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Best resources for finding out more about T21/Downs Syndrome?

(7 Posts)
babybabynamechange Mon 13-Jul-15 14:26:23

Possibly not the best place for this thread but wasn't sure where was. Am 13+1 just come back from my NT scan with results of 1 in 3 risk of T21.

Have refused invasive testing and managed to wrangle a Harmony-type test out of them which I'm having bloods for on Wednesday.

1 in 3 being so very high I feel I want to know more. I know only a little about Downs Syndrome and want to educate myself. I will start with the NHS website but other than randomly googling I was wondering if anyone could recommend any good resources?

KittyandTeal Mon 13-Jul-15 16:51:07

I'm afraid I don't know of any good resources but there is a lovely poster around these boards, possibly lucysmam, who's DD has Down's syndrome. She is very approachable and I imagine will be a wealth of knowledge so bumping for you and her attention.

As far as antenatal care have they offered additional scans? I know that one of the main markers and issues for babies with T21 can be heart defects. It might be good for you, and professionals, be be aware of any heart problems before baby arrives, then you are kind of on the front foot iyswim?

daluze Mon 13-Jul-15 20:49:33

Down syndrome association. Also ARC charity can point you to the right direction for information. Both should be good places to start...

Swishyswashy Tue 14-Jul-15 14:04:17

There is a fantastic organisation called The Future of Downs, run by mums of children with Downs Syndrome in the UK. It makes everything far more personal and a lot less scary. Good luck!!!

babybabynamechange Tue 14-Jul-15 16:09:27

I will check all those out - thank you!!

Swishyswashy Wed 15-Jul-15 12:40:01

Good luck. My son has a different condition and we meet lots of beautiful babies and toddlers with Downs Sydrome through groups I do with him. If your baby does have it and you do go ahead the world is not as scary as you imagine just a little different, sometimes in a good way, sometimes less so. Good luck either way!! Hope you're feeling ok, it's a very stressful time.

SaggyAndLucy Sat 18-Jul-15 02:26:49

Hey.
My DD is 16 months and has DS. she was born with a serious heart defect which was completely fixed at 12 weeks. If I can be of any assistance I'm more than happy to chat. :-)
Ill send you a PM.
Future of Downs is a great Facebook page, I can heartily recommend it.
The DS society website is also pretty good but quite formal IMO.
TBH I probably wouldn't bother with much of the online "info", it's pretty repetitive and fairly bland. Find some good forums, check out FOD and talk to other mums. look at their pictures and listen to their stories. We're generally more than happy to chat!
I'm assuming that you will be more closely monitored given your risk, even though you have opted out of definitive testing, medics should be on the lookout for any issues that might arise and spot them quickly if they were to occur.

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