Post by winelover77 on Aug 12, 2013 12:13:53 GMT -5
On Friday afternoon I received the news that my babies (identical twins, 16 weeks) have a 1/15 chance of being born with down syndrome. While that is a 6% chance, this was quite shocking and devastating as not only did we do genetic testing of our embryos prior to transfer, but a few weeks ago received the results of our Harmony 21 as having a 1/10,000 chance of them having Downs.
We are in a state of shock and confusion. I suppose anything is possible, but I can't imagine that the wrong embryo was implanted and that the Harmony results are false. From reading a lot online I have read that a lot of people have shown a high risk and ended up with them not having a baby with Downs.
I am waiting to get scheduled for a level II ultrasound and in the meantime riding this roller coaster of emotions
UPDATE: I had my level 2 ultrasound yesterday and there were no soft markers found. Babies look just fine! I will continue to have level 2 ultrasounds to check for Twin-to-Twin transfusion as that is a risk with identicals, so at least I get to see my babies every two weeks . Thank you all for your well wishes
Post by trafficgirl on Aug 12, 2013 12:21:57 GMT -5
Is the quad test as accurate with twins? I can't remember what we were told when we did our testing, but I am remembering something about a test being less accurate.
A 6% chance of downs = a 94% chance of not downs. If you had preimplantation genetic testing done, that is more reliable than the quad screen. Given that you've done the genetic testing, your odds are much lower than 6% (whatever the failure rate is for that).
Is the quad test as accurate with twins? I can't remember what we were told when we did our testing, but I am remembering something about a test being less accurate.
Regardless, I'm sorry you're going through this.
This is what we were told as well, and although we opted out of the Harmony screen, I *thought* the Harmony screen was only accurte for one baby. From what I understand, diagnostic testing is the only way to know which baby might have DS.
ETA: oops - they're identical. Ours are fraternal. I'm sure that the info is different with identicals. Best wishes to you, OP. Fingers crossed for good news.
I'm really sorry that you're going through this. I hope that you get better news tomorrow.
Post by winecheery on Aug 12, 2013 14:40:28 GMT -5
sonrisa has a very logical, rational take on things. ::Hugs:: to you in the meantime and I hope further testing yields more conclusive results for you guys.
Post by Velar Fricative on Aug 12, 2013 14:57:13 GMT -5
I'm so sorry. I went through a similar roller coaster with my quad screen results after a normal NT scan - my odds weren't as high as yours for Down Syndrome but they were much higher than normal for someone my age. The doctor left it up to me on what further testing I wanted to pursue but mentioned that an amnio is the only way to find out for sure. I did opt for the amnio because I needed to know for sure. Fortunately, everything is fine.
My best advice is what you've already seen in this thread - focus on the 94% chance, not the 6%. The odds are in your favor. Good luck!