Worried - Down Syndrome Message Board

dreameedayze · 02-12-2006, 07:01 AM

Hello everyone. I am new here, so please forgive me if I sound ignorant. lol

I had my AFP test done at 16 weeks (or so) and just got "the call" that it was positive. I am 24 and my risk is 1:100. The nurse seemed very concerned and the doctor's office scheduled an appointment with the genetics doctor at another facility. The nurse suggested that I get the amnio, but I am TERRIFIED to get it. After years of infertility and miscarriages, I feel that an amnio would be a one way ticket to trouble. (at least for me and my fears)

I did some research online and I am a LOT confused. Some sites say the AFP test is not accurate and some say that it IS accurate. So I am really back and forth on that. I have my Level II u/s on the 16th. The nurse said they will be looking for "soft markers" on the u/s. What exactly would that be? I have had quite a few u/s since the beginning of my pregnancy, and they always said the baby was looking perfect. Now I wonder if they just missed certain signs. I read online that there are more things than Down's that the AFP tests for. Low numbers indicate DS and High numbers indicate Spina Bifida (and other things.) I am not sure what it detected, they didn't tell me. Should I just assume it was DS?

Although I am terrified that something could potentially be wrong, I am coming to peace with it. I know, in my heart, that no matter what, we will love her and protect her. Termination would NEVER be an issue.

So.. I guess I just needed some help here because I am so overwhelmed with information and worries and confusion.

What are the chances that there is something wrong?
What are the "soft markers" they are looking for?
If they find those, does that mean she most likely has DS?
Would I be absolutely STUPID to refuse the amnio wether or not they find something on the u/s?
Should they tell me before I leave if they find something?
IF there is soft markers, where do I go from here?
IF There isn't any, does that mean she is okay or is there a margin of error?

Thank you everyone for helping me.

I am glad I found this place as I was starting to feel very alone.

Jamie

Karen W. · 02-12-2006, 09:57 AM

Hi,
I have a friend whose daughter is pregnant, they had discovered soft makers and club feet on her 3 month ultra sound, the Doctor suggested an amino, she declined, then she had an ultra sound at 4 months, the soft markers were gone but the baby still has club feet, the baby is very active. Now with me, I had a DS son born, had no idea he was going to be DS, Three years later I had gotten pregnant, they suggested I have an amino because my DS son was born 6 weeks early and the first week was touch and go, so they felt it would be a good idea, so I did it, I had to wait until I was 4.5 months into my pregnancy, they inject a needle into the left side of the sack way at the bottom of the sack, kind of in the direction of you hip area, there is a spot in that area that the baby cannot reach because it is to big, they took some fluid and two week later we got the results and my daughter was just fine. When they do the amino, an ultra suond is also being done so they can tell exactly where the baby is. The option is yours? If your extremely stressed out it may be better to have it done because high stress is not good for you and baby but if you fine knowing there maybe a probelm and you just want to wait, thats okay to! How far along are you??
Karen W.

dreameedayze · 02-12-2006, 11:17 AM

Thank you for the amnio info. I am almost 19 weeks. I will be 19 weeks when they do my u/s.

I am just worried that the sac will rupture or I will lose the baby. I have had quite a few miscarriages and the thought of losing this one terrifies me. I dont know.. I guess for me.. I will be happy no matter the outcome. So maybe, I feel like if I lose the baby from the amnio, then I acheived nothing. Because it just wouldn't really matter to me. I would ONLY get it to be a little more prepared when the baby gets here.. just in case. I hope that all came out right.

Jamie

Karen W. · 02-12-2006, 09:33 PM

Hi,
Well I must say I fully understand you point, You've had a rough time with pregnancy and I fully understand the fear of losing this child. No matter what the out come is, you will love this child, if he or she dose have a DS or what ever, you will learn what to do. Now like I had said, I had no idea that I was having a DS child until birth, His first week of life was a struggle for him, I have RH negative blood and my husband is A positive, I had the shots during my progeny to prevent the baby having blood problems but they didn't work, why? I have no idea, so when my son was born, his blood was thick like maple syrup, once he had blood transfusion's of RH negative blood, he slowly did a turn around and he got better. He is the joy of my life, he has taught me to have more patients and he has also made me a better person. He brings smile's to my face everyday, my son is now 20 years old and he is such a funny guy and so lovable, he accepts people for who they are, he finds the good in everyone. Make sure to keep us posted on your next ultra sound, we will be here for you.

Karen W.

angelique5 · 02-13-2006, 10:50 AM

I've had 2 amnios... I think as long as you take it easy, and stay off your feet the amount of time they suggest, everything should be ok!

I think the #1 question you have to ask yourself, before you go any further with testing is, "does it matter if I have a child with a disability?" If the answer is no, and you know you could love any child you give birth to... then maybe the testing isn't that important and can be skipped.

The AFP test is notorious for being flawed. Amnio's, while very accurate, are not 100% either (I had a false positive... was told my daughter had a partial chromosome deletion, and that she would likely die before her first birthday, and I should consider aborting... that wasn't an option for us, and thankfully, because she has NO chromosome deletion, she's now a totally perfect 9 yr old spoiled rotten princess! lol)

All the tests are only as good as those people performing them...so none are foolproof.

So, I would say... take a moment to try to put all of those things aside... and think about your baby... if you know that no matter what you'll have that child... why complicate it with any invasive proceedures... those level 3 ultrasounds are safe, and very detailed...

also, find out about those AFP results, because, you're right, one way is downs, one way is spina bifida...and they are VERY different and your doctors should let you know!