Can we chat about fetal testing stuff? - Page 2

[Astoria]

The newer test, with the sonogram and blood test, is non-invasive, but non-diagnostic. If it raised concern, you'd need an amnio to find out.

I'm not doing any tests except the routine 20 week screening sonogram. I don't have risk factors and wouldn't terminate a downs syndrome baby. I feel like the tests would be anxiety-producing and could lead to false alarm and I personally wouldn't take on the risk of an amnio, so what's the point?

My midwife offered, I declined, no biggie.

[hempmama]

Okay, well, just in case there's anybody else out there this might help, I am doing the standard protocol because I would consider termination, depending on the disorder. We are doing the NT scan and blood tests, and if those come out fine just doing the 20 week u/s. If they show elevated odds, we'll go to an amnio. I feel fine about the risk of miscarriage, and find most of the rumors about the risk of false positives to be just fear mongering. It's a very accurate, very safe test that I am glad is out there if I need it.

My next door neighbor, a close friend, has a child with Down's and is heavily involved in getting expecting parents information about living with Down's since as you all say the information out there is heavily unbalanced. So I've got plenty of information, but I would want to be allowed to make a choice, if the information becomes available to me.

Peace to all of you- I do think OBs sort of railroad us into taking all these tests without anybody stopping to wonder why.

[mommyddeville]

Originally Posted by AngelaM

I know that the triple screen and quad screen blood tests have high rates of false positives, but my understanding is that most of these are due to incorrect dating of the pregnancy. If you know exactly when you conceived, what does that do to your chances of a false positive? My pregnancy happened via donor insemination, so there is absolutely no question about the date.

I'm considering doing the blood test, basically in hopes that it will be negative and put my mind at ease. Probably wouldn't do an amnio even with a positive, if the false positive rate is very high, but I'm wondering how accurate it is if you're sure of your dates...

I knew the exact date of conception for my last pregnancy. My husband and I had had sex once within the possible range for pregnancy for me. . . and I just knew when I'd ovulated, too. I had a false positive (or, rather, a false 'high risk' diagnosis). It was AWFUL. We were so worried for the rest of my pregnancy that something was wrong. Nothing was. My daughter is now sitting next to me and is 100% perfect.

[AKA_PI]

I'm open to testing but not the invasive ones. I'm scared. I do want to do the testing for Down syndrome b/c my child's father would want me to terminnate. I'm not sure how I would feel about that at this point but I would like to know. I guess my thing is, historically all the women in my family have had healthy pregnancies with no issues with the child, I'm 26 and in great health so I wonder if my chances of a child with a disorder are slightly lower but then again, you never know so I don't want to rule it out...

[ashley1972]

We'll do the nuchal test because its so easy and non-invasive. And my understanding is that sonogram together with the blood draw has a very high level of predicting problems - a much lower rate of false positives. We'll go from there. Most likely it'll come back that our chances are 1 in 5000 or something so we'll forgo any more testing. But that is a decision we'll make depending on the results.

[TayTaysMama]

There was never any question of when we conceived my last LO and we received a false positve for downs. The lab messed up the tests somehow. I was told at 16 weeks that the quad screen came back normal and there was no problems. I went back in at 20 weeks and was told that the lab messed up running the 1st test and re-ran it and now I was showing a 1 in 40 chance of the baby having downs. We did the level 2 ultrasound and the doc saw some indications of something being wrong so we did the amnio. I was also told that if we chose to terminate we would have to go to CA because the cut off date here is 20 weeks. Of course it took almost 2 weeks to get the amnio results. That was a horrible wait! All of this to find out that there was nothing wrong with my baby!

I will NEVER do it again!

[MySunflowerBoys]

[QUOTE=Shiloh;10314362
I think I'll just do the anatomical as if it was a ds child they do often have heart issues(?) and stuff that would need to be prepared for ahead of time..[/QUOTE]

Popping in from my Mom's house...

40% of children with Ds have heart complications, not all are detected on u/s. My son has an ASD heart defect and it wasn't discovered until he was 3 weeks old. It is very small and hasn't required medication or surgery, just annual echo's to keep an eye on it.

It is a tough desicion. When he was dx, I immediatly was angry with myself for not doing the blood screening. I thought "I could of prepared myself! What if he would of had major health problems?" As time has gone by, I've realized that not knowing was a huge blessing. I had time to hold and love my baby as who he was before I had to look at him with different eyes that said "he has Down syndrome." When we first were told, it felt like the rug was pulled from under our feet, I suddenly looked at him like he was someone different. It took time to push aside the diagnosis and see the person, but I was grateful to have him and hold him as we grew to know each other.

Every parent I have met that knew prenatally has said that knowing put a great deal of stress on their pregnancy and made it difficult to celebrate the birth. They had so many fears to work through before they could have that time to love their child.

Honestly, they are babies first. They still need to nurse, sleep, get changed and be loved. Infancy gives you time to ease into the diagnosis. My 3 yr old is very much like other 3 yr olds. He gets into mischief, he plays silly games, he wrestles with his daddy and brother, he loves to play with his momma's hair while he snuggles. He teaches us more than we could ever teach him.

[Shiloh]

thanks mama you've made me feel relaxed I might do some of the tests but I won't let that dictate my life. You never know what will happen and that's part of the beauty (and stress) of being a mama. I feel so relaxed now.

[LolaK]

Originally Posted by hempmama

Okay, well, just in case there's anybody else out there this might help, I am doing the standard protocol because I would consider termination, depending on the disorder. We are doing the NT scan and blood tests, and if those come out fine just doing the 20 week u/s. If they show elevated odds, we'll go to an amnio. I feel fine about the risk of miscarriage, and find most of the rumors about the risk of false positives to be just fear mongering. It's a very accurate, very safe test that I am glad is out there if I need it.

My next door neighbor, a close friend, has a child with Down's and is heavily involved in getting expecting parents information about living with Down's since as you all say the information out there is heavily unbalanced. So I've got plenty of information, but I would want to be allowed to make a choice, if the information becomes available to me.

Peace to all of you- I do think OBs sort of railroad us into taking all these tests without anybody stopping to wonder why.

Yup.

[LolaK]

Originally Posted by ~Megan~

The tests can be dangerous and cause miscarriage.

I think when you make statements like this that can cause fear in women who are less informed it is important to be very clear what you are talking about.

The tests that are being generally discussed - blood tests and ultrasounds - do not carry any risk of miscarriage. Since my guess is that you are referring to an amnio which has a 1 in 100 or 1 in 200 (depending which stats you believe) risk of spontaneous miscarriage I really think you should spell it out so that someone doesn't start to panic that their triple screen could cause a miscarriage.

I know that lots of people on MDC would never consider termination and are against all testing but please lets not resort to fear mongering.