I Took a Blood Test to Test My Baby for down Syndrome and the Results Came 1/40 - Bronx,NY

With my 3 year old I had that test done and it came back with bad results. I refused the amono so they did a 4d ultrasound. They told me that my baby is likley downs. They gave me theoption to term the pregnancy. I said no and prepared myself for a downs baby. He came out perfect. Most of the time when thoes tests are positive it is a false positive. Look it up online.

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I refused to take that test with all six of my kids because it gave out faulty information so often. I did end up having a child with downs. I can tell you that she was and is a blessing to us and I love her dearly. She passed away. I would not trade my little on for any other child and I am thankful she was in my life. I only wish she could have been with us longer. You will get through this and it is possible to feel joy through it all.

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You need to decide which is better for you. Is it better to know now? How anxious/worried will you be for the rest of your pregnancy if you don't find out now? If you can put it out of your mind (the majority of the time), then maybe you don't need to know now. If you are going to be a horribly anxious for the rest of the pregnancy, find out now.
The blood test is a screening test and many times will indicate possible down's when there is no down's. Just because you have an amnio does not mean you have decide to abort if it's positive for Downs. This is a very personal decision. If you baby has Downs, you can use the rest of the pregnancy educating yourself about Downs and mentally prepare yourself. Your visions of how life will be like after birth will be different if the child has Downs vs. the child does not have Downs. My experience in the NICU is that parents who find out during the pregnancy do a lot of mental work before the birth and are ready to accept the child into the family at the time of the birth. Parents who don't know prior to birth are very saddened. It's almost like a death. It is the death of the dreams they had for the child. Those dreams have to be replaced with new dreams for the child and that takes time. To me it seems better to do that mental work prior to the birth, so the birth can still be joyous, just different expectations.
Having said all that, if having an abortion if the amnio is positive for downs is the right decision for you then you need to give yourself and family that option. Gratefully I never had to make that decision. I really don't know what I would have done. I have an Uncle with Downs. I have seen the responsibility for him passed from generation to generation. I have seen the services available to him change over time depending on the political climate at the time. For me it would have been more about making a decision that would effect my other kids and their kids (my grandchildren) then about how the decision would effect me. My prayers are with you.

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Those tests are not 100% correct all the time. My best friend went through this years ago and opted NOT to have the amnio because at the time I think the chances of miscarrying after the amnio was maybe 1/250? She knew she would not abort her baby no matter what the amnio said, so she opted not to endanger her baby. The baby was born perfectly normal and is now a healthy 12 year old. You have to ask yourself - is it worth the risk to the baby (whatever that is) just to know. What would you do if you did find out the baby had DS? If the answer is that you would continue the pregnancy regardless, I wouldn't have it. Good luck and I'll pray for you.

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Hi K. - my test was something like 1/70 which is statistically equivalent.

Dont freak out yet, those tests only determine probability and are NOT a diagnosis. You'll know for sure once you have the amnio test done. You could also go the route of having a higher level ultrasound done before doing the amnio. I was amazed at how much higher resolution that u/s was able to show us. They measured femur length, checked for extra skin on his neck, checked his brain and then his heart for any calcifications, etc. My son's u/s did show the calcifications in his heart which can be an indicator for Downs but he is perfect - no Downs at all.

Dont freak out - the unknown is our biggest enemy especially when it comes to our kids. If the "worst" case scenario happens and your baby is Downs, then you are going to have a wonderful happy baby and you are going to love him like crazy.

My cousins son James has Downs - he just turned 21 and he had the biggest disco dance birthday party you can imagine. There had to have been 100 people there. I had the MOST fun I've ever had at a party like that. I just couldnt imagine a world without James in it. He has brought so much joy to everyone around him.

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I really like Diana from Burlingame's advice, and want to add that 1:40 are odds - not definitive. Yes, higher odds than expected for your age group, but to put it into perspective, you have a 2.5% chance of having a baby with Down Syndrom, and a 97.5% chance of having a typical baby.

I had 1:5 odds and opted for the CVS (early amnio) so we could make informed decisions and prepare for a life with a special needs child.

I found a world of support out there. If you do have a positive test, I suggest getting in touch with your local ARC http://www.thearc.org/page.aspx?pid=2530 - mine had support groups for parents expecting a baby with Down Syndrome.

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God is going to give you exactly who He wants you to have. Downs or not, there is a reason this baby has been placed in you womb. I could never end my child's life no matter what a doctor says may be wrong with it. Doctors are have amazing technology now, but the honest truth is that medical tests can be dangerous and are not always accurate. I would begin praying for (if you haven't already) this little life that you have been blessed with and let God take care of the rest.

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I always declined extra testing because most of them are not 100% accurate and there is always a small risk with amnio. For me I don't need to know anything before my baby arrives unless it is treatable in the womb or affects my prenatal care or delivery. That really doesn't sound that high to me, and either way babies born with DS do not always require any kind of special care at birth that a "normal" baby does not require. He or she will just need lots of love like any baby born any way. I find it easier for myself to not worry when I'm pregnant and just trust that my husband and I will have enough love and patience for anything. My youngest nephew is a lovely little 10 year old with DS who is a blessing to his family. Do what gives you peace of mind if knowing helps, but try not to worry about anything you can't control.

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First of all, don't freak out. As others have said, this test often screens positive when the baby is normal.

Second of all, the next test I would do, before an amnio, is a level 2 (detailed) ultrasound. You don't say how many weeks you are - I am guessing about 14-16 if you just got AFP results back - but at this point there is a lot they can see on the level 2. They can tell you if there are markers for Down Syndrome, along with a number of other genetic condtions. IF there are markers, then you may decide to proceed with an amnio. If no markers, you can decide to skip, OR you may still decide to have the amnio for peace of mind.

As for these people saying just to accept what God gave you - well, I believe that God gave us scientists and technology in order to arm ourselves with knowledge. I believe that knowledge is power. And I also believe that many of these women who say they would "never" abort their babies have no clue what they would do if they were really confronted with a pregnancy where the baby was extremely sick or terminally ill. Don't let this rhetoric scare you from making an informed decision. This decision is between you and your God, whatever you may believe in.

I wish you luck and hope you will let us know what happens.

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I am 35 weeks along with baby #2 and went thru this when I was 16 weeks pregnant. My test results came back 1/18! Im 22 and was freaking out. I was sent to a perinatologist, and they did a level 2 ultrasound to check for markers for Downs. I didnt have any markers, so they suggested another blood test because my due date might have been off. It came back just as bad as the first. I had the amnio done, it wasnt as bad as I thought. JUst a poke and some cramping. You can get FISH results the day after the amnio that are somewhat accurate but the actual results come back 10 days later. MIne came back fine, thank God. I was a nervous wreck the whole time for nothing, I will never do a quad screen test again. They have very high false positive rates of 65% I believe thats what my doctor said. If your that worried, get the amnio it will give you peace of mind at least. They are 99.4% accurate and the miscarriage rate is 1/400 which makes it very unlikely. You can read my older posted questions on this topic if you would like. Good luck and hope all goes well.

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I had similar numbers. I got a high level ultrasound, from a specialist. My son had no markers, so we opted out of the amnio. My son was born perfectly healthy and still is!

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I chose not to have the tests ran at all with all 3 of my kids..i felt like if God wanted me to be the mother of a special needs child then that was the hand i was dealt..i did not want to go thru my whole pregnancy worrying about it, i would deal with it if the time came .

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You should not freak out. It's only a test and test are never 100% accurate. You can always get a second opinion. Even so, please love this baby with all your heart and soul. He/she needs to be loved just like anyone else. And if it so happens your baby has down syndrome, I would research the condition extensively.

I know several doctors who won't do these tests because they are so often wrong. And if you are not going to abort anyway, why do the amnio and risk complications? Downs is very, very rare.

Updated

I know several doctors who won't do these tests because they are so often wrong. And if you are not going to abort anyway, why do the amnio and risk complications? Downs is very, very rare.

Only you can decide. I guess it depends on what you would do with the
results.

As others have said, there is a high rate of false positives. If you will worry the whole pregnancy then have the amnio. I was between 35 and 40 when I had my kids so I had a little higher risk on some things because of age. I never had amnio but the anatomical ultrasound was very detailed and looked at the heart and face closely and they could say no markers for Down's Syndrome from that. Several of my friends had the amnio and said it wasn't as bad as they worried it would be. One described it as about as bad as the worst blood draw you could imagine (but not worse).

I had an amnio and it was great to know everything was definitely fine! It's the only way to be 100% sure, so I would suggest you have one if you're going to bothered the rest of the pregnancy. These blood tests are not very accurate though -so understand that! Also, ignore those who may tell you if you wouldn't have an abortion that you shouldn't have an amnio. Amnios can detect a number of problems and lead doctors to possibly test for other defects -some that can be helped or taken care of in utero. Also, some babies with Down's or other issues need immediate attention when born by a team of pediatric specialists. If you don't test -you won't know. Some doctors and hospitals even have patients sign "refused amnio" papers so it's in the file in case something goes wrong they can't be sued. I know you're scared, but you'll feel better if you have the amnio and find out for sure one way or another.

How far along are you and did you have the trisomy test done between weeks 12 and 13? A 1 out of 40 chance is rather high, so yes, if you're concerned about having a baby with down syndrome or would consider aborting if that were the case (and I'm not suggesting either way, the decision is obviously all yours), you should get the amino test. Don't freak out about it, just get all the tests done first, and then worst come to worst, you will need to make a decision, which I'm sure will be a very difficult one. Hopefully all will turn out ok.

Good luck!

I had that result too but everything showed as healthy with the amnio. I really do not know why they even do these tests since they are so innacurate.

Two things helped me - I realized that whatever the answer was it was beyod my control. Worrying was not helping - so I prayed a lot and put the problem in God's hands. The 2nd thing that helped was research. Once I stoped worrying I learned a lot about Down Syndrome and what to do IF my daughter had it. It helped me feel back in control because I was taking an active part in preparing for a possible future.

I will pray for you.

I am sorry you have to go through this whether or not it truely it is down syndrome. If it were me I would have the amino test because I would want to know either way. If it was DS I would want and need time to adjust to it and time to become okay with it, if it wasn't DS I would rather know so I would have to worry about it for the rest of the pregnancy. I can't tell you what is right for you, just what I would do if I was in your situation.... :) Best of luck and my thoughts and prayers are with you!

I was suggested an amnio and turned it down those I think are low odds why worry.

I have personally known 2 women who received false positives. This is very common whether or not the doctor will tell you so.

One midwife's office I used to go to called the AFP test, which is the "test" for Downes, the "Always False Positive" because they said it gives false positives so often. And I also know several people personally who didn't score so well on the test, and were told their babies might likely have Downes (some even counseled that they may want to terminate because of it), and then the baby was 100% normal, no Downes. On the flip side, I know at least one person who, after a normal AFP test, delivered a baby who has Downes. The test isn't reliable. I guess, as some others said, you just have to think about your own state of mind--an amnio carries risks--as to the accuracy of the amnio, I don't know much about that. But these things are all things you need to research and consider before making a decision. Good luck to you and congrats on the baby.

Updated

One midwife's office I used to go to called the AFP test, which is the "test" for Downes, the "Always False Positive" because they said it gives false positives so often. And I also know several people personally who didn't score so well on the test, and were told their babies might likely have Downes (some even counseled that they may want to terminate because of it), and then the baby was 100% normal, no Downes. On the flip side, I know at least one person who, after a normal AFP test, delivered a baby who has Downes. The test isn't reliable. I guess, as some others said, you just have to think about your own state of mind--an amnio carries risks--as to the accuracy of the amnio, I don't know much about that. But these things are all things you need to research and consider before making a decision. Good luck to you and congrats on the baby.

Updated

One midwife's office I used to go to called the AFP test, which is the "test" for Downes, the "Always False Positive" because they said it gives false positives so often. And I also know several people personally who didn't score so well on the test, and were told their babies might likely have Downes (some even counseled that they may want to terminate because of it), and then the baby was 100% normal, no Downes. On the flip side, I know at least one person who, after a normal AFP test, delivered a baby who has Downes. The test isn't reliable. I guess, as some others said, you just have to think about your own state of mind--an amnio carries risks--as to the accuracy of the amnio, I don't know much about that. But these things are all things you need to research and consider before making a decision. Good luck to you and congrats on the baby.

Well, if your odds of winning a lottery ticket were 1 in 40, do you think you would win on your first ticket? Probably not. Then again, when odds are 1 in 1,000 or 100,000 there is still the possibility that you are the 1.
What if you get the amnio and it is positive for ds, are you definitely going to abort? If there is the possibility that you will still keep your baby, then you many not want to get the test, as keep in mind, the test itself, can cause problems.