High risk of having ds baby

[Duchess]

My friend had 12 week scan and got all clear. At birth she looked at her boy an said is he ok? After testing he has downs
He is now almost 3 and brings her so much joy.
The world is changing and is more accepting of DS children allowing them to live their full potential.

She has challenges and the little boy has had many health problems but he is now very healthy and happy.

She is with a lot of foundations and groups if you want pm me and I can get her to contact you?

[SammyRo]

After seeing our gp this morning and discuussing it with family we have decided. Not to have testing , due To miscarriage risk . The results would not change Our decision to keep the baby . So we will just have to wait and see . We think we are making the right decision for us and our family .

Have you been referred to a maternal fetal medicine obstetrician? One thing I would recommend is seeing a MFM doc and requesting more frequent monitoring, and in particular an echo cardiogram scan, as babies with Down Syndrome can have a heart defect.

If you'd like to know anything more about Down Syndrome or the waiting game, pm me.

[Becky1979]

Have you been referred to a maternal fetal medicine obstetrician? One thing I would recommend is seeing a MFM doc and requesting more frequent monitoring, and in particular an echo cardiogram scan, as babies with Down Syndrome can have a heart defect.

If you'd like to know anything more about Down Syndrome or the waiting game, pm me.

Thanks sammy , i am already being monitored closely due to ongoing health issues , but without having an positive result of ds , not sure what they will do . Would be great to talk to someone who has a ds chiild , just to prepare us for the road ahead our jellybean has ds . We will love it regardless . I used to work as nurse before getting ill , so at least we have knowledge and i have health care skills . Unfortunately i am no longer able to work and hubby injured himself and developed an infection in his ankle prior to falling pregnant and is still unable to work , so financial strain will be a big concern . I have decided to rely on my jewellery making and handmade candles to bring in some income .

[Becky1979]

My friend had 12 week scan and got all clear. At birth she looked at her boy an said is he ok? After testing he has downs
He is now almost 3 and brings her so much joy.
The world is changing and is more accepting of DS children allowing them to live their full potential.

She has challenges and the little boy has had many health problems but he is now very healthy and happy.

She is with a lot of foundations and groups if you want pm me and I can get her to contact you?

Thanks duchess , that would be awesome to have someone to talk to about the posssible challenge ahead

[Duchess]

I can't figure out how to send you a private message but I got an email address for my friend who I think actually didn't do 12 week scan.
Anyway she is very happy to talk to you and help you prepare for what may be ahead, she was thrown in the deep end but can tell you the things she proved DS kids can still do.

[LionsandBears]

If you want to be sure without risking miscarriage via a cvs/amnio, you can get the blood test instead. I think there are 2 commercial brands available - MaterniT21 Plus and Harmony. They have a 99% accuracy for detection of trisomies 21, 18 & 13. It's extremely expensive - about $1500 - 2000. However, it's a good option instead of amnio for those conditions.

I also agree with talking to a genetic counsellor. You should be able to get a referral through your GP or OB.

ETA - apparently there is also another brand called verifi and it is $1250.

[Razzberry]

Lions and Bears - Is this testing only new? This wasnt told to me 4 years ago when we were told we needed cvs testing. Do you know how accurate it is?

[LionsandBears]

It became commercially available in Australia at the end of 2012. Accuracy is 99% for trisomy 21.

[Bella29]

Hi girls, just popping in here cos my best friend and her husband found out today their twins have a 1:20 and 1:200 chance of ds. Very desperately longed for ivf babies and I am devastated for them. Hoping that they have a good outcome. Nice to hear all of your stories.

Becky I notice you are due this month, I will be stalking to hear how your baby is.

[SammyRo]

Bella29, being told that you are high risk for having a baby with DS is devastating at the time. But I'm sat here with my 7month old beautiful girl and she is wonderful. There is a lot of outdated knowledge about having a child with Down Syndrome so I get where people get the idea that is the worst thing possible. But that couldn't be farther from the truth. If your friend wants to chat with someone who has been there, I am more than happy to. Also, the best thing my best friend said to me was that everything is going to be ok and that our dd would be perfect even with the extra chromosome.

[Bella29]

They just got the initial amnio report back today. Everything is normal for the trisomy's and spinabifida. We are so relieved. We were actually there when they got the news. So it was a massive relief!!! They have to wait for the full info that will be given them in a couple of weeks. But yeah! Over the moon. Thanks to everyone for all their support and information!