Down Syndrome

[Chris77]

I just got back the results from the combined screening. There is a 1/110 chance that our baby will have DS. We've declined the amnio but will just prepare as if the baby has DS. I'm looking for support on what to expect with a child who has DS, what books are good to read, etc. Does anyone have any experience with this?

Thanks.

 

[JASMAK]

Remember, that means that means that if you have 110 women in the room, pregnant, 109 of them wouldn't have Down's. Pretty good odds. No advice, my child has autism, but I have only heard good things about babies/children with DS...very happy children.

 

[Marleysgirl]

When we received a high risk score (1 in 5), I found the information on the Down's Syndrome Association website very informative: https://www.downs-syndrome.org.uk/information/being-pregnant.html

It's true about the odds though - we were in the 80% rather than the 20%.

 

[Canada8]

Docs found a white spot on babys heart at 20 wk scan. I did an IPS and all results are normal, but this still has me a little worried. Has this happened to anyone?

 

[kit10grl]

Hi, were in the same boat. Weve been given a 1:144 chance. We aslo declined the amnio.

Havent seen any good sites myself yet so stalking for other peoples suggestions but i have spoken breifly to a mum with a downs child (she runs our baby sign class) and today someone asked her why she got into baby sign and she shared it was because of her daughter and how she knew that she would develop vocally slower than an unaffected baby. We didnt get to chat long as class was finishing up but it lifted a huge weight off my mind to talk to someone IRL who is so happy and positive who lives with downs. Helps mebelieve just a bit more that if faced with the situatioon we WILL cope

 

[Tegans Mama]

I don't have any personal experience with a child with DS, but I wanted to offer my support. There is a child in Tegan's preschool class who has DS and she is lovely. Very friendly.

The page Marleys Girl shared is very good. I also wanted to share this blog, which a lot of parents of children with all different kinds of special needs find inspiring. It is particularly relevant to parents of children with DS though since one of Kelle's girls has DS.

Also, not to be offensive, but something you will find if you (g-d forbid) do have a child with any disability, most parents prefer to refer to their children as a "child with ..." (whether that be DS, Spina bifida, etc), rather than a "downs child" or a "spina bifida child". Again, I'm not trying to offend, but most parents like to classify their child as a child first, and put their extra needs after

 

[Midnight_Fairy]

My god daughter is a child with Downs syndrome and is a pleasure to be around. A little angel xx

 

[FunkyVine]

our little Kimberley has Down Syndrome.. she's 10 weeks old. She also has a heart condition which will need surgery. Try to meet other families with a child with Down's - it really helped us
If you clisk on my name and public profile you can see a little pic of her

 

[Mummy of Ange]

We are in the same situation, we had an increased nuchal fold at 20 weeks, 7.2mm then 7.4mm, no other defects found. We went back 4 weeks later and nuchal fold was 4.7mm and no other markers.

We had our final scan on Tuesday and she is in the 98th percentile for growth, also her femur measurements have always been ahead which my midwife said is a good sign.

We refused the amnio, i would keep the baby no matter what, so here we are waiting it out and im a nervous wreck. Its the not knowing.

Loads of people have said a baby with femur bones in the 98th percentile would very rarely have downs but i still have the what ifs

 

[FunkyVine]

Chris - try the Future of Down's website. There's great people on there

Also in your area there should be specialised support for children with Down's, and other 'special needs' so try to contact them maybe through children's services at the local council. We got loads of great support before she was born!

 

[lottie77]

Hi there my risk ofhavinga baby with Down Syndrome was 1 in 28 and I also declined an amnio and my baby was that 1 , I read and read every bit of info I could from the net and from books etc etc but none of that truly prepares you for thr shock of your baby being born with downs , then you realise that its not as bad as you think and that your baby is just that a baby , the advice I would give you is not to read up too much because it just scares you unessasarily , I though my baby would be ill , be a vegetable etc and what a load of crap , she has zero health issues and is as bright as a button with amazing language skills and she has a wicked personality to match her wee cheeky grin and at 16months is wearing age 2to3 clothes because she is very tall so there you are all the so called traits of down syndrome must have missed my daughter there will be problems as she ages I am sure with her learning/understanding , maturity etc but I couldnt care less she is my daughter and I wouldnt change her for the world

 

[FunkyVine]

lottie77 - so so happy to hear about your little girl. I've been reading some inspiring books about children with Down's - it really helps you see that these unique people can achieve a great deal and even beyond their 'normal' peers!

 

[Marie000]

I'm glad I found this thread.

I am also at high risk of having a baby with Down's. Based on one blood test (I missed the second test, and they didn't do the NT scan), I was told 1:10. But they got the dates wrong on my paper (by 6 days, not much, but maybe it makes a difference )
I've also declined to do the amnio. We were going to keep the baby no matter what, so I wasn't comfortable with the risk or the amnio.

Glad to hear about other's experiences. I still get worried sometimes, and I wonder if this will make me more nervous when she is born.
But we'll deal with whatever our little girl brings with her.

FunkyVine - Your little girl is adorable! I hope her surgery goes well.

 

[FunkyVine]

I prefer to say there's a chance of having a baby with Down's - rather than a 'risk'
She's doing well and had her cardiac surgery last Wednesday at the Evelina children's hospital in London. Surgeons and nurses are excellent. There's so many 'heart' babies here it's incredible... little lives being saved every day!

 

[Marie000]

I prefer to say there's a chance of having a baby with Down's - rather than a 'risk'

Sorry
The thought of having a baby with Down Syndrome still scares me. I'm sure I'll love my daughter once I meet her, regardless of any extra chromosomes. But for now, Downs Syndrome is still faceless, and seems like a series of obstacles that I do not wish on my baby.

I'm glad to hear your daughter's surgery went well.

 

[anna_xx]

I don't have any experience personally, but I read this blog about a women who has a daughter with DS.

Heres the link: https://www.kellehampton.com/search...-max=2013-01-01T00:00:00-08:00&max-results=50


xxx

 

[FunkyVine]

there's a great facebook group called 'future of down's' - and also a website with the same name for anyone expecting one of these special little people! x

 

[TFSGirl]

One of my favourite people in the entire world is my friend's younger brother who has Down's. He is amazing. Such a funny guy. His health problems mostly relate to his hearing, which has affected his speech a bit (he stutters) but beyond that he is incredible. He just moved into his own apartment last summer, and whenever his parents call he just gets annoyed and tells them he is fine lol I absolutely love him. His mother founded a lot of agencies in our home town relating to Down Syndrome and the entire family is just amazing.