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I did a search but couldn't find it so here it is. My baby is 18mths old and was diagnosed at birth and confirmed by a karyotype test a week later that she has Trisomy 21.
Looking for anyone else who has a kids (or any other relative/friend) with Down Syndrome
Cas
Hi Cas and welcome to BB. I haven't got any DS children, but would love to just say hi and welcome once again :D
Hi welcome, do you have a son or daughter? how is everything going for you.
Hi nangari and welcome to BellyBelly. Up until last year, my daughter's best friend had Down Syndrome, but her family moved to Melbourne (we live in Qld) and we've lost touch, unfortunately.
Hi Cas, welcome to BB!
I have a nephew who has Down Syndrome - he is turning 7 this year and has just started school! Very exciting :) Do you attend a support group at all? My sister-in-law has a wonderful group she goes to.
Hi Cas
A genetic service should be able to put you in touch with other Mums with kids with Down Syndrome. Genetic services are usually located at Women's or Children's hospital. Do you still have contact with the person who organised your karyotype test?
There is also the Genetic Support Network of Victoria (they have a website, if you google their name you will find it) or the Down Syndrome Association (there is one in every state) who may be able to give you some contacts.
Take care,
Kate
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Hi and thanks for the welcomes :D I am involved in a couple of groups already regarding DS but I just thought I'd check if there was anyone here ;) Not everyone hangs out in the same spot do they (well, looks like a few of us keep meeting up lol - the BBBs are doing great! thanks ;) )
If anyone has any questions regarding Down Syndrome, I'd be more than happy to answer them. There sure are a lot of myths still flying around these days. For example, I read recently that a woman was told by her obstetrician that 50% of babies born with DS die before the age of 5. THIS IS WRONG!!!!
About 50% of babies born with DS have heart problems and most of them are corrected with surgery before 12mths. The life expectancy of people with DS used to be 25yrs but since the heart operations have been in place, this has increased to 55yrs. Bear in mind this is an average and some live longer than this :D
Has anyone else heard anything about Down Syndrome that they have ever wondered about? Feel free to put me in the hot seat! lol
Cas
I have a question for you, about yourself if you don't mind. Did you know that you were having a downs bub before birth? How old for you? I'm an old mum to be (41)and although my early results from my amnio has come back as no trisomy's being found I'm still waiting on the final results (any day now) hence my interest.
Hi Cas, welcome to BB. In 06 I was preg and went for my 20wk scan only to be told something was wrong. We were told our baby had Trisomy 13 and I would unlikely carry full term. Unfortunaly he was born sleeping at 24ks, we were devastated.
Satya-I know how you feel as I was 36 at the time and was told my age had a lot to do with it but in 07 I gave birth to a healthy baby girl.
Satya: Congratulations on your pregnancy! I have a friend who is 43 (44?) and just had her first. She's the cutest little baby I've seen in ages. Perfectly healthy (she had 2 or 3 miscarriages prior). How many weeks are you? Did you have tests with your other pregnancies?
With our first child we were asked if we wanted the triple test but we decided we didn't need it. I don't even remember being asked with our others. I think they just asked if we'd had it before and since we always said no, they never offered? We wouldn't've had it anyway. So no, we didn't know about our baby was going to have Down Syndrome until after she was born.
I am 35 but you know, when you read statistics, you need to use them properly. Age does NOT cause Down Syndrome. Statistics say that the older a woman is, the more likely she is to have a baby with Down Syndrome. BUT they neglect to tell you the other part of the statistic which says:
80% of babies born with Down Syndrome are born to women UNDER 35yr.
I was furious when I heard that (post birth) because I had busted my gut to have my 4th child before I turned 35....just to 'avoid' complications etc. Now I know, it's not age that causes the defects, it's just statistics...
gggrrr Dianne - it's comments like that that make us feel there's something wrong with our eggs.....so wrong! and so rude. I hope you went back with #4 and showed them lol
Cas
Cas,
I'll be 19 weeks tomorrow so as I see it the half way mark as I don't reckon I'll go full term at my age... all those risk factors they throw at us again.
All my other pregnancies ended very early - around 5-6 weeks so it was too early for any testing.
It must have been quite a shock for you when your bub was born I would imagine then. I don't think any of us really expect something out of the ordinary to happen to us in life, we might worry like mad about it, but deep down we always think luck will be on our side. Did you find out straight away or did you have to wait for testing to find out - I've read that sometimes it's not very clear at birth.
I actually read somewhere that the majority of DS babies are born to women in their twenties as this is the agegroup that are having the most babies and also because mostly they don't have testing. I also read that about a good percentage of cases aren't found with testing nor with detailed ultrasounds late in pregnancy so I'm sure there are a number of people who have been very surprised to be in the same situation as you.
Having the NT test combined with the BT still only gives you a probability of the outcome and I don't think some women understand this. I think some think that if they got a result of say 1/1000 then they wont have a DS baby when in reality they could be the 1 out of 1000 that does. Likewise my result of 1/37 means I could be that 1 or one of the 36 that will not have a DS baby. That's why I went ahead with the amnio to get a clearer result... but like anything nothing in this life is 100%. I will get my full result tomorrow when I go to my OB but am feeling pretty confident as I feel he would've phoned me by now if something was found.
I did a bit of research on downs as soon as I became pregnant with this one and I found an interesting piece of research. It said that a woman of 35+ with a partner who's 35+ has twice the risk of DS than a woman of 35+ with a partner of 24 or under. The way I saw it I had half the normal risk of most women my age because my DF is only 24.
Basically they really haven't done research on the father's age before - all the stats have been worked out on mother's age alone. In the past most women were partnered with older men or perhaps a couple of years younger at most, the trend for much younger partners has really only happened in recent years so there weren't any women out there to do such research on....now there is. Anyway the research suggested that the father's age should be taken into account if the woman is over 35, but only if he's under 24 will it make a difference. The OB who performed the amnio said that if your partner is over 65 it can increase your risk, but I've never read that anywhere so I don't know where he got that piece of info from.
I think we may find in the future that it's all a bit more complicated than just the egg alone as the medical profession tries to tell us it is. Eye color, hair colour, inherited things like baldness, or disease, mental illness, nose shape, height etc are all based on a combination of genes from both parents and I reckon when they research it more they will find that both parent genes contribute to downs as well.
Dianne - I'm so sorry for your loss. It must have been very hard after you got told you'd probably lose the baby, and then went on to, and also very nervewracking once you got pregnant again. It must have been a relief when all worked out well.
Waiting in anticipation of your results Satya ;)
Cas
Hi,
Im not actually sure yet if my child does have ds im in the process of going through the tests and am out of mind with confusion, it would be good to talk with someone who knows what i am going through. My email is TicTac0@hotmail.com
I got my results back on Thursday. No abnormalities found. I'm just so relieved. It's been a very worrying time. Heard a nice strong heartbeat too so am looking forward to my next scan in 3 weeks to see him again. I also have to have a scan at 32 weeks as apparently when you've had an abnormal 12 week scan bubs can end up with slow growth.
nikkie - I tried to pm you but for some reason can't. Will try to email you when I get a chance, but I don't check my email much. Testing is quite stressful but try to keep calm about it all, most people who go through testing have no abnormalities found. Rest assured that if you have to have an amnio done that it is not painful, nor stressful when you get it done - it's just the worrying about the results that does your head in. I'd recommend paying the extra $200 for the FISH results if you do get an amnio as you get some results back in 24 hours which eases the pressure somewhat until you get your final results within 2 weeks. The FISH result will also tell you without doubt what the sex of your bubs is which is a really good lift to have whilst you are going through this stressful time.
Nikkie
Is your bub born yet?
Take care,
Kate
:
Hi I've worked in aged disability care and my clients who grew up in unloving institution style accommodation since the age of three lived to well over 60 and thats without thee love and care of mum and their familys.
I wonder if it would be ok to mention here there's a new forum called DS Down Under which provides support/networking for people involved with Down Syndrome in some way. DS Down Under - Log in
Cas
i have just had a baby bon with down syndrome and just wanted to ta;lk to other woman who also have down sydrome babies? my lil man is only just 1 month old. my email is also sammy_5898@hotmail.com feel free to add me?
Hi Sam and welcome to this support section. We look forward to getting to know you a little better and hearing more of your story.
Hi Cas,
My BIL has Downs. He's 27 and healthy as an Ox :)
My MIL was only 21 when she had Nick so he was a big surprise as it is widely thought that only "older women" have DS babies..... which isn't the case.
We were also told that he would die before his 5th b'day and it would be easier for everyone to just place him in care .....GRRRRRR!!!!!!! I HATE people who spout rubbish like that.
Because my DH was only a year above Nick and my other BIL Shaun came along as a surprise about 18months later Nick developed really well purely by coping his big and little brother.
Infact Nick only started to "regress" when he was put into special school for high school as back then a mainstream school wouldn't take him. When I say "regress" he got lazy with his speech etc and it makes him hard to understand whereas everyone tells me that before he went there he spoke as clearly as anyone else :)
He has a couple of probs though which we are told is quite normal for DS kids. He has a form of OCD (at the moment he hates the word "yes" and he throws out toilet rolls) a couple of years ago he would throw out anything that wasn't nailed down (that one was fun ...lol he threw out all my shoes once :rofl:) and a couple of months ago he had an obsession with going to the toilet.
The challenge my IL's are facing at the moment is that he has started to show signs of dementia - sadly once again something that is not abnormal in DS.
Just little things like setting the table (counting out plates etc) has become a challenge for him and he has also started to have short term memory probs.
But he's so cool and funny. A great judge of character (if Nick doesn't want a bar of someone there is usually a bloody good reason why) and he's always the life of the party - whenever there is music playing he is the first one in there to have a dance .... even if it's only the music they play at teh servo while your filling up :)
Anyways I didn't realise how much I have been rambling on - sorry!!!
They are the greatest kids and they bring so much to your lives - I'd never been around disabled people before meeting Nick and in the 6 years I've known him he's taught me something new everyday and I feel really blessed to know that my kids are going to be able to realise that just because someone looks different that doesn't mean you should treat them that way :)