Seeking Advise "Diagnosed down Syndrome Test Was Possitive".

Updated on October 03, 2008
A.A. asks from Orange, CA
9 answers

Hello, Ladies
My sister-in law just got her results back from the test to see if the baby had Down syndrome and it was positive they told her not to worry and that they are going to be doing more test, as well as a 4D ultrasound. She is currently 14 weeks pregnant and very confused. Has any one gone through this what happened? Was it accurate? What did you do? And most importantly what should I do in this case. How can I show her support. Even if the test are right she is I would really appreciate any help I can get. Thank you

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J.C.

answers from Los Angeles on

A friend of mine's sister had the same diagnosis, but kept her baby and the baby was born perfectly fine without any signs of Down Syndrome. The child is a teenager now and doing very well.

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S.P.

answers from Los Angeles on

Hi A.,
I haven't gone through it personally, buy my teaching partner just went through it a couple months ago. Her AFP came back positive, but for some reason they did it again. At that point, it said there was a chance her baby would have DS. She did the blood test and they said there was a 90% chance the baby would have DS, which is the highest % they can give from the blood test. Against her beliefs, she went ahead and had the amnio. Here she found out that her baby does not have Down Syndrome. So a positive AFP and blood test, is not 100% accurate. All you can do for her is be there to listen and let her know that it's alright to have all of the emotions that are going through her head. Good luck.

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W.S.

answers from Los Angeles on

Hi A.~
I am sorry that you and your sister in law have to go through this. I have been on both ends, with my third child I was told "could" have DS and I had the 4D ultrasound and everything looked fine and the Perinataliogist was not concerned, they offered the Amnio, but I refused it as my beliefs are that I would take whatever God wanted me to have. When she was born, she was/is perfect and had nothing wrong!

A girlfriend of mine had the AFP come back normal and all ultrasounds showed nothing was wrong and she delivered a DS little boy, who is now 8 years old and everyones sweetheart, he is amazing, but had she known, he might not be here, so they are thankful now that the test was wrong.

My best friends brother and his wife just had the AFP come back positive and the Dr. told them they had a 90% chance of their son having DS so they did the ultrasound and it looked normal but they went ahead with the Amnio anyway and their baby does NOT have DS.

The AFP is SO inaccurate I don't know why they are still giving it. I did not even do it with my fourth it is such a ridiculous test! Just remember to support her by not saying nothing is wrong, but that you are there for her through this process, also, don't encourage her fears right now by accident by saying "this is awful" "I could not handle this", etc. I know that when my girlfriend delivered her sweet boy with DS unexpectedly, she said the worst thing she heard was "what are you going to do, I don't think I could handle this" I know people probably did not realize how insensitive that was, but it really hurt her.

Take care & God bless you and this sweet unborn baby!

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S.M.

answers from Los Angeles on

The test she had comes up with a 'statistic' not a definitive diagnosis. Depending on whether there are any markers with the 4D ultrasound they will offer an amnio for a 'diagnosis' so at this point she only has a 'greater chance' that her baby has Down syndrome...and the 'false' positives are very high with the screening tests..the dr. knows that and that is why they told her not to worry.
I have a son who will is celebrating his 15th birthday this weekend---he was born with Down syndrome...there are 50 RSVPs to his party so far. Life does not end when a baby is born with Down syndrome. Please see this website for YOU to know what to say and do for your sister:
www.leeworks.net/DDS/speech.html
And for your sister, tell her not to ask ANYBODY who doesn't have a kid with Down syndrome what to do, including the doctor...they don't know that ALL kids are blessings and life is still awesome and filled with purpose even with an extra chromosome. Please feel free to email me with any questions, and that goes for your sister too. ____@____.com
S. McElwee

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D.A.

answers from Los Angeles on

Hello A.,
I went through the same thing... it was very hard for my husband and I. I went through all the test, ultrasound and amnio. It was the longest 9 days of my life. Please do some research. The test has a VERY HIGH false positive result. I have read some reasons why the test are more likely to be false if you are carrying a boy or having twins. My son was born March 08 and he is perfect (besides him not being a good sleeper =)) My heart goes out to her!!! I am sure the baby is fine. If you have any questions please feel free to contact me.

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H.S.

answers from Los Angeles on

Dear A.,
I never was tested when I was pregnant with my last child because I didn't want to know if the baby had Down's syndrome. I would accept what God gave me. Children with Down's can be a blessing and a joy to have. They usually are relatively high functioning...can dress, feed, toilet themselves. They can be taught to do chores around the house and often can work stocking shelves or routine jobs in stores. When I taught in special education I found them enjoyable and usually happy and outgoing.
I do not know your position on abortion, but I believe every child is created by God and precious. I would support her by encouraging her to relax and accept whatever happens. When the baby is born, treat it as you would any addition to the family and involve her and her child in activities with you and you baby. You can also read up on Down's syndrome so you will know what to expect with the special child. http://www.nads.org/ would be a good place to start...particularly the one on prenatal diagnosis which is under News and Articles.
Sound like the test might be negative. I think you received some good advice when I read through what others said.
I wish your sister the best during her pregnancy and her delivery. May God bless the baby.
H.

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T.P.

answers from Los Angeles on

Hi A., The AFP test has MANY false positives!! Alot of different things can effect this, dumb things..like the answers to some of the questions they ask you on your first appointment.You see they take all of this into consideration when inputing info into computer to read results.My daughter's test was positive and it freaked me out.I was so upset..already preparing myself on how to raise a baby with down syndrome.Until I heard from so many people that they had false positives.My husbands cousin also had a positive result,went through all the tests including an amnio and they told her that her daughter may have down syndrome.. her daughter was born absolutely healthy! Go online and research it.Good luck!

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C.C.

answers from Los Angeles on

My friend's sister went through this and was also told that her baby had down's. However, the test was WRONG! She decided to do no further tests and just prayed and waited it out. They have a beautiful, healthy, little girl that is VERY BRIGHT.

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L.W.

answers from Los Angeles on

Only 14 weeks? They're not supposed to even know the sex until 18-20 weeks. I doubt it is accurate and question the practice she is going to. They should really inform her about her choices to even do such tests since they are normally invasive and potentially harmful. Plus ultrasound supposedly is not "safe" for the fetus since it is high frequency sound waves boucing off the fetus, who is developing his/her ears and hearing, etc.

Anyway, when I got my 18 week ultrasound (I didn;t get anymore after that) the doctor was able to measure the distance between my baby's eyes. It's usually an indicator for down syndrome if it measures longer than 3 or 3.5 cm, if my memory serves me right. Anyway, tell her not to worry. It's way too early and those type of tests give lots of false positives.

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