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Positive AFP for possible Down's


Forum: High Risk Pregnancy

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  #1  
February 24th, 2005, 12:27 PM
Regular
Join Date: Feb 2005
Posts: 5
Hello,

I just turned 34 and am approximately 20 weeks pregnant. A week ago I found out that my AFP came back positive for a higher risk of Down's Syndrome. I spoke to a genetic counselor last Friday and had a 3D ultrasound with a Perinatologist (Spelling?). My ultrsound was perfect and no defects were shown. My baby was very active and the Docotr said he did not see anything that suggested DS. However, he could not rule it out as he said an ultrsound is not always a good indicator of a chromosomal anomaly. This news left me with the same 1/130 chance of DS and an amnio was the only way I would know for sure before the birth. I chose not to do the amnio as I am having the baby no matter what happens and don't want to risk a miscarriage.

I have been reading a lot of information regarding ultrsound and DS. I have noticed that most women on the message boards feel that all is well if the ultrsound is negative for DS symptoms. All the reserach I have read says that it is not a good indicator as it can miss symptoms. I would like to know of any other women out there that have a similiar story as well as any information contradicting my info. on the ultrsound diagnosis. As any mother or mother to be knows, I am very concerned but try to focus on the fact that my odds are 99.3% that I will have a healthy baby. But I am also realistic that I could be the .7% also.
I would really appreciate any information you might have or encouraging stories as I am only half way there and have along time to think about the outcome.

Thank You,
Tracy
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  #2  
February 24th, 2005, 01:51 PM
LadyBelle's Avatar Platinum Supermommy
Join Date: Jan 2005
Posts: 10,125
(hugs)I too am going through this. My chances where 1/220 and after an unsucessful 3-D u/s (they couldnt get good pictures of everything baby was on tummy)I had the amnio.They gave me a 50% chance of Downs so I did have amnio.The specialist aka high risk ob does upwards of 100 a month so I felt comfortable having it.U/s only detects 60% of Downs cases where as amnio rules it out at 99.5%.I get my results Monday 2/28.

On an up note with dd#3 had a positive AFP for Trisomony 18 & she is a healthy child no sign of a birth defect. The chances where 1/120 with her.I had amnio with her also.

I total understand your fear of amnio & think it is a personal decision.I would worry more not knowing & feel that would harm the baby more than the amnio.
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  #3  
February 24th, 2005, 02:21 PM
Regular
Join Date: Feb 2005
Posts: 5
Quote:
Originally posted by LadyBelle@Feb 24 2005, 12:51 PM
(hugs)I too am going through this. My chances where 1/220 and after an unsucessful 3-D u/s (they couldnt get good pictures of everything baby was on tummy)I had the amnio.They gave me a 50% chance of Downs so I did have amnio.The specialist aka high risk ob does upwards of 100 a month so I felt comfortable having it.U/s only detects 60% of Downs cases where as amnio rules it out at 99.5%.I get my results Monday 2/28.

On an up note with dd#3 had a positive AFP for Trisomony 18 & she is a healthy child no sign of a birth defect. The chances where 1/120 with her.I had amnio with her also.

I total understand your fear of amnio & think it is a personal decision.I would worry more not knowing & feel that would harm the baby more than the amnio.
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  #4  
February 24th, 2005, 02:29 PM
Regular
Join Date: Feb 2005
Posts: 5
Quote:
Originally posted by Tracy+Feb 24 2005, 01:21 PM-->
Quote:
<!--QuoteBegin-LadyBelle
Quote:
@Feb 24 2005, 12:51 PM
(hugs)I too am going through this. My chances where 1/220 and after an unsucessful 3-D u/s (they couldnt get good pictures of everything baby was on tummy)I had the amnio.They gave me a 50% chance of Downs so I did have amnio.The specialist aka high risk ob does upwards of 100 a month so I felt comfortable having it.U/s only detects 60% of Downs cases where as amnio rules it out at 99.5%.I get my results Monday 2/28.

On an up note with dd#3 had a positive AFP for Trisomony 18 & she is a healthy child no sign of a birth defect. The chances where 1/120 with her.I had amnio with her also.

I total understand your fear of amnio & think it is a personal decision.I would worry more not knowing & feel that would harm the baby more than the amnio.
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Thank you for your reply. About 10% of me wants to have the amnio so I will know for sure. But I have had a rough pregnancy with cramping and several colds this winter so I thought the amnio might not be such a good idea. I will probably talk it over with my OB and see what she says. Thank you for the encouraging stary about your daughter. Most people I know have an AFP horror story that ends well. I keep praying that mine will end the same. I hope the best for you and your baby as well. I would love to know the outcome of your amnio if you are comfortable sharing. Thanks Again!!
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  #5  
February 24th, 2005, 04:27 PM
LadyBelle's Avatar Platinum Supermommy
Join Date: Jan 2005
Posts: 10,125
I want to invite you to the July due date club if you havent been.The girls there are great!I will be sharing the results good or bad he is my baby & I love him no matter what.
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  #6  
February 24th, 2005, 04:31 PM
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Join Date: Aug 2004
Location: Indiana
Posts: 9,769
hi hun! *hugs* first off I know people who have tested + for their babies having downsyndrom EVEN in the amnio and it being negative. I wouldn't risk it especially since there's a big chance even the amnio will be wrong
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  #8  
March 4th, 2005, 08:26 PM
Missy's Avatar Super Mommy
Join Date: Dec 2004
Posts: 510
Ill copy here a few of my posts from before. I went thru the same thing last month.

"The Doc left me a message with her pager number, when she finally called me back (only a few mins long however felt like hours). She said my quad test came back. This was the last bloodtest i had done, testing for down syndrom. I'm not sure if it was positive or negitive, all i know is its the bad kind. I couldnt listen to her fully, i was reeling and trying to drive. I have a 1 in 46 chance to have a down syndrom baby. My father *math matician* says thats about a 2.5% chance. She said her office will call in the morning with my appointment time for the specialist. This will be a level II u/s. I'm only 27 so that level II wasn't going to happen. If this test doesn't tell us more, or still says the same... i have the option to get an amnio. We all know there is risks with an amnio. "

and the results.....

There were no signs of Downs in the level II u/s. We got clear shots of everything, and that was enough for me. I did not go ahead with the amnio. I did TONS of research on this, and see most often they are false positives. I also learned that its only a test screening YOUR body...not the actual baby in it. If that makes any sence...it made me feel better. also in this forum there is a thread that helped me loads....look down a bit.
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  #10  
March 5th, 2005, 07:13 AM
threeboyznme70's Avatar Veteran
Join Date: Mar 2004
Posts: 1,280
the older you are, the more inaccurate the AFP is and the smaller window of opportunity to get an accurate test. If they are off by evena few days it really messes the test up. The OB that delivered ds1&2 didn't even do them. He offered them and never recommended them. When I had ds1, he'd never had a parent go ahead and do one. He said that they were just too inaccurate to determine anything. On a good day, it has and 80-90% false postive rate. For this very reason, when I was 33 and pg for ds3, I refused the test. Why go through the heartache of worry for something THAT inaccurate. Mylast ob offered it but didn't bat an eyelash at the fact that I refused it.

I think with a good ultrasound ... even a level 2 is pretty accurate, so if you had a 3D, you're probably pretty safe to let out a sigh and relax.

Best Wishes!
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