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AFP Testing/Downs?


Forum: High Risk Pregnancy

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  #1  
November 15th, 2004, 01:26 PM
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I am 19 weeks pregnant with my first baby. We have been so excited that the "what if's" have never even crossed our minds. I was compltely caught off guard today by my doctor who called and said that he has concerns about my AFP tests.

It seems that I have a 1/55 risk factor of having a down's baby and they are sending me in for an ultrasound and an amnio. I am so scared right now and everything is a blur. I would love advice from anyone out there....
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  #2  
November 15th, 2004, 02:28 PM
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First remember that the AFP is just a screening, it is not a definite test. I don't know if he explained that to you. My dr emphasizes it. It has a high rate of false positives. I've known many people who have gotten them and everything was fine with baby. He's sending you for an ultrasound, is it a 3-D? Probably. There is no risk to that and they can see every single organ, and check everything. And you get to see baby's face before its born. If everything is fine you can ask if the amnio is really necessary. There is some risk to the amnio, there is none to the ultrasound. I had the 3-D with the boys and I will have another one with this baby. I choose not to have the amnio because of the risk. And after the ultrasound they said it wasn't necessary, everything looked perfect. Try not to panic yet, though I know its hard. They also should send you to see a genetics counselor. I will have to go through that too, I'm 37. But you still have a very good chance of there being nothing wrong.
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  #3  
November 15th, 2004, 02:54 PM
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Tina:

Try not to despair. Like the first reply, I can only emphasize that there IS a high false positive rate and it's only a number. It doesn't mean anything is wrong with your baby. Every single woman I know personally who had a questionable AFP result has had a perfectly healthy baby.

I would suggest a nuchal translucency test with expanded AFP. Not all hospitals give them - I know UCSF does and so does CPMC. This is a combination of blood tests and a 3-D ultrasound of the baby done between 11 and 13 weeks to measure the fold of the skin behind the neck. This will give you a more comprehensive result. There are two blood tests done with this as well - several weeks apart. You also interview with a specialist and all those factors together are used to give you a number.

You can't tell enough from just the AFP or Triple Marker.

There are going to be more tests you'll get along the way which only tell you risk factors - they don't mean anything. I highly recommend you read Empowered Pregnancy: The Ten Most Important Things to Know In Pregnancy by Dr. Peck and his wife Vicki Peck. They run a high-risk practice in Wisconsin and the book has an EXCELLENT chapter about pre-natal testing and so-called "risk factors."

The best advice I can give you is to try and sort through the information you get and focus on the objective and positive. There is plenty of alarmist information out there if you want to worry and plenty of people will try to tell you horror stories. Honestly, every single person I know had a very healthy baby.

Read up on nuchal translucency screening.

Good luck and try not to worry...this is to be such a happy time for you all!
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  #4  
November 15th, 2004, 03:14 PM
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Tina: Because I know you are likely pretty worried, I grabbed the book and an article I have and am going to type some of it in here...the first is from "Healthy Pregnancy" magazine (Spring/Summer 2004 issue, page 35).

"...False positives are common. For example, only one or two women in 100 who have abnormal levels will actually be carrying a baby with Down Syndrome. False positives cause anxiety and may result in an amnioscentesis that might not have been required.

From the book: Pg 79 - 80

"...It is not a diagnostic test. No matter how abnormal the test result, a diagnosis can only be made by either ultrasound or amnioscentesis. In order for this test to be accurate, the gestational age of the pregnancy must be known, as this data is an integral part of determining the results. If a woman and her doctor believe she is 16 weeks and she is only in her 14th week, the test results will be wrong...

Your obstetrician may strongly suggest that you get the blood test done. However, he may not tell you about the significant negatives built into the entire genetic testing system. The main problem with the test is the great anxiety which naturally develops when the results come back abnormal. After further testing, more than 95% of those babies turn out to be normal, and thus many parents go through a great deal of unnecessary anguish.


Good luck!
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  #5  
November 15th, 2004, 03:19 PM
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I know - this is my third response - but this is near and dear to my heart - I despise statistics since they can be so easily manipulated, and I have had to deal with all the tests that only give you "risk factors" - like GTT, etc

Anyway - 1 in 55 chance means you have a 98.18% chance of having a HEALTHY BABY and a .018% chance of having one that has Down's...pretty darned low risk, wouldn't you say?
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  #6  
November 15th, 2004, 05:20 PM
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Thank you all soooo much. This is such a scary time and I can honestly say that your posts have been so helpful and uplifting.

You just never imagine that something could be wrong with your baby. I really wish that I had never taken the test. The stress associated with the test is just reaking havoc on me mentally. I know that is not good for the baby at all.

I will keep you all posted on my results from the ultrasound. Please keep me in your thoughts and pray for the best.

Thank you again!
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  #7  
November 15th, 2004, 05:31 PM
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Quote:
Originally posted by tina in california@Nov 15 2004, 08:20 PM
Thank you all soooo much.* This is such a scary time and I can honestly say that your posts have been so helpful and uplifting.*

You just never imagine that something could be wrong with your baby.* I really wish that I had never taken the test.* The stress associated with the test is just reaking havoc on me mentally.* I know that is not good for the baby at all.

I will keep you all posted on my results from the ultrasound.* Please keep me in your thoughts and pray for the best.

Thank you again!
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[/quote]



I am a Mom of 3 oldr kids. My hubby & I just found out we are having his first baby. I was pregnant earlier this year. We were so excited! But I miscarried in May. When I was pregnant back then my doctor talked to me about doing those test for down syndrome. I told him I do not believe in abortion I did not want the test done. I am high risk too because I will soon be 41. Of course I hope & Pray we have a healthy baby. But, I feel it is all in GODs hands.
I will not be tested this time either....My doctor told me alot of times those test come back positive when there is nothing wrong at all anyways.

I hope & Pray all is well with your baby! GOD BLESS YOU BOTH!

Take it easy!
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  #8  
November 16th, 2004, 09:58 AM
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Hey hun you were already told what I'm going to say but the more you hear it probably the better you feel. I know MANY MANY women who've gotten posotives and nothing is wrong with their babies.

I also wanted to tell you that getting an amnio CAN cause problems that you don't need. I know some drs don't want to tell people this and I didn't know if you were aware but perhaps you should study about Amnio's
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  #9  
November 16th, 2004, 10:02 AM
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you can detect downs on regular u/s. It doesnt have to be 3D. They look for a large protruding (sp?) forehead and I belive something with the neck. I can ask my DH exactly what they look for on u/s when he gets home and let you know.
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  #10  
November 16th, 2004, 05:46 PM
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I am scheduled for my ultrasound tomorrow at noon with a genetic counselor. I am really hoping that they will give us the results at the appointment instead of making us wait longer. I don't know how much more I can wait.

Keep us in your thoughts and I will let you know the outcome tomorrow.

Thank you again! -Tina
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  #11  
November 17th, 2004, 06:00 PM
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Everything is PERFECT and I have a very healthy and active baby!

Thank you all for your support during the past few days!

We also got to find out the baby's gender....we are having a GIRL!!!!!!!!!!!!!!!!
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  #12  
November 17th, 2004, 06:07 PM
meant2bemommie's Avatar Platinum Supermommy
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Congratulations!!!!!!!!!!!!!!!!!!!!!!!

Knew in my heart everything was ok!

I just did my AFP yesterday, not that it would change anything but just did it. I
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  #13  
November 17th, 2004, 06:11 PM
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Quote:
Originally posted by tina in california@Nov 17 2004, 09:00 PM
Everything is PERFECT and I have a very healthy and active baby!

Thank you all for your support during the past few days!

We also got to find out the baby's gender....we are having a GIRL!!!!!!!!!!!!!!!!
<div align="right"><{POST_SNAPBACK}>
[/quote]



Oh that is wonderful, wonderful news! CONGRATULATIONS!!!!!!
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  #14  
November 17th, 2004, 06:12 PM
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Congrats, Tina!!!!!

Glad to hear everything is alright with your little princess!
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  #15  
December 10th, 2004, 07:19 PM
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I hate the AFP test. Both times I got results like yours 1/90 and 1/33 and both false alarms. I will not be having it this time at all because it is not going to change anything but my stress level. I'm glad it all turned out to be ok.
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  #16  
December 15th, 2004, 06:47 PM
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I also got false positive results back with my last 2 babies and they are just fine! I wish who ever invented these tests would impove them. I had an amnio with the first which I didn't enjoy what so ever. So when they brought up the amnio with the second I refused and said I would take my chances with having a baby that may or may not be "Normal" as they say. I wouldn't have done anything differently if that test said she postivley did have it anyways.
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  #17  
January 18th, 2005, 07:39 PM
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Thank you so much for this thread.
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  #18  
March 20th, 2005, 10:36 AM
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I am so releived to have read this thread!!! I just had my AFP test on Tuesday of last week and my doctor called on Friday to tell me that my results came back abnormal a 1 in 151 chance so he is sending me for the ultrasound ( course I have to wait over a week due to the earliest appointment was not until the 28th of march) and he wants me to have the amnio too......I really wish that my doctor had explained to me that this test has the high rate of false positive results so my mind would not be racing as much as it has been this past weekend. This i s my first pregnancy and I am now in my 17th week so I truly hope that with this ultrasound all is well as I really am very aprehensive of having and amnio if need be. I think I have vried all weekend for the fear that this test has given me now.
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  #19  
March 21st, 2005, 03:45 PM
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MY CHANCES WERE 1 IN 200.....AND THERE ARE A L;OT OF FALSE POSITIVES.....AND THERE IS A VERY HIGH RATE OF MISCARRIAGE AFTER YOU HAVE THE AMNIO........ASK THEM TO DO A LEVEL TWO ULTRASOUND.....THEN THEY CAN TELL IF THE BABY HAS ANY CHARACTERISTICS.I OPTED NOT TO HAVE THE AMNIO B/C I ALREADY HAVE HAD A MISCARRIAGE....ASK YOURSELF THIS QUESTION....IF YOUR BABY DOES HAVE A DISORDER WILL YOU STILL CHOOSE TO HAVE IT....OR WILL YOU TERMINATE..IF TERMINATION IS NOT A FACTOR.... DO NOT HAVE THE AMNIO DO TO THE RISKS.....
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  #20  
March 23rd, 2005, 07:38 PM
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I don't trust those tests. My twin godchildren were in utero, mom was 15 weeks pregnant when they did the test. They told her the twins HAD downs syndrome and could possibly be mentally retarded. They said for sure they had downs and alsmot positive they will be mentally retarded.

My god kids are 8 years old, smart, awesome, DO NOT have downs, aren't retarded in any way, just mouthy and they know everything. Meranda is in the gifted program at school because she is so smart and Jonathan is MVP for his football team.
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