AFP testing for downs

[Sheri]

hi...my name is sheri and i am 39 years old...recently i received news that my alpha fetal protein test showed that i have a 1 in 28 chance of having a baby with down syndrome...i had an amnio this past thursday, and the women who did the ultra sound to guide the amnio said she didn't see any "markers" for downs...i don't know what to think...does anyone have anything they can offer on this?...i am really confused...thank you...sheri

[Chris]

Sheri,

There are several soft markers that are revealed on an ultrasound for Down syndrome. One is a thickened nuchal fold. The nuchal fold is on the back of the neck. My daughter with Down syndrome did have a thickened nuchal fold that was discovered at my 16 week ultrasound. She also had a heart defect that they didn't discover at that time.

I believe that calcium deposits on the organs can also indicate a possibility of Down syndrome. I don't know the other soft markers. I am sure some other people on this list will help you with that information.

Your baby probably does not have Down syndrome but even if he does, it is not a great tragedy. I wish I could show the world how much my daughter with Down syndrome has enriched my life and the lives of so many other people. She has added so much joy to our family. I am not disappointed in my child, just the opposite. I thank God daily for blessing us with this child.

Chris

[Mama4chris]

Hi I am the proud mother of 4 lovely children. At age 38 with my third child I had the AFP screen done with the 1 in 5 chance of having a child with DS. I had no amnio and did not worry for it was in Gods hands. She was born with out DS. At age 39 I was pregnant with my fourth child and had no testing done. Only the ultra sounds witch showed nothing. He was born with DS. My only regret was when every one said "oh did you know" that I was not able to say yes and it did not matter.

[christie]

SHERI WELCOME to UNO ;D

Just wanted to share my girlfriend was told her baby was at high risk and would probably be born with DS and I was told just the opposite and Hmmmm funny how things work out as my son was born with DS and my g/f's son was not.

Neither of us had the amnio (sp?), but we had every other test they offered at the time, so go figure Just my opinion, BUT I feel as if they have taken all the fun out of being pregnant with all these tests

Blessings going out to you that all will be fine but either way MANY CONGRATULATIONS on your new and upcoming little bundle of JOY

CC ~

[Cbean]

It is very common for false reports on AFP's, so try to relax until your amnio results come back. With all the other tests they offer, I wish they'd just put an end to the old AFP as they make so many women go into panick mode for no reason. If it turns out your baby does have DS, I second what Chris said, it is so not a tragedy. My baby is five weeks old now, (I found out while I was pregnant not by AFP, nuchal translucency PAPP-A then amnio) and I have the healthiest gorgeous little girl who just happens to have a little something extra! 5 weeks - OMG!!! and still in baby euphoria-land! I wish you best we're here if you need us!

[Kristen]

AFP's...boy, what a waste IMO. I didn't even have one with my daughter because the one with my son, born with DS, my risk went from 1 in 1200 for my age to 1 in 2100 according to the AFP - HAHAHAHA!!!! What a joke! They are not very good EITHER way!

As an aside, my kids are 15 months apart, which means Carter (DS) was about 10 months old when the subject of AFP/amnio came up with my doctor. People here will tell you what a wreck I was after Carter was born, but by the time I was pregnant with Syd, I can honestly say I did not care one way or the other. I had no prenatal testing for abnormalities and found myself reassuring my doctor it was okay because I think on delivery day HE was more nervous than I was! Life does change you.

Best luck on a happy and healthy baby!

[Staci]

My AFP with Aidan read 1 in 2,000 chance. I was 22 when I conceived him, had 2 great ultrsounds showing a healthy baby boy, perfect measurements, etc. We were shocked when we learned of his diagnosis, but we wouldn't trade him for the world! He's awesome!

My (ex) sister in law, when she was pregnant had an AFP that showed a 1 in 100 chance of Down syndrome and one soft marker on U/S...she denied the amnio and later had a healthy baby girl, no Down syndrome.

In my opinion, you just can't rely on the AFP...the only way to know "for sure" is with an amnio. The AFP has an accuracy of only about 60%. HTH!

Staci

[Sheri]

thank you all so much for your responses...i feel like my life has stood still in a tortured state of uncertainty for the past 10 days...i have done exhaustive research on the afp test, markers in ultrasound, etc.,...and i've learned that all of those things are just a shot in the dark...i have read stories from women who had great afp results, great ultrasound results and had a baby with downs...i have read stories about bad afp results, bad ultrasound findings and the babies where born without downs...one thing i've learned through all of this is, if it matters, skip everything and do the amnio...the other tests just prolong the stress and anxiety...again, thank you all so much for taking the time to respond to me - it really means a lot sheri

[carolyn]

I would just like to add that no matter how your results come back, Please please let us know! I think everyone on this site feels drawn into your situation and we love to hear the outcomes! It really is a win/win situation- Your'e having a baby! We LOVE babies on this site.

[momofrussell]

HI there, welcome to Uno!!!!

I am probably one of the very few people who's AFP actually was correct. (I was 30 yrs old at the time) LOL... your LMP and if you are regular with cycles and things like that come into play with your AFP.. so that test can be SO false positive and false negative so many times one does wonder why they have it.... BUT.. it's JUST a guide.. it is not a test for diagnosing things... just a guide.

I actually never even ASKED for the AFP nor signed the paperwork for it. I didn't have it with my older daughter so I didn't do it for my son... but the lab screwed up (divine intervention in my opinion) and gave me the AFP test anyway, along with all my other lab work. I got a call from my midwife after the labs came back and she told me it was positive for possible DS. I don't remember the ratio off hand... but my midwife said it was probably false anyway....

I had the Level 2 US and the perinatologist new right away from the markers....nuchal fold, herniated umbilical cord... I had the amnio and it did show Russell had DS. I read and realized there wasn't anything I couldn't handle with this bundle of joy in my "oven" so I accepted it and enjoyed my pregnancy like I did with my daughter! I also went on to have a third child and never had any fears or doubts that this is what it's all about!

Please come and tell us the outcome of your amnio! We are here for you either way!!!! Enjoy the site!!!

A.

[Sheri]

all i can say is, the time i have waited, wondering what is going on with my baby (which has now been 11 days) rates in the top 5 worst experiences i have ever had in my life...i know everyone handles things differently...for me, this has been the equivalent of psychological warfare...i have always said i can handle anything as long as i know what it is...everytime i think about getting "the phone call" my heart rate increases and i have difficulty breathing...plus i'm not happy with the way the clinic is handling my situation...a friend of mine had a bad afp result while she was on vacation (she was 39 as well) and when she came home, there was a message on her answering machine that her ob had bumped up her 20 week ultrasound a couple of weeks to check things out...she knew something might be wrong but her ob didn't have an alarmist attitude about the bad afp result...they just brought her in, did her 20 week ultrasound early to check for other signs of downs and reassured her everything was probably ok...someone even calculated her afp with a younger age to show her that it was her age that threw off her afp result...so after everything was said and done, she was very confident everything was probably ok and opted against having an amnio...the place i'm going to called me, told me i had a 1 in 28 risk of having a baby with downs and said i needed to schedule an amnio asap in case i need to terminate the pregnancy...the nurse made it sound like it was dooms day...i don't know...i feel like this ---> this has been horrible...and i wasn't even offered either of the two tests that can be done in the first trimester...the cvs and another one - i can't remember what it's called...anyway - i think the women's health center closes at 4 (it's 3:41 p.m. my time) so i probably won't hear anything today...sheri

[Sheri]

well i broke down and called the women's health center because i couldn't stand it anymore and i was worried my test results were on someone's desk and they just hadn't called...sure enough - my results were in and they hadn't called...anyway...the early results or "fish" came back negative for all chromosome abnormalities needless to say i am very relieved but at the same time - i feel bad saying that because i know many of the women on this site have children with down syndrome...i mean no offense to anyone and again i want to thank all of you for responding to me and sharing your stories - it really meant a lot to me...thank you so much...sheri

[momofrussell]

Well Sheri that is WONDERFUL news!!!! Please don't think you are offending us by being happy your baby doesn't have any chromosomal anomalies. I don't think you'd be human if you didn't feel like that. And plus, I don't know about the others here, but I don't THINK we all set out and WISH for chromosomal anomalies when we get pregnant and that is why we are here.... we all start out the same, being happy we are pregnant and enjoying the ride, then we find out, either before or after birth, that our child has DS... and we deal with it in our own ways and forge ahead.

Oh... I also wanted you to know that I am very sad someone (the nurse) felt the need to PUSH you into an amnio just incase you may terminate.... Although docs and genetisists HAVE to discuss EVERY EVERY option, pushing a mom to have an amnio that may risk a miscarriage just in case they want to abort prior to the "date passed" to where they then can't, is a bit uncalled for. I don't know how you presented yourself but it seems she assumed the worst already and pushed them on you. I could be totally off base... but that nurse didn't have the right to SCARE you into something. You don't HAVE to have an amnio.

I am sorry the wait for the phone call was so hard. I too had the same waiting game... I don't think I would rate my experience where you rate yours, but I DO know how you felt, waiting for that phone call, wondering, wanting to know either way so you can just deal and move on what ever the outcome.

Take care Sherri and ENJOY the rest of your pregnancy!!

A.

[Sheri]

thank you so much adrienne (my oldest son's name is adrian)

[carolyn]

I am so happy for you! Thank you so much for letting us know- I am sure you will be able to relax and enjoy your pregnancy now. Best of luck to you and the new baby. Don't feel bad about being glad the baby is fine- that is totally natural-we all want the best for our children!

Carolyn