Hi I had ultrasound for Down syndrome today and it's come back as 1-57 for 21 and also high risk for Edwards (18) would like to know if anyone has had this and had healthy child I'm having harmony testing done but results get sent over seas so it's a long wait and if anyone with a Down syndrome child can give me advice on how hard it is ect would be great already have 2 children one with adhd and add he's 6 and life is very hard just wanting to know if another child with needs would be hard I've cried n cried but really just want advice thankyou

8 Replies
I think until you have diagnostic testing then try not to stress (easier said than done I know). Think of it as you have 50 out of 51 chances that your baby does not have it- the odds are on your side! I will say that I have a child with fragile X syndrome which is one of the leading causes of inherited intellectual disability second only to Down syndrome. It is hard. The constant worry of what the future will be like for our son is horrible. Who will look after him when we're gone. That on top of all the struggles of everyday life with a child with extra challenges gets to be a lot some times. I love him more than anything in this world, he brings us so much happiness, he has shown us strength we never knew we had and he is just a beautiful soul! But there are days when I wish deep down that he was a typical child and we could do things like a typical family- and then those thoughts in them self bring guilt! Would I give him back? No way, I couldn't imagine life without him! Would I rid him of this horrible syndrome if I could? In a heartbeat! Would I risk having another child with it? Not in a million years! I know that may not be much use to you but I guess the general gist is that yes special needs children are challenging. There are hard days, some harder than others. Parents who say they wouldn't change it are probably just too guilty to admit that they actually would do just about anything to give their baby and easier and more typical life! But they bring a lot of love, and the rewards they give are worth more than anything. Everyone's situation is different so only you would be able to answer the question of whether you could handle a child with this condition. Good luck! ??
I'm one of those "horrible people" who would terminate if I had a Down Syndrome baby.
I'm only young, but have known since I was teenager that I would terminate if I was in that position.
I was that kid in school that didn't care if someone was disabled or had a mental disability, if you were nice to me, I was nice to you.
My best friend was deaf, so I spent a lot of time with those in the Special Education unit.
There were a few with Down syndrome.
One in particular had a mother who taught at the school. The mother was miserable. When around her DS daughter, you could tell that she would give anything to have a "normal" child. Very rarely happy in her daughters presence. She loved her, yes. With all her being. But being the mother to a mentally disabled child takes its toll.
Of course you see all the social media posts about how wonderful X's 3 year old DS child is, or how inspiring X Down syndrome model is, but what they don't show is how hard it is.
Without a doubt, any DS child will get picked on, bullied, almost every day of their school life. It's an absolutely horrible feeling. (I got bullied day in and out just for being their friend and sticking up for them. So I can imagine how hard it is on them).
Also, unlike many "normal " children who you can throw out in to the big world at 18, that's highly unlikely for a DS child. They usually need you as life long carers. And may don't outlive their parents.
It will most definitely be hard on you if you did have a DS child. But you will also have an incredible amount of love for them. Just like any other child. And as above, you have over 50 to 1 chance that your child won't have it.
All the best of luck with your results.
I just want to say, I am the poster who answered above and you are not horrible, that is realistic. If I were to have an accidental pregnancy again and it turned my baby had inherited fragile X syndrome I would terminate. And I am the parent of a wonderful happy special needs child! Don't ever let anyone make you feel bad or horrible for being realistic and for doing what's best for you! ??
I've got a long 8 work days to wait for further testing we payed for the harmony testing to be done first has anyone had the first lot come back high and harmony come back low
There are labs in Brisbane that do the Harmony Test now, I had blood drawn on the Gold Coast and the the wait was only about 7 working days xx
I had a high risk too (1.297) went and saw an OB who did a more indepth ultrasound and said everything looked fine. The main reason my chances were high was because I have low Papp A. She changed my reading to 1.1200 so I didn't get the harmony test. Im 22 weeks now and so far so good. Because of my low Papp A I have to get an ultrasound every 4 weeks from 28 weeks to ensure bubs is growing properly. Good luck, I know what a scary time this must be for you.
My results returned a 1:47 chance of T21 with my daughter. I opted for the amniocentesis as I needed to know 100% what the outcome would be. Not that, that would've changed anything but I'm a 'planner' and hate suprises.
We are very lucky in the fact that our results came back clear.
If you're in the Brisbane area, I can recommend an amazing high risk OB. He was caring, thoughtful, explained everything, made me feel really relaxed and has amazing results!! I asked him last year during my procedure and he stated his results we're well above average at 1:659. Meaning 1 woman in 659 unfortunately miscarriaged after the procedure.
Thanks everyone we got the harmony results back and they r saying chances are 1-10,000 for Down syndrome and 1-10,000 for Edwards but the doctors could explain to me how the first test was 1-57 and they were only done a week apart if love to believe it's a healthy baby as they say the harmony test is 99% correct but the other was 85% correct so how can the results be at other ends of the scale