A MoM-to-be recently asked:
I was told yesterday I had a positive second trimester result for Down Syndrome, 1/30. They are offering me an amniocentesis. Is this common with twins? Is it maybe a false positive? I have until the end of the day to decide what to do and I’m at such a loss.
Here is what our Twiniversity fans had to say:
– I opted out of all testing. It wouldn’t have changed my mind about carrying them and loving them. I decided less is more in this regard. If you’d love them regardless, skip the amniocentesis. Save yourself the worry. It’s hard enough to prepare for two!
– I would have done the aminocentesis if I had received those results. I would want to know so that, if necessary, I could start researching the best ways to help my child develop to his/her fullest potential and I would want to find a support group as well.
– The Downs test can have false positives but not false negatives. Would knowing for certain your child has downs change anything for you? If not. Skip it. I don’t think there is a right or wrong here you just need to be comfortable with your decision and or all the risks it may or may not involve.
– I know the test results make for an even more stressful pregnancy. We did a blood test and were told we were positive for Down Syndrome. We declined an amniocentesis because we figured it wouldn’t change anything. At the 20 week ultrasound they found a heart issue commonly associated with Downs so we were 90% sure our Baby A had it. We used the rest of the time to research and prepare. He does have Down Syndrome and he is an amazing, strong and beautiful little man.
– I assume you had a Sequential Screening. If so, I would ask for a Cell Free Fetal DNA test. It’s just a blood test for you, no risk for the pregnancy and will give you more accurate information as it looks for pieces of fetal DNA in your blood.
– My OB told us that the results are not accurate for twins, as your hormone levels are to high. The formula used to decipher is for singletons and is only so accurate.
– Last year I had the Nuchal Translucency Test and it showed that Twin B’s folds were showing indication of Down Syndrome. We then met with a genetic counselor and were given two options. The first was a CVS test which is similar to an amniocentesis and the second option was a DNA test. We were told that if we opted with the CVS test, there would be a 30% chance if miscarriage but our results would be known immediately. I felt that there was no way I would risk miscarriage and opted for the DNA test and would wait a week for results. A week later we learned that both babies were completely healthy and had no signs of abnormalities.
– Does knowing change anything? If the answer is no, I don’t think knowing will change anything, except you will spend the next several months stressing about something (possibly).
– I was high risk for Down Syndrome with my twins. No markers on ultrasound to indicate Downs, so I declined further testing. If your ultrasound looks suspicious I would consider it (especially if there are any heart anomalies) just for the sake of being prepared at delivery. It’s good to know if you need to have specialists on stand-by. Also, the risk of miscarriage due to amniocentesis is lower than may believe.
– I skipped testing to avoid this exact stress! There is no standard set of characteristics of kids with Down Syndrome. It can be mild or severe. Just because you might find out for sure doesn’t mean you’d have a better idea of things like physical or cognitive development as a result of the Down Syndrome. Choose what’s best for you!
– One of our twins has Down Syndrome. We found out right after they were born. I personally would not have wanted to know ahead of time. We would not have chosen to terminate and I just would have been stressed during my pregnancy. My twins are 2 now and they are both happy amazing toddlers.
– If the results don’t change what you would do with the pregnancy, skip further testing. I was an older mom with a higher risk for Down Syndrome. I refused any and all testing. I was shocked at the extreme pressure I received from various medical people to have an amnio. Just remember, it is not a requirement and having the amnio will not change what is going to happen either way..
– We decided from the beginning, Downs or no Downs, testing doesn’t change anything but knowing a little sooner. In our area we have seen a individuals with Down Syndrome become the homecoming king, have great employment opportunities, and great hospitals so either way we knew we would be fine.
– A twin pregnancy is so hard with the extra monitoring, I felt like it was way too much information constantly. We had markers for Downs for one of the boys, they kept offering an amnio. The odds of Downs were much less than the odds of having an issue with the amnio. When it came down to it, it didn’t matter to me.
– Very common with twins apparently. I opted out of testing for that exact reason. It would just of been another worry in my pregnancy. You’re the only one who can decide. So ask yourself this, if the baby has Down Syndrome would you have a termination/adopt or keep your baby? That will give you your answer. Amnios are risky and carry the possibility of a miscarriage. It’s a very personal decision only you can make.
– Many people I know have had false positives and their babies do not have Down Syndrome.
– This may sound crazy to those who don’t know firsthand, and in no way is meant to downplay your worry. Having a child with Downs Syndrome changed my life in the most amazing and beautiful ways. I tested negative in screenings, and I’m not sure how I would have reacted if I had know before the birth. I know I would not have risked amnio. I do wish I would have been ready for the cardiac and other medical issues that go along with Downs. Not all children with DS have them though. It will be wonderful when the worry and sadness subsides. Seek out the National Down Syndrome Society and other groups if you are lucky enough to deliver a baby with Down Syndrome.
– I think that if I were in your position, I would want to know. Of course it wouldn’t change anything, but I would want the extra time to prepare and research for this additional change that may be coming.
– I’d need all the information. I would want to be as prepared as I could be for any possible complications or conditions that can occur with Downs Syndrome. I would want to make all of the best possible decisions and be ready to make them. Walking into a situation unprepared and with all of the hormones and emotions that go with it, making decisions can be stressful. You have time on your side and a chance to understand and learn before the chaos of 2 babies.
– I had a positive for Downs with my daughter and was offered the amnio. I decided not to do it because of the risks and it wouldn’t change anything. She does not have Downs Syndrome, so it all would’ve been a lot of stress for nothing.
– I agree with the other ladies, it is a risk to have the amnio so you need to ask yourself what would you do with the results? I personally never even had the first test as I knew it would only make me worry and I also knew I would love them regardless
– Would the results change anything for you? If not, why bother?
– I had a 1 in 24 chance with twin 1. We had Chorionic villus sampling done and it was all clear.
– I’d opt out. All life is precious. Whatever happens you can manage.
For more information on Down Syndrome please visit the National Down Syndrome Society.
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