Told high risk for downs, carrying twins

[momtoone]

After searching web for any sort of comfort after being told both babies (twins) are at high risk for downs, I just came across this website. Just wondering if anyone else has been given the odds of 1 in 50 or close to it. Twin A 1 in 50 and 1 in 87 for twin B, results combined after not so great NT scan and blood work results, plus my age of 37. I'm at a loss, confused and extremely nervous. This worry is starting to consume my entire life on a minute by minute basis. Its so hard to relax, in not so many comforting words I was told my options meaning an amnio, which then led me to believe I have no hope. Amnio now scheduled on April 22, which is a whole another topic of extreme worry right there! Anyone words of courage and hope would surely help at this scary time of the unknown.

 

[momtoone]

Sorry for grammar mistakes, just another symptom of my stress level.

 

[nickyXjayno]

lady on here had odds of 1 in 28 for downs, her daughter was born with downs too.
her story is in the birthing section.
not sure what to say but you're odds are better than hers.
what do they do with the amino test?

 

[Lottie86]

One of the Mummies in the preemie section was given odds of 1:5 and her little boy did not have Down's Syndrome.


To think about it another way you have a 49 out of 50 and 86 out of 87 chance that the babies will be absolutely fine

 

[miss cakes]

plenty of women have much higher odds than that like 1 in 10 and have healthy babies so dont assume just yet that yours arent perfectly fine and look at the amnio as a good thing your get better answers that way although you know you dont have to have it if you dont want to! try and stay positive i know its hard but even if one of your babies or even both had downs its not the end of the world good luck with the amnio i hope you get good results xx

 

[beatrix]

Please keep in mind that blood values for a twin pregnancy, particularly concerning downs, is very unreliable - the blood value results are based on singleton pregnancies. I'll be thinking of you and hope everything turns out ok. Stay positive if you can.

 

[Andypanda6570]

Just try to think positive , I think you have great odds/ Do the Amnio and everything will go great!
Wish you all the best! xoxoxoox

 

[LoolaBear]

being a twin mummy in the UK i am very surprised they did the blood test as well as the nuchal scan.

Because all the blood is mixed there is no way of defining which is your blood which is baby A's blood and which is baby B's blood. It is only accurate at giving odds of downs with singleton pregnancies not twins.

with twins they offer the nuchal scan only then if this brings up high odds then they offer the amnio.

there are lots of mummies out there who have had worse odds than you and gone on to have happy healthy babies.
all i can say is try not to worry until youve had the amnio, the results so far are only odds it isnt saying for definate they will have downs. an amnio will be able to tell you this, so please try not to stress yourself until you get the results of the amnio. x

 

[momtoone]

After doing so more research you are all right about others having higher odds than myself. I just felt like my doctors made it out to sound like it wasn't so good which scared me. Then I tried to stay off the internet for fear of reading something that would make it harder but eventually felt like I needed to do some research of my own, and found this site. Its hard to believe some women are given odds of 1 in 10 but I'm reading that more and more. I just feel overwhelmed because I now have two lives to be concerned for if both are born with downs. Its just hard to process all that comes with that right now especially when pregnancy already increases your emotional state of mind. Thank you for your words, I realize there are worse things in life that can happen and my heart and prayers go out to all who have lost their precious little babies shortly after birth. I will try to stay positive, thank you everyone!

 

[mafiamom]

over here in the states, they dont even bother doing the blood work with multiples. the logarithmic formula they use is for a singleton pregnancy only, so with twins, the results would be totally unreliable.

hugs. i wish you werent going thru this

it if makes you feel ANY better, my baby had a 1:3 chance of trisomy 18. had the amnio and he is 100% healthy.

 

[oliveoyl]

A positive story for you .....
My odds for a singleton based on bloods and NT was 1:21
We chose to do no further testing. She was born last week and does not have Down Syndrome.
Thinking of you xx

 

[mrsaligee]

Hi
I have a colleague who was told at her 20 week scan that both her twin girls had a 1 in 127 chance of having Edwards syndrome. Both girls were born healthy.

Good luck hun,

 

[littlenic]

Hello, I've just had an amnio today after recieving 1:130 odds over a week ago. I can't imagine the worry you're going through with two babies in there - i was a mess with just one!

I'm reserving judgement on whether i think the amnio was a good idea until i get past the risky few weeks afterwards. The procedure wasn't pleasant but it wasn't horrific either. Are you having identical or non-identical twins? With my non-identical sister in laws, my MIL had to have an amnio on each sack.

Good luck xx

 

[momtoone]

Hello, I've just had an amnio today after recieving 1:130 odds over a week ago. I can't imagine the worry you're going through with two babies in there - i was a mess with just one!

I'm reserving judgement on whether i think the amnio was a good idea until i get past the risky few weeks afterwards. The procedure wasn't pleasant but it wasn't horrific either. Are you having identical or non-identical twins? With my non-identical sister in laws, my MIL had to have an amnio on each sack.

Good luck xx

They're non-identical, two separate sacks. I never knew just how many expecting mothers were going through the same thing, I knew it existed, but not to this degree of us all feeling helpless and scared. I wish you all the luck and I will be saying a prayer for you and your baby. I feel at this point I have move forward with the amnio, so I am keeping the faith to get through it. My doctors office told me where I'm having it done, it's 1-500 odds of a miscarriage, which are a lot better than the odds I've been given if something is possibly wrong with the babies, so I'll take the higher odds along with a prayer. Good luck, I will be thinking of you, lay low for the next couple of days, I think we are in the clear after a few days of having it.

Hugs!

 

[momtoone]

A positive story for you .....
My odds for a singleton based on bloods and NT was 1:21
We chose to do no further testing. She was born last week and does not have Down Syndrome.
Thinking of you xx

Congrats on your healthy baby girl!!! Such an uplifting story!!

Thanks!! xx

 

[momtoone]

lady on here had odds of 1 in 28 for downs, her daughter was born with downs too.
her story is in the birthing section.
not sure what to say but you're odds are better than hers.
what do they do with the amino test?

They check for any chromosome abnormalities, and because of my age my odds are higher than someone in their 20s unfortunately. This is all new information to me and I have learned a lot in these short two stressful weeks. The amnio is 99% accurate so it will give me a definite answer because the unknown and not being prepared weighs heavily on me.

 

[momtoone]

One of the Mummies in the preemie section was given odds of 1:5 and her little boy did not have Down's Syndrome.


To think about it another way you have a 49 out of 50 and 86 out of 87 chance that the babies will be absolutely fine

I just read your story about Findlay, wow, you have a strong beautiful little boy there! I can't imagine all you and Findlay have gone through, he is so blessed to have a mom like you. He is a blessing from God and I hope you find comfort in yourself knowing how strong of a woman you are.

Hugs to you!

 

[momtoone]

Just try to think positive , I think you have great odds/ Do the Amnio and everything will go great!
Wish you all the best! xoxoxoox

So sorry for your loss!! I collect Angels and have them all over my house, they bring me comfort and peace when I look them. You now have a real beautiful angel above that has touched your life and will always be with you.

Hugs!

 

[maxxiandniko]

Hi. I have fraternal twin boys and had an amnio in early March. The NT measurements and blood results were fine but we did the amnio because of my age (39) and because I did ICSI. I was nervous about the procedure especially since I had to get the needle twice. I personally felt more than the pressure that people describe but it was over relatively quickly and I was so happy that I decided to do it. If the procedure is done by a doc with good experience and you take it easy after you should be fine. And you really will have piece of mind after. Keep us posted!

 

[midori1999]

The screening tests are not reliable in twin pregnancies, so unless your nuchal measurements were really very high, please try not to worry.

I do always pop up on threads like these. My youngest son, who is 7, has Downs Syndrome. I was 27 when I had him, and like many other parents, had ridiculously low odds at the screening tests, which I had without much thought really. I have since declined screening or amnio (automatically offered) in subsequent pregnancies, because I personally think the screening causes a lot of unecessary worry and almost all those I know who's child has Downs did have the screening and got a low risk result. I am not sure what I would have done if I had known during my pregnancy that my son had Downs, but I suspect, due to misconceptions, I may have not kept him. The other reason I won't have screening or tests is that it wouldn't matter to us if I had another child with Downs, my son is wonderful and thank goodness I have him!

Good luck with your pregnancy.