Info on Downs - where do I start?

[Elvis]

My friend has had a baby today that has Downs. She doesn't live in this country, so I don't need any details of UK support services, but I want to be there for her and do the right thing to support all the family, they have 3 other children.Can anyone recommend a website that I can use to educate myself I'm realise I'm actually very ignorant about Downs and need to get myself up to speed asap. All assistance gratefully received. Any mums of children with Downs who can give me some tips maybe?

hiya elvis, I'd say that the Down's syndrome association's website is a good way to start. Have a bit of a browse, they do loads of good leaflets, all available to download.
Got to go out now, I'm sure others will add more useful links. Well done for being such a good friend.

Thanks geekgrrl. I am trying! I must say that I got home after getting the message, was halfway through putting the shopping away and burst into tears. How must they be feeling? Are they likely to be kept in hospital longer....I'm so ignorant.

Hi Elvis, Just to say this is really nice of you to do. I wish I had known about mumsnet when my df had her baby boy last year. No real advice here unfortunately, you are already doing what I would suggest, being a good friend. take care

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hi elvis, back again now. I'd say that they may well be kept in for longer, sometimes babies with DS find adjusting to life outside the womb a bit harder so might have problems controlling their temperature, feeding is also trickier (but usually fine with a bit of perseverance). 1 in 4 babies with DS will have a heart defect and 25% or more of those require surgery, so all babies with DS have a cardiac scan early on in life.

It can be really hard at first - it was for me, anyway. Life is fine and happy and normal now but it didn't seem like it ever would be at the time IYSWIM. Just be there for them as a shoulder to cry on, supply chocolates and fawn over the baby. I found that was the most helpful thing really - the best thing said to me after dd2 was born was when a friend was holding her and said that holding her made her feel all broody.

Thanks geekgrrl, that's really useful. The website was a really good place to start. Knowing about possible heart defects is well worth knowing about.

I think I'm going to sit down and write her a long letter tonight. It would be lovely to pop in and see her in hospital, but she's too far away. I had plans to visit for a weekend in a months time, can't come soon enough.

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perhaps you can google their country/location and see if there are any support groups in the area that you can pass on the info to the parents as well - becasue they probably will not have the time to be searching this out.

DSA UK - fabulous.

just in case the baby has a heart defect - another support group for them if needed..

here

this one is a local parent group but has some info on their website.

here

this is our local one which has some fab links

here