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Down's Syndrome awareness week

Hey ladies,

Just wanted to let everyone know that this week is Down's syndrome awareness week - the Down's syndrome association are campaigning to get more support for parents who either get a pre-natal diagnosis, or to those (like us!) who get the shock of their lives once LO arrives. They want the information available to new parents to become more consistent no matter where in the country you live - we have been very lucky in the information we received here in Gloucestershire, but it could still have been better! Google Down's syndrome association to find out more!

Ta!

Sarah & George xx :\)

Replies

  • Thanks for letting us know Sarah, I will look into that.
    How is George doing now? He must be 2 soon surely? Last I rememeber reading from you was that he was walking much earlier than you expected and you were so proud!!
    Hope you're all well,
    Gemma x
  • Hi Gemma,
    Yes the little scamp is 2 on 15th April!! Can't believe its all gone so quickly! He's doing really well (although had gastroenteritis this week so not been a happy bunny ;(!) - now literally running around, and saying lots more - favourite new phrase is 'oh dear mummum' - said with his hands on his hips!!! He can also sign for pretty much every animal in his little book thing - cat/ dog/ horse/ hamster/ rabbit etc etc!!!!

    Thanks for asking!
    Sarah x
  • Very clever boy!! Sounds like he is doing well and doing pretty much same as Gabe.

    I have no idea what information is around about Down's syndrome available to parents but I did not know it was depending on what area you live in...Surely that's not right.

    We didn't have the pre-natal tests ... don't think we will for our next one...it is a difficult decision tho. Considering you found out after you'd had George, would you have preferred to know during pregnancy to prepare a bit more? x
  • Sounds like George is doing really well, great news!

    I had a m/c earlier this month and I went to my doc when I wasn't sure if I was m/cing or just spotting. We talked about extra testing since I just turned 36 and obviously Downs Syndrome came up. If I get pregs again I'll get tested but only just so it cuts down on surprise and we can prepare ourselves as much as we can...

    Just out of curiosity, I know George's "condition" was a surprise to you but do you think raising him to this point has been easier than you thought or harder?

    Thanks for bringing this up!

  • George sounds like he is doing really well hun, can't believe our lo's will be turning 2 so soon! Where have our babies gone :cry: I'm so glad he's thriving hun, he looks really sweet in your photo.

    Regarding test for Downs in pregnancy- I was tested in my 1st pregnancy and the MW was really shocked that I wanted it doing. It was at the time that Honey from Eastenders gave birth to her baby with Downs and it made me think it could happen to anyone, whereas before I'd assumed that it was only older mums who had Downs babies.

    xxx

  • Hi Ladies,

    Thanks for all your interest - and I will try to answer your questions!!

    Mummy to Gabe - I am actually very glad that we DIDN'T find out - knowing what we know now about the syndrome, I think that knowing before baby arrived would have driven us potty.... all we would have done is read the negative stuff about how delayed their development might be, how they could be in the 50% that have heart problems etc - whereas finding out post-natally (even though it was a nasty shock!), we didn't have time to think about all that as we still had life with a baby in SCBU and then a newborn to contend with! And, as we have found out since, there is such a variation in the extent to which children with the syndrome are affected, and we are very lucky that George is at the milder end - and not having the heart/ intestinal problems means that we haven't spent lots of time in hospital, slowing his development down. And the literature, as positive as it tries to be, doesn't really tell you that!

    Frillypink - don't really know whether it has been harder or not as, since George is our first, I've got nothing to compare it to! I suppose you could argue that having to go for all the hospital checks etc has been harder, but it just becomes so much part of our lives that we don't really notice it to be honest! And so far his needs have been no different to any other baby - and the number of support groups and the like that we have been introduced to means that our social life has taken off and we have met far more people than we ever would have otherwise. It's so nice being able to talk to other Mums with disbaled children - and everyone is so positive, no matter how severely their children are affected - although you do have to stay positive, as being miserable and feeling sorry for yourself (like why did it happen to us???) doesn't help anyone, least of all LO. I think the only thing that we find hard is not knowing what the future will hold for him - we're already told he'll be suitable for mainstream, but, as a Reception teacher myself, I'm in quite a good place to see how he gets on when we get to that stage! But whatever happens, he's sticking two proverbial fingers up to the syndrome so far, so who knows???!!!!

    And Lea77 - you're right - it can happen to anyone! When I was offered the test, we refused because we were definitely of the mindset that I was only 28, and so it couldn't possible happen to us! In fact, I remember sitting down to read a copy of Prima Baby a few days before George was born, and skipping right past an article about a baby with Down's, thinking that I'd never need to know about that!! But we have found out since that the average age of a woman to have a baby with Down's is.... 28! Not 38 as you might imagine!!

    Not thinking about number 2 just yet, but when we do, the chances are that I won't have the test anyway. We thought the hospital would insist on it, but when George's blood tests came back to confirm what the docs thought (an agonising 4 days after he was born!), they told us that he was just one of those '1 in 1200' babies, and so my chance of having another is only 0.1% more than any other Mum having a second. But they are going to scan me at 28 and 34 weeks as no-one had picked up the fact that I was full term and he was only 4lbs 2oz - that clinical palpitation thing doesn't work on me apparently! So more growth scans and much closer monitoring next time methinks!!

    Sarah xx :\)
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