32 weeks pregnant and given high risk of baby having down syndrome advice please

[razorlight]

hiya everyone, i am 32 weeks pregnant with my 4th baby, i am 30 years old and was given a 1/140 risk of down syndrome after my triple blood test - which i got back at 22 weeks. i refused to have an amnio because it would back no difference to me and i could never even consider a termination. I would like some advice from mums who have children with down syndrome - if your child's condition was not diognosed before birth - how soon did it become apparent? did your baby look so different that you would not know without a blood test? or was the syndrome obvious from word go? did your baby get taken away straight after the birth to special care? (i'm guessing this is dependent on each individual case, heart defects etc?) also i would like to chat to anyone who has breast fed a baby with down syndrome - i have heard that this is hard to do? Any advice would be a great help, thanks!

Mr Graceifer, Many congrats to you and your wife on such a lovely baby. He is very gorgeous.

Dino you can email to me and I can forward on if you want (if the CAT still doesn't come through).....

oooh MrGraciefer seems a good place to mention Piscies- disabled swimming club- can send you details for the future if you want, we've found it great- quite a few kids with ASD go (no-one bats an eyelid at ds1 doing his stuff) (and quite a few teens/adults with DS). Also the changing rooms can be mixed etc if necessary which can help. It's very friendly and there are a couple of helpers who will lend a hand when needed.

Thanks for that Gess, I would most certainly would appreciate some information on that, DS1 loves swimming (his favourite thing at school as well) and I would DS2 to become just as confident.

Also if Dinosaur wouldn't mind taking you up on that offer, that would be great also. Not sure if you are supposed to recieve an e-mail when someone C-A-T's you, but if that is the case, we haven't.

Just back from hospital and they said Grace and DS2 can come home either tonight or tomorrow, depends what time the consultant can do the second heart scan, as he isn't on call until this evening.

So I am well chuffed.

Hi

My ds3 had a similar high risk to you. he doesn't have Downs Syndrome. he does have ASD, which is completely untestable for! I think people forget the syndromes thatc an't be tested for, when they make decisions.

we also chose not to have Amnio, and ended up regretting having the blood tests done at all as far from leaving us with any sense of preparedness (I will mention I have nursed so I probably had a different starting point than many people), the completely ambiguous risk factor just left us panicky with no real plan. We weren't advised against our home birth or anything on the basis of the risk factor.

Am expecting DC4 in April and have completely opted out of tests as I already have 2 sn ds's (and an NT one) and just don't see the point of the stress, the biggest risk to us is asd and that'll take three years for the risk of regression to pass.

Good luck with your pg, you sound pretty speacial. And Graciefer- congratul;atins! What a cutie

CAT just arrived, thank you Dinosaur.

Grace will be in contact soon.

Congratulations on the birth of your cutiepie ds2 Graciefer. Glad to hear he's on his way home soon.

Aaah - congratulations, Mrgraciefer and Graciefer - he is a darling!

MrG - have you come across the STEPS website? Lots of practical info and parents supoprt re LLD (lower limb disorders) including talipes.

Razorlight - sorry to crash your thread! I do remember TC writing about how she came to the knowledge that her dd has DS - but I can't find it.