Scary Ultra Screen Results-- Anyone Have Something Similar?

Anonymous
I regret having it done. Mine came back that my son likely had Trisomy 18 and would die in-utero or shortly after birth and in a lot of pain if he was born. I was a sick mess for weeks until the amnio results came back that he was fine.
He is now 15 and a healthy, happy honor student in highschool. He rarely gets ill at all and doesn't even have allergies, much less a genetic disorder.
Anonymous
Don't regret it at all. Knowledge is power. After I got the results of the CVS and found out my baby was normal I could relax knowing that at least I didn't have to worry about chromosomal abnormalities. And if it had turned out that the baby did have an abnormality, I'd want to know and be able to make an informed decision early on rather than being surprised in the delivery room.
Anonymous
Well, I had a very abnormal NT scan. NT measured 4.7 and the peri came in and advised we go right to CVS. We did the CVS and it was normal. After a VERY long pregnancy DD was born in June and appears to be a typically developing 8 month old now.

I wish you the best and I'm so sorry you're dealing with this!
Anonymous
Anonymous wrote:I regret having it done. Mine came back that my son likely had Trisomy 18 and would die in-utero or shortly after birth and in a lot of pain if he was born. I was a sick mess for weeks until the amnio results came back that he was fine.
He is now 15 and a healthy, happy honor student in highschool. He rarely gets ill at all and doesn't even have allergies, much less a genetic disorder.


But the nuchal screen test is not that old - What test did you have done 15 years ago that showed that?
Anonymous
Anonymous wrote:Well, I had a very abnormal NT scan. NT measured 4.7 and the peri came in and advised we go right to CVS. We did the CVS and it was normal. After a VERY long pregnancy DD was born in June and appears to be a typically developing 8 month old now.

I wish you the best and I'm so sorry you're dealing with this!


Oh, and I do regret with the benefit of hindsight having this test done. I let it ruin my pregnancy. Even when our CVS came back normal, the docs still said we were at a higher risk of fetal demise, stillbirth, congenital heart defects (we had several normal fetal echos later in the pregnancy though), and unknown genetic syndromes. I couldn't relax and agonized the entire time over what we might be facing when our baby was born. Not everyone would handle that uncertainty so poorly...in my case I kind of came unglued. For me, once that lid was lifted off the pandora's box I couldn't put it back on.

I would never tell someone else they shouldn't do it though...it's just too personal a decision. Best of luck again OP!
Anonymous
I totally regret the test and did not opt for CVS or amnio. My ultrasounds all looked great (nasal bone present, NT of 1), but my blood work was awful. I had a low PAAP-A too. This was several years ago and I recall reading that women with a low number are more likely to have a boy. Don't know if that is true, but that is what I had.
Anonymous
I am 35 and am scheduled to have the ultrascreen this week. Reading these posts is scaring me....perhaps I don't want to have it done, after all.

This is my second pregnancy. With my first at age 32, we missed the window for these tests....we did the Quad Screen and had a 1:50 risk for Downs. Then we did the Level II ultrasound, which showed a soft marker. I didn't want an amnio. So, it ruined my pregnancy, and my DD was born perfectly FINE! But I still remember asking seconds after she was born if she had Down Syndrome.

Now I am even older 35, so am at an even higher baseline risk for these screening tests. I fear that this will ruin things again and cause more stress. At the same time, I really want to see how the pregnancy is progressing and whether the baby is OK.

Advice? Tips. Anyone out there have a NORMAL ultrascreen result after age 35?

Anonymous
OP, I'm sorry you are dealing with this. We had one of the various tests come back at some point with a 1:10 for DS when I was 34. I would have been able to tell you which test at the time, but time has erased that information from my brain, probably because the whole thing was so traumatizing. We ended up getting the amnio and it came back fine. If we ever have another kid, we have already decided either to just go straight to the CVS or amnio, or just skip the testing all together. The "non-invasive" screening tests are just not accurate enough to warrant the emotional stress. Hang in there. It's VERY common to have screening tests come back abnormal even though the baby is fine. You will have more information soon. In the meantime, surrender yourself to the universe and try to focus on good things.

Anonymous
YES...I just had a normal ultra screen and I am 39 and I also have a toddler who has Down syndrome. For just as many of you who have had "scary" results and then given birth to "typical" babies there are others like me who had ultra screen results within the "normal" range who ended up being the "1" in "whatever".......someone is always that "1"

FWIW.....my special needs child is the light of my life and looking back I wouldn't change a thing. SO many people on DCUM post about how relived they are when they have given birth to a "perfect" healthy baby after being given poor odds. Well....to me my child is "perfect" too. He is so delightful and has made our lives even better. Please try to remember when posting on here that some of us are Mommies to these children that everyone is hoping so desperately NOT to have. Sometimes these posts can be extremely insensitive to parents of special needs children. I know that no one is wishing to have a child with a disability but please remember that not everyone gets their wish.
Anonymous
Anonymous wrote:YES...I just had a normal ultra screen and I am 39 and I also have a toddler who has Down syndrome. For just as many of you who have had "scary" results and then given birth to "typical" babies there are others like me who had ultra screen results within the "normal" range who ended up being the "1" in "whatever".......someone is always that "1"

FWIW.....my special needs child is the light of my life and looking back I wouldn't change a thing. SO many people on DCUM post about how relived they are when they have given birth to a "perfect" healthy baby after being given poor odds. Well....to me my child is "perfect" too. He is so delightful and has made our lives even better. Please try to remember when posting on here that some of us are Mommies to these children that everyone is hoping so desperately NOT to have. Sometimes these posts can be extremely insensitive to parents of special needs children. I know that no one is wishing to have a child with a disability but please remember that not everyone gets their wish.


Hugs, PP
What a great mom....
Anonymous
Anonymous wrote: Please try to remember when posting on here that some of us are Mommies to these children that everyone is hoping so desperately NOT to have. quote]

That is a beautiful way to put it and I think that special families deserve these special children. Enjoy your blessing who I'm certain is a delightful addition to your lives!
Anonymous
22:08 Thanks so much for your post. I too have a special needs child. I did the amino and knew then that he had a genetic disorder and birth defects but choose to keep the pregnancy. I too love my DS more than anything. It was a difficult pregnancy and I did stress about how life was going to be to have a child with a disability but in the end I wouldn't change it for the world. I can't imagine not having him.
Anonymous
Anonymous wrote:YES...I just had a normal ultra screen and I am 39 and I also have a toddler who has Down syndrome. For just as many of you who have had "scary" results and then given birth to "typical" babies there are others like me who had ultra screen results within the "normal" range who ended up being the "1" in "whatever".......someone is always that "1"

FWIW.....my special needs child is the light of my life and looking back I wouldn't change a thing. SO many people on DCUM post about how relived they are when they have given birth to a "perfect" healthy baby after being given poor odds. Well....to me my child is "perfect" too. He is so delightful and has made our lives even better. Please try to remember when posting on here that some of us are Mommies to these children that everyone is hoping so desperately NOT to have. Sometimes these posts can be extremely insensitive to parents of special needs children. I know that no one is wishing to have a child with a disability but please remember that not everyone gets their wish.


I think I understand your point...but I also think it's a little unfair to condemn people for feeling afraid of a prenatal diagnosis of a genetic syndrome. You are now in a postion where you know your child. You have met, fallen in love, been able to experience your little one as an individual. Your toddler is way more to you than a diagnosis. In my personal experience of having a very abnormal NT (the 4.7 above) the uncertainty was what was most difficult for me.


I think it can be very hard for people who haven't even had a chance to meet their child to be given a list of all the challenges they may have. We all have challenges but I think most people kind of hold that knowledge at bay...no one worries too much about what no one can even predict. I think that being given that list of challenges can make it so hard to see the person or potential person first, and the diagnosis second. Some people, through their faith or just wisdom can, but for me, and many others I think it is just a tremendous fear of the unknown. I do try to be sensitive of that and that is why I say my baby is "typically developing" at this point. That's the best way I know how to say that at this time the NT, which pointed to her possibly having a certain diagnosis, was not accurate. Honestly it has been a relief to me that she is healthy and not developmentally delayed at this time. In the grand scheme of things though...I don't think she's any more perfect than your toddler and I'm glad you wouldn't change anything about your little one.
Anonymous
Anonymous wrote:FWIW.....my special needs child is the light of my life and looking back I wouldn't change a thing. SO many people on DCUM post about how relived they are when they have given birth to a "perfect" healthy baby after being given poor odds. Well....to me my child is "perfect" too. He is so delightful and has made our lives even better. Please try to remember when posting on here that some of us are Mommies to these children that everyone is hoping so desperately NOT to have. Sometimes these posts can be extremely insensitive to parents of special needs children. I know that no one is wishing to have a child with a disability but please remember that not everyone gets their wish.


Thanks for posting, PP. I'm sorry that your pov is not represented more frequently on this forum. You said it beautifully.
Anonymous
I had a low PAPP-A score at age 43. The amnio was normal and yes, I was a bit freaked out. But, I did give birth to a normal baby boy who was a little low in birth weight (only 6.11 lbs considering I gained 60lbs). He is now two and healthy enough.

I have to admit, I did not enjoy my pregnancy as much I could have but at age 43 the odds are pretty scary.
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