# Did anyone get amnio with their twins?



## san fran shan

My husband and I are trying to decide if the risk is worth it. NT scan and 1st and 2nd tri blood work came back negative for Downs. But just found out we have two soft markers for down's syndrome on each twin. I am freaking out to say the least. Our chances are still really low. It went from 1 in 100,000 to 1 in 10,000. The risk of miscarriage with amnio is 1 in 200. Just wondering if any of you ladies had it done, for what reason, and the outcome.

Our soft markers for twin A are a single umbilical artery and short humerus bone. For twin B it is a short humerus bone and short femur. They are not short to the point of being deformed, just at the lower end of normal range for both. 

Would you even consider amnio with our odds and these soft markers? 

Thank you!!


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## May2011Mommy

That's such a tough call. 
A question, I would ask myself (if I were you) would be...what's the benefit of knowing? And are those benefits worth the risk? 
Does that make sense?


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## drsquid

im planning amnio regardless of what my screen shows etc. i looked into doing the blood test but,.. no dice no one does it for twins (even ucsf isnt doing research). im 39 and it would make a big difference to me. considered cvs buti dont wanna know the sexes and it is hard for them to be sure if they got both twins unless they are different sexes.


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## SRSG

San Fran- What did you end up deciding to do? I am in a very similar situation. All blood work and NT tests came back negative, but they found 1 soft marker on each twin. One had short humorous and the other a short femur. I have been beside myself with depression and anxiety. The thought of doing an amnio and risking miscarriage is terrifying, but not knowing is killing me. The MD and genetic counselor said my percent of chance of having them have downs is still really low (1:12000) and that is much lower than the percent of miscarriage with the amnio (1:150 for twins) so it feels silly to get the amnio, but as I mentioned I am beside myself with grief. Would love to hear what you ended up deciding on doing! Thanks


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## drsquid

i had an amnio. the risk is not 1 in 150. the risks are independent and not additive and are generally thought to be at least 1 in 400 in well trained hands. that aside, the amnio on A was completely painless, on B it was uncomfortable as it was much higher in the muscle. I had no cramps, no complications. Went to a work thing that night where i had to stand for hours (tour of a new building) and was fine. BTW both came back normal. im 30 weeks now, no problems with fluids or anything else. for me not doing amnio was not an option ( i had to know) but i really think it is way less of a big deal and far less risky than people make it out to be.


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## san fran shan

I did not have amino for the main reason of fear of miscarrying two healthy babies. We decided our chance of DS was so low and not worth it. Now I am so happy we didn't do it. My twins are totally healthy and do not have DS or anything wrong with them. In fact my girl (twin b) it really long and has long arms and legs. 

It was such a shitty situation to be in and up until I gave birth I had the fear in the back of my head that something would be wrong. If I was pregnant with one baby I wondered if the decision to have amino would have been different. A lot of agony and stress at what is supposed to be a super happy time. It makes me sad that you are dealing with the same thing. Keep in mind that soft markers are really weak indicators. I found an article that made this analogy. People with DS tend to be short. Therefore being under 5'1" is a soft marker for DS. If you gather up all the adults under 5'1", how many actually have DS? Not that many. If you gather all the people with short long bones, only a tiny % have DS. 

I wish you the best and there is no wrong decision. Do what is right for you and I hope you can find an answer that allows you to enjoy this special time. If you want to ask more questions feel free.


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## SRSG

Yes, we are kind of thinking the same (just not worth the risk to miscarry two healthy babies). However, I am having a really hard time grasping with this unknown for the rest of the pregnancy. Part of me doesn't even want to talk to anyone about the pregnancy. The thought of having a baby shower with this looming over me is not appealing. How did you end up getting through the remainder of your pregnancy? Any tips? This really is such a miserable experience, and it makes me so sad since it is supposed to be such a happy one.

My 20 week ultrasound is tomorrow and they want us to make a decision by then. Sigh...


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## Babyduo

I think it is easy to get caught up in what ifs when you have a multiple pregnancy. I have made a point of changing my thoughts when I start to stress over things I have no control. I have my 20 week scan on Friday I am so eager to see them!


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## san fran shan

I'm not going to lie, it sucked really bad. I almost cancelled my baby shower. It wasn't just the risk of miscarrying two healthy babies but more importantly for us it was what we would do if one or both babies had DS. After seeing them on the ultra sound looking like little babies there was no way we could terminate. I couldn't even fathom terminating 1/2 of a twin pregnancy. So that is what it boils down to. What will you do with the information you receive from the amnio. If you can't or won't terminate then what's the point? As for enjoying the pregnancy, it was hard. It took a few weeks for me to be at peace with everything and I would still cry about it up til the end. You just have to make your decision and accept it. I know exactly what you are going through and there is nothing I can say to make it easier for you. Focus on how low your risk is. You have a 99.9999999% chance that nothing is wrong! Some people are faced with a 1:5 risk and have nothing wrong. I just kept focusing on that and also my husband was way more positive than me and kept me in check when I would focus on the what ifs. 

I was completely devistated the day I was told about our soft markers. Balled my eyes out on the ultrasound table. It was as though I was told that both my babies had DS when in fact I was only told my risk was slightly higher. 

Good luck to you and I hope you can find peace with this. Based in what you said above I don't think anything is wrong with your babies. I'm almost in tears thinking about what you are going through. Hugs to you.


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## nyba

I had both CVS and amnio done. When the CVS results came back, the boy's results showed an extra chromosome. So we had to do the amnio to confirm if it was confined just to placenta or was present in the baby. 

Honestly, neither was particularly enjoyable to do (yes, it hurt) but I had zero side effects. If you go to a doctor who specializes in this (as I did), there really is very little risk. You can watch the entire process as it happens. When I did it, there were 3 doctors in the room. One with the ultrasound, one doing the actual injection and a 3rd standing by to monitor. 

For me, not knowing simply wasn't an option. The worst part about the entire thing is waiting for the results (which luckily came back okay!). But I honestly believe people make a much bigger deal out of it than it should be. With the advances today, the risk really is quite minimal.


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## SRSG

San Fran- So I decided not to get the amnio... Just couldn't do it. However, on our last u/s (20 week u/s yesterday) the soft markers that they had found in the 18 week u/s were no longer present. They said this was a good sign, but didn't negate the fact that soft markers were found at one time. Did this ever happen to you?


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## san fran shan

Yes. At my later scans in the 30+ weeks the short long bones were not there anymore and measured normal. The single umbilical artery still was on m boy. The only outcome was my boy was almost 2 pounds less than my girl at birth but he is now gaining weight faster than her and will catch up soon. 

That is great news you got at the scan. Try not to 2nd guess your decision and know that the odds are on your side. This is easier said than done, but being stressed about it won't change anything. Just forget this all ever happened and treat your pregnancy like the miracle that it is. The emotions you feel right now about all this will subside and it will get easier to enjoy he pregnancy. I felt better and better after each subsequent scan and also having a high risk doc tell me he didn't think anything was wrong with the babies. 

No one should have to go through what you are! It was definitely the hardest thing I have ever faced in my life.


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