i need help/advice/encouragement/a realitycheck/ anything...
my dr's office just called about an hour ago...i'm still not done crying...
results from the triple screen came back positive for down's...they didn't give me any ratio...i know there are lots of false positives...but....
they are trying to schedule me for amneo...don't know when. dr is on vacation, i'm leaving the state on friday...don't know what to do...don't know what to say...just feel sad and scared...
Those do have an extremely high rate of false positives. They can look on ultrasounds for other markers, I can't remeber what they all are, I think one has to do with arm measurements, they probably told you all this though.
Try to stay positive about it, I know that is going to be so hard for you to do. I will keep you in my prayers, and please let us know how it all turns out.
Why are you so high risk at such a young age?? Do you have Down's in your family or the baby's father's family? I am 26 and my Dr told me my chances were like below .0001%. You need to question the Dr and ask why you are at such high risk if this does not run in your family.
Also, there is a u/s that they can do besides Amino. It measures the baby's neck. They say baby's with Down tend to have slightly shorter necks or something. I heard good and bad about an Amino. I heard there's a risk, but I never heard of anything bad happening or miscarriage, and believe me, I watch enough TV to see one.
If you are considering not having the baby b/c of this, then an Amino will be your best option cause you will get a very accurate reading.
Talk to his/her father about it and talk it over in depth.
I wish you the best of luck with your decision and please keep us posted with the outcome
i don't know why i'm at such a high risk. it doesn't run in either of our families. i called the dr back and he said that he will perform a sonogram first and possibly amnio if the sonogram shows that there are still great possibilities. my husband does not want to abort......i just want a healthy baby.....
my dr asked if my last period i reported was accurate...i said yes because it was....we'll see i guess...
Asako, I understand where you are coming from. You sound like a strong person to me. I think you will be fine. Like I said, they can tell by the u/s and the bones. You are young and it seams to me your Dr may have his stats twisted! There's NO way, if you nor the baby's father carry this trait, tat you should be that high of a risk. But please, try not to stress, its sooo not good for the little one!
thanks babymomma...i must admit...i was/am definitely stressing...i'm calming down gradually...i lost it for the first hour or so....thanks for your support...i hope everything will be ok...and i will keep you posted...
I chose not to do the testing due to false positives. I am also way to chicken to have an amnio if my results came back positive. But my cousin got a positive result and it turned out she was pregnant with twins. Your hormone levels are higher and that's how they determine a positive result. I hear it's a big mathmatical equation. My doctor told me that of all the many positive results she got last year, in her large medical practice in OKC, that only 2 were actual positives. So that's proof to me that there are many false positives. Now, on the down side, no pun intended, if you really and truly are at risk of having a baby with Downs Syndrome, it is not the worst that can happen. I know it's hard to think of your child having any disability, but I know 2 children with Downs. They are both very beuatiful and very intelligent. One of them has Downs because I believe it was determined her father carries the gene, but the other Downs child I know was a quadruplet, and I dont know why things happen, but one of the Quads died at birth and of them has Downs. They are both very normal, if that is the right word to use. Downs children are so very loving, not that any child would not be loving, but they are truly special. And most down's syndome children grow up, live on their own, go to college, and go to work like everybody else. I hope all this is coming out right. Sometimes it's really hard to express yourself on a message board. Just know that if it is a true positive, everything will be ok. Don't even think of it on a negative note. Put a smile on your face, be positive and just think that you're bringing a little angel into this world.
As a mother of an 11 year old, I know the pain of fearing for your child's life. My daughter does not have Downs, but she had severe seizures starting on her 1st birthday in 1995. She had seizures lasting 45 minutes and longer. She also had a tumor on her heart. Currently, she has not had a seizure in 2 years and she is not even on medication any longer, and she no longer has a tumor. Doctors once thought she had tuberous Sclerosis, which is a life sentence, and I almost died myself because I did not think I could take it if I lost her, but I decided I had to pull myself together for her sake. But now they say she is cured and the cause of her seizures unknown. My whole point to all this, is just that life is full of obstacles and we are here on this earth to tackle them. We choose whether we tackle them in a negative or positive way. Everything happens for a reason, even if we don't know what the reasons are, but I have found out in my own life experiences that if I just have faith, everything always works out. I hope this helps.
Asako i'm really sorry for what u are going through. As a mom to an unborn child we just want them to be as healthy as possible. I have read other posts similar to urs and it really all turned out to be a false positive. I have never read a post in which a triple screen confirmed downs. I never took the triple screen test b/c regardless of the outcome I would never abort. I worked with autistic children and severly retarded children, as well as kids & adults with downs. If I had a choice what developmental disability to choose, I believe it would be downs. They are quite exceptional innocent people. They learn, just like any other child. They interact, show affection. They are just like US!!! Although I am expecting my baby anytime this week or next, I don't stress weather or not my child will have a disability or not. I did before & it's scary not knowing. There are so many things that can be wrong, that we take for granted. I believe everything happens for a reason. Your crying & being upset is normal, becuase its in ur instinct. You want whats best for your developing child. The triple sreen is not a definitive test. Hopefully ur amino will show otherise. Best of luck & my thoughts r with u.
Asako,
I'm really sorry to hear about what youre going through. I'm sure that everything will be ok for you and your baby. This "obstacle"-some people may say- would be considered a blessing to those who can not have children at all. I'm sure that you will love your baby just as much, or more than without this disability. And it is possible that your dr got his numbers messed up. And it is ok to cry. Just don't neglect yourself or your child. Good luck and God bless you and yours.
There is a very high occurrence of false postives in the ultrasounds, AFP's, and other tests. If it is important to you and your husband, get the amnio. It is accurate and it doesn't take that much time to do the test. Depending on where you are, there should be other places to have it done other than the one place that your doctor suggests where the dr. is on vacation. I would not fool around with him doing another sonogram to see if there is still a high risk. That is just my opinion. I didn't want to deal with maybe's: I just wanted to know.
Good luck.
-Jen
Last edited by JenW67; 06-07-2005 at 05:11 AM.
Reason: forgot a word
asako,
Gosh I so feel for you, I went through the same thing about five weeks ago. I was at work when my doctor called and told me my AFP test came back low which was an indication for Downs. My results based on my age (27) should have been 1/1000 and mine were 1/200. I seriously thought someone had ripped my heart out, I so didn't expect it.
First of all I did a lot of research and your age has nothing to do with it. People always say that older woman have a higher chance which is not true at all. Second of all you do not need the stress and anxiety and need to call your doctor and get an ultrasound ASAP! I was told to wait two weeks and my husband told them my emotional stability was at stake and so they scheduled mine the next day. Stress is not good for you or the baby. I remember I lost two pounds in like two days!
Secondly, the AFP test is simply a screening, based on mathematical equations. They take into consideration how far along you are, your age, and the three testing results and determine the outcome. It is notorious for false positives, infact my doctor told me that their office has 85% false positives.
We had to go for genetics counseling and then had scheduled a level II ultra sound and an amnio. It was very scary and nervewrecking but we got through it. The ultra sound took about 40 min because the tech had to measure every single bone. The indicators include: short limbs, a flap on the neck, eyes slant downwards, ears slant downwards, the spine is shorter, and there are many cases of heart problems like murmurs. After the tech took all the measurments she called in the Specialist who took about ten minutes to look over the results. She said there was absolutely nothing to indicate Downs Syndrome. She advised us not to do the amnio as there was no reason for it. Although the ultra sound is not 100% I personally was happy with what they told us. I know in my heart that I could not end my pregnancy especially after I saw my little angel waving at us and opening her legs so we could determine the sex. That ultrasound was the first for us and it just made us love her and made the pregnancy so real and so special. She is our first too.
There are days I too think about the "what if" and it scares me but I know that I have been chosen to bring a special child into this world and be her advocate. I will love her no matter what. Granted we all want our child to be healthy and normal but I have to have faith that everything will be ok.
Let us know how you are doing. The people on these boards are wonderful, I'm glad to have had them when I was going through the same thing. Hang in there, chances are your baby will be fine. I will be praying for you and your family.
I just wanted to tell you a story of my cousin's baby, back in 1996.
The triple screen said positive for down's. So did the amino. So did the ultrasound. She was ready to move on, and abort the baby at 3 months, when my Mother told her she should get a second opinion.
She went to another doctor, and they said there was no way the baby had down's!!! Turns out the people in the lab were idiots!!!
These things can happen...I hope everything turns out well for you and the baby.
Good luck with what ever you decide,
The scan can be a lot more definate than the blood test, There is a LOT of false positive's with the blood test, Putting a lot of people through too much stress just when they don't need it!
Have a chat to other Mum's who have children with down's, It really isn't as bigger deal now as it once was, Treatment and control is a lot better. People with down's can now live long happy lives.
The amnio will tell you for sure, It does have the 1% chance of miscarrage though, The question you & baby's father need to ask yourself is if the baby did have downs (Which is still highly unlikley) What would you do?
Good luck with your decision, I turned down the test as I'd rather deal with anything once the baby's in my arms, As Even if the blood test came back high risk, I wouldn't risk the 1% m/c rate for the amnio, And I personally don't think it's a big enough reason to abort. However, everyone's different, But good luck.
All you can do is do what's right for you, the baby's father & the baby.
Good luck
nes
xxx
I just wanted to add that 1/47 odds may be "higher", but they are still pretty low. We are talking about a 2% chance! Those are pretty dang low chances.
THANK YOU THANK YOU THANK YOU so much for all of your support. SUMI--i remember reading your post a while back...i too did a lot of research but somehow it's still so unsettling....
i still can't comprehend why the risk is so "high" when it doesn't run in my family or my husband's...this is such a confusing and heart breaking time for me. my husband remains optimistic, which is a good thing...but i somehow can't seem to get my mind off of it. I thought of it last night, in the middle of the night, in the morning, on m yway to work, and still...haven't stopped thinking. mY parents too suggested that i get a second opinion...even if I have to pay out of pocket--i just want to know...
I know that this test is supposed to be "optional" but my dr's office just sent me for the test--why exactly, i don't know...prior, i knew that there were false positives...and it's funny, i recently talked to the nurse (last week) and asked if the results had come back and she told me "you can rest assured that if you don't get a phone call, nothing is wrong. i'm sure it's fine" i was so blown away yesterday...i cried for MANY hours...still cried again this morning...
i am so THANKFUL for all of your support and kind words, thoughts and prayers. it means the world to me. It seems silly that just words on a screen could make me feel better but it really does..thank you so much...my husband and i will try to keep our heards up, attitudes positive and hopeful...
Just wanted to share my opinion. At the time of my last pregnancy I was 27, and my tripple screen came back with a 1/78 chance of Downs. I too was devestated, cried uncontrolably, and it was all I could think about. I was searching everywhere for answers, why my ratio was so high, were the dates wrong? I wished I had never taken the test and wanted it all to go away. The tpirrple screen is not a diagnostic test, it is only a screening test. I was scheduled for a level 2 ultrasound and a talk with a genetic specialist. I was also given the choice of an amnio. I went in for the ultrasound and there were no markers for Downs ( I think someone else posted all the things they look for). That made me feel a whole let better. I chose not to have an amnio even before the ultrasound. I would not do anything that put my child at risk, no matter what they say the odds are. We would not have aborted no matter what they had found. On the ultrasound the found that one of my son's kidneys had a little bit too much fluid in it. nothing big, but they wanted to recheck in 6 weeks. So leaving the drs office I felt pretty good and reassured. At the 6 week re-check they found something that was a bit more worrisome. They had seen what they call echogenic bowel, which is a high indicator of Cystic Fibrosis. We have no family history and didn't even really know what it was but again we were devestated. We were again offered amnio, but declined. The chances that this baby had CF were very high so we did all the research we could but hoped for the best. My son was born with a bowel obstruction, due to CF (he was diagnosed at 2 days old), had to have surgery and stayed in the hospital till he was almost 2 months. It is an ongoing struggle. Ceratainly we never wanted this for any of our children but we are firm believers that God gives these things to you for a reason and he will never give you more than you can handle. It has definitely changed our lives but we love our son to death and are so grateful to have him, sickness and all. I guess what I wanted most to say to you is hang in there, you may think you can't handle it but you will find the strength, it is in you. Go to the U/S, talk to a geneticist, and based on those finding make your decision to have the amnio or not. Try not to stress too much. I missed out on alot of the enjoyment in pregnancy because I was so stressed all the time.
And by the way, my son does not have Down's so I don't know where that ratio came from. Another way to look at it is out of 47 babies, 46 will be healthy!
Tomorrow i'm scheduled for u/s and possibly amnio. I went to see my internal med. dr for his opinion--not that he specializes in this area, but to see whether a second opinion was a necessary option. He reassured me to take this one step at a time...he reassured me that the triple screen does not automatically mean i will have a baby with downs syndrome...he also reassured me that the odds are in my favor...it's only a 2.38% chance against me...that means 97.62% chance of a normal, healthy baby...
I'm still worried sick but glad that i am taking the necessary steps to make sure that my baby is ok as can be. I hope that tomorrow, at least from the u/s that i find some good news...thank you for all of your support...will keep you posted.
how many weeks are u . I had the same results they also came back positive and i am very high risk .they did it agine in three weeks and the test was neg itive they got my due dates wrong. the ultrasounds done every month look normal i'm almost 37 weeks.keep your spirts high nomatter what.ASK FOR THE TEST AGINE.
how many weeks are u . I had the same results they also came back positive and i am very high risk .they did it agine in three weeks and the test was neg itive they got my due dates wrong. the ultrasounds done every month look normal i'm almost 37 weeks.keep your spirts high nomatter what.ASK FOR THE TEST AGINE.
according to using strictly dates, i am 17 weeks...i hope everything is ok...thanks
positive for down's.... 
Re: positive for down's.... 
