Question About "Vanishing Twin" and Results of the Down's Syndrome Blood Work

Dear T. - You must be having alot of feelings of loss and perhaps bewilderment right now. Don't know if you have results back yet on the other fetus, I hope that its all positive for you. I wanted to respond to your asking for advice because I do have a daughter that has Down Syndrome and she is the most wonderful little person in my life. I'm so glad my husband and I have her. we did chose to forego testing and were surprised and saddened when she was born. But we grew to love her so incredibly and feel very lucky. Its different but still a wonderful experience. Obviously everyone must make their own choice. As well our daughter is very healthy but I do know that some babies with Down Syndrome can have some major health issues which can be very challenging. I wish you the best. C. S.

T.,
I'm so sorry for the loss of your twin. I lost my twin son at 22 weeks. It's not an easy road. You're in my thoughts and prayers.
T.

I realize that my response is a little late, but I wanted to respond anyway. I wouldnt rush off to get an amnio. They can be dangerous to the baby. I would go see a genetic counselor first. I am sorry for the loss of one of your twins. I did not have the same situation as you did because I was only pregnant with one baby, but I did have a normal nuchal translucency test, and abnormal bloodwork. I refused to have an amnio due to the fact that it can cause miscarriage. I had a more intensive ultrasound done that showed no markers for Down Syndrome and my son does not have Down Syndrome. I would look into having this done, too. I only wanted to know if he would have Down Syndrome so that I could be prepared and informed, but not enough to have an amnio. Either way, to me, losing a baby to an amnio is much worse than having a baby born with Down Syndrome. I hope that helps. Good luck!

The blood work with Down's has more false positives then positives. That is what was told to me by my OB. The best thing to do is in fact have an amnio to make sure one way or another. I did not have any blood tests done because I denied them and then on u/s my daughter was found to have 'markers' for Down's. I also denied a amnio because of my risk with miscarriage and she was born with out Down's. I was worried sick though up to and even after her birth. However for my family and I it did not matter if she had Down's or not. The turn out was going to be the same. Good luck!

If you feel you must absolutely have an amnio you should consider waiting until you are pretty far along (you didn't say how many weeks you are). I have 4 living children and I never had any blood screening done for abnormalities. I knew I would love my child no matter what, so it wasn't worth the stress for a test that could be wrong. Even my last 2 children were born after I was 35, and I still wouldn't do the tests. A miscarriage can cause all sorts of things to go wacky in your body. So don't stress the results. In my opinion you should just repeat the blood tests several times rather then submitting you and your baby to an amnio.
I am sorry for your loss. I too lost a twin, at 22/23 weeks. My survivor is now 7, and he's a happy, healthy kid!

Hi T., I would also recommend that you meet with a genetic counselor (www.nsgc.org - to find one in your area). A genetic counselor should be able to give you more specific information, including a better estimate of risk of Down syndrome and evaluate your family history to make sure that there isn't any other testing that could be done at the time of the amnio. He/she can also discuss the risks/benefits/limitations of amnio with you so you can make an informed decision about whether you want to proceed and help you understand if there are any other risks that these test results could be associated with. Based on what you wrote it seems like you have to wait a few weeks for the amnio so you have some time to get an appointment. Best of luck with everything! D.

T. - I'm very sorry to learn about the loss of one of the twins. That is hard news. Hang in there.

I am 30 weeks pregnant with my first child and had a similar result from our blood work when we went for the genetic screening (the results said I had a 1 in 10 chance of a child with DS). My husband and I did some research and instead of going straight to an AMNIO (which has a high risk of miscarriage - 1 in 200!) we scheduled our level 2 ultrasound. Based on that Ultra Sound, our risk of a child with DS improved to 1 in a 100. They looked at his heart and his fingers, plus several other things, and there were no physical markers.

The most compelling thing for us was to limit the risk to our child. I realized that if we lost our baby because of the AMNIO I would never forgive myself. The reality is, I wouldn't let any child do something that had a 1 in 200 risk of death -- nor would I do that to myself.

Hope this helps,

S.

T. - I am sorry for your twin. I used to work as a cytogenetics tech (I used to do the lab tests for the amnio, HCG, etc). The chromosome analysis that will be done with the amniotic fluid will absolutely determine if your baby is Downs or not, including what can be seen on an ultrasound. I am not sure what other tests you have had, such as ultrasounds, etc, but the bloodwork that measures HCG, AFP and other markers is a screening test, not 100% diagnostic and the risk results can be affected by a lot of factors, including the twin that did not make it. The screeening test is an indicator to doctors that something may be wrong and further testing is needed. The amnio will help the doctors determine what is going on. The results usually take 3-7 days. Good luck and sorry for your bad news and additional distress.

hi,

i have not experienced this exactly-but as the twin of a sister who died inutero I just wanted to send you my thoughts and say that i survived. my mom was on full bed rest for 4 months but im here.

i hope this lifted your spirits even just a little,
I have no facts on downs except that the test can be wrong and cause more stress than they prevent, we didnt have them done when i was pregnant because they can be soo soo wrong. i have read other womens posts in the past that they were told their child had downs-their baby was born and they were perfect.
dont worry untill you have a concrete result-like your perfect little baby in your arms and you can realize there was nothing to fear.
I hope this has helped,
K.

let me know if youd like me to talk to my mom she will have more insight on this than i do. luck and hugs.

after having the blood work also do the full scan. at our age (im 2years older then you) the do a secon level ultrasound that counts the bones. this plus the blood results will be more definitive. like for example blood test says 1 in 300
with the ultra sound done as well they could be either higher or lower. dont be to scared or upset either. try and stay as calm as you can. i know easir said then don but its better for the baby if you can and seek counseling no matter what.

Hi T.,

I had never heard of that until my niece and my cousin's wife
both had that happen to them. Both at the early stages of
their pregnancy's. They both went to genetic counseling and
both of the baby's were totally healthy. It's sad to know
that you would have had twins but when things like this happen they say it's your baby and body's way of letting you know that something is wrong. Follow through with your test and monthly Dr's visits and that will help you have peace of mind. Good luck for a happy and healthy pregnancy. D.