms. She wants to direct movies (and has made short films). She'll need some oversight but not full care going forward, she can look after herself (self care, food) but is naive with money etc

Thank you all so much for your replies, I'm really grateful.

I really don't want DS to have to be a carer, and I'm not sure DH would forgive me if I said I wanted to go ahead, but - it's my baby. I saw it moving during the scans. I can't bear the thought of terminating.

Virtual 🫂 hugs. Cannot imagine the anguish you are in, difficult choices to be made

You might also want to check out positiveaboutdownsyndrome.co.uk - they have information and stories about living as a family with a member who has Down Syndrome.

Thinking of you and your family. 💜

Thank you all very much, especially for the resources. I'm really glad your baby is well, @Fredsgirl19.

It's not technically correct to say Downs is a spectrum condition - a person either has it or they don't, and there are some characteristics that all people with Downs share. Happily, heart defects are not one of those guaranteed features. My brother has Downs and is a strapping, healthy, handsome lad.

The level of learning disability differs too, my brother's is very severe but in many ways his care is much more straight forward than that of his peers, he has no 'behavioural' issues or anything like that, he's just an easy going, joyful person to be around.

I'm not trying to influence your thinking (I believe in a woman's right to choose, always) but his impact on me as his only sibling is certainly not negative either. He's the core of our family and brings us together in a way I think people outside of the Down's community can't really comprehend. It's an established fact that many people with a disabled sibling go on to work in the caring professions such as health, social work, education etc - which is certainly the case for me and many other siblings I know. I wouldn't be who I am or the success that I am without him. Plainly this isn't the case for everyone, but this is my lived experience.

I was 1/15 and came back clear. We'd decided to terminate if positive as didn't want the impact on our first DD. It would one hundred percent have been the right choice for us. As it was, CVS was clear.

Thank you, @MargotEmin, that's really useful. If you don't mind my asking (and please ignore this if it's intrusive) how has your family found accessing support for your brother? I hear so much about how badly welfare services have been cut, and I really fear not being able to access proper suppot for a severely disabled child.

I had an amniocentesis which came back fine. DD is 18 and doing very well.

I was clear that I would have terminated the pregnancy though.

I already had DS and I didn't want to risk his future. When I was a TA one of the children in the class had a brother who had Downs syndrome. He barely got a look in with his parents. They were so focused on his brother and getting help for him that they were exhausted.

Also my DS wants to go and work abroad if he can. I wouldn't have wanted him to feel that he had to stay because of his sister.

There was a thread on here several years ago. The OP resented her parents assumption that she would take over the care of her sibling when they died. Lots of other posters said the same.

I would echo @MargotEmin I have a brother with DS. And would echo the comments made- and interestingly I am also in social work! My brother is in supported living now, he loves it- there is someone there all the time but he is learning so many new skills! The support has always been a case of advocating, being persistent, but he’s never not got what he has needed. We’ve had a couple of occasions whereby we’ve felt uncertain about if things will be funded so we’ve come together as a family and provided social care with a comprehensive over view of his needs, he got what he needed :)

If you want to PM from a siblings perspective very happy to chat.

Best of luck x

My dbro has a disabled child (not downs) and you are right that support has been extremely lacking. Dsil had extensive scanning in her two following pg and was very open that they would terminate if there was a recurrence of the condition.

Sorry you have this worry on your mind OP, you must feel overwhelmed. I have a friend who’s second child was born with DS. She refused testing, as she decided she was having her baby anyway. You need to do what’s right for you and your family OP. Good luck

The ARC charity - Antenatal Results and Choices are great to talk to. They are completely neutral about what action to talk and provide a supportive listener and good information on the testing.

Action to take I mean

Sure, no problem, OP.

This sounds awful but I've always said if my brother has to have a disability, I'm glad it's such a visible, well known one as I think that makes it a lot easier to access services (my brother probably has a better care plan than some of his peers who have greater needs but the actual disability is hidden if that makes sense?).

We had an excellent social worker for most of our childhood who sorted all sorts of stuff for us. The only thing that was really tricky to access back then was speech therapy as there seemed to be a time when it wasn't very 'fashionable' and makaton was being pushed instead as it was the 'in' new thing. I'm not sure if that's changed now.

In adulthood we haven't always had a consistent social worker but that hasn't really hindered his access to services so far. If we need anything they send a duty worker out and it's usually fine.

That's not to say there haven't been struggles - but to date none have been insurmountable. There would be struggles and sacrifices if you were supporting a child to go to a top university or to become an elite athele, that doesn't mean we don't pull together and tackle it.

I'm not sure I recognise the PP's worry about her child not being able to work abroad. I've spent time working abroad and even now, as someone who is very active in the care of my brother through choice, I live several hours/ counties away.

I had 1 in 17 chance of Downs with DD. We had discussed before I got pregnant what we would do in that situation. Luckily, after having a NIPT the chances came out at 1 in over 50,000 and DD was born nearly 2 years ago very healthy.

I'll keep my fingers crossed for you. Its a horrible worrying time waiting for the test and then the results.

I detached myself from the pregnancy during the wait for the results and had a bit of a tough time 'reconnecting' after we had the good news.

@MargotEmin I meant that it would be difficult to liaise with social services and keep an eye on a care home from Australia.

When my grandmother was in her 90s and had a short stay in a care home after coming out of hospital it was my mother and I who dropped in and kept an eye on what was going on. Inappropriate food, dirty towels, phone not accessible etc. My uncles in Asia and America were unaware of all of this. You have to see things for yourself.

I mentioned Australia because a lovely colleague met an Aussie dentist in London in her 20s and went back to Australia with him.

Her sister needed permanent care which was provided by her parents. Not an issue when the girls were in theirs 20s and parents in their 50s.

But I think of her when these threads come up, now that we are in our 50s. If her parents are still alive, still having to provide care. Or if she has felt obliged to come back.

I would not have wanted DS to feel that obligation.

DC can be born with disabilities that we can't screen for, or things can happen during their lives that leave them needing care.

However I didn't want to make an active choice that would have left DS with that potential burden when we died.

Hi @numberthirtytwoWindsorGardens.

I got the diagnosis for my daughter’s Down’s syndrome postnatally and it came as a massive shock, as my combined test results had been a one in 1900 chance and nothing was picked up in my scans. However I am so glad we fell through the net during pregnancy and I didn’t have to make a decision then, as like you, I knew nothing about the condition and possibly would have been scared into termination...

But nearly six years on, my daughter is absolutely amazing. She sat at 8 months, started to crawl at 14 months and began to walk shortly before her third birthday. This year she started reception at a local mainstream school and despite the various lockdowns her language skills have increased massively and she’s now putting more and more words together, bolstered by her brilliant signing which helped her hugely in her earlier years. She is easy going, clever (can count to 14, recognise letters of the alphabet and around 15 words now) and has the most wicked sense of humour, and a fantastic relationship with her 3 year old sister. When she was born, the consultant rattled through a long list of potential medical complications - all of which she’s bypassed (aside from some initial feeding issues - but she went onto breastfeed until she was 2!) but the children we know who have experienced NG tubes, heart surgery, bowel problems etc. are doing fantastically a few years on, despite shaky starts. I also know of quite a few teenagers and young adults through the various local DS groups I’m involved with, and they make me full of hope about my daughter’s future and prospects.

Do have a look at www.downs-syndrome.org.uk - they have a great section for expectant parents as well as a list of local support groups. Another good website for reading the experiences of a really diverse group of families is www.positiveaboutdownsyndrome.co.uk and the photography project my daughter has been modelling for also contains a lot of testimonies (as well as some truly beautiful portraits of children and young people with DS 🥰): downrightamazing.co.uk

On Facebook, as well as the amazing support group Future of Down’s, there are some really great blogs:- do have a read of ‘Don’t Be Sorry’ and ‘I am River’ for some honest, uplifting but not sugar coated accounts of family life. I hope all this has been of use to you, take care, I know this is an agonising part of pregnancy, but really, don’t be afraid xxx

@MargotEmin

Sure, no problem, OP.

This sounds awful but I've always said if my brother has to have a disability, I'm glad it's such a visible, well known one as I think that makes it a lot easier to access services (my brother probably has a better care plan than some of his peers who have greater needs but the actual disability is hidden if that makes sense?).

We had an excellent social worker for most of our childhood who sorted all sorts of stuff for us. The only thing that was really tricky to access back then was speech therapy as there seemed to be a time when it wasn't very 'fashionable' and makaton was being pushed instead as it was the 'in' new thing. I'm not sure if that's changed now.

In adulthood we haven't always had a consistent social worker but that hasn't really hindered his access to services so far. If we need anything they send a duty worker out and it's usually fine.

That's not to say there haven't been struggles - but to date none have been insurmountable. There would be struggles and sacrifices if you were supporting a child to go to a top university or to become an elite athele, that doesn't mean we don't pull together and tackle it.

I'm not sure I recognise the PP's worry about her child not being able to work abroad. I've spent time working abroad and even now, as someone who is very active in the care of my brother through choice, I live several hours/ counties away.

Nowadays Makaton and speech therapy go hand in hand - speech therapists work equally on encouraging signing and vocalisation. It can be a real postcode lottery as to what is provided by your local health trust, but charities often fill in the gap. We were really lucky that our local Down’s syndrome charity offered weekly excellent speech therapy, as the NHS preschool offer was a bit crap to be honest: Cara got 2 ‘combined group therapy’ sessions a month, which was an hour long session including SALT, occupational therapy and physio, so the therapists never really seemed to have time to get started properly. However, now she’s at school, the SALT she receives through the NHS is much much better, albeit obviously having to be done through MS Teams all this year. Cara’s speech has come on massively over the past year (no doubt helped by playing with her little sister and school friends) but Makaton was invaluable as a toddler for supporting her communication and she had over 100 signs at one point, although she doesn’t need to use Makaton so much now.

Thank you @curliegirlie - your daughter is absolutely beautiful and I'm so happy she's doing so well. To be honest, I wish we hadn't been picked up - I was saying to DH last night hat if we had just had a baby with DS, we would have made the best of it. But I do feel really anxious about making the decision, as @whiteroseredrose says so eloquently, to actively give him that responsibility later in life. Thank you for the resources x