SCREEN POSITIVE.....WHAT?

iVillage Member
Registered: 12-01-2006
SCREEN POSITIVE.....WHAT?
13
Fri, 06-29-2007 - 6:02pm

Hey everyone-
I just talked to my OB and he informed me that my triple screen blood test was "screen positive". He did his best to explain what that means to me, but I think I went deaf after he said "positive" and didnt hear a word he was saying. Im scheduled to see a genetic counselor next Tuesday, and having an amnio on the 18th of July. I am SCARED to death, mostly because I didnt expect this-I have been trying to think positive because I know that stressing out is not good for me or the baby, so I thought for sure hed say something like -your chances are 1 in 250 for having a baby with Down's Syndrome.....what he said was that that was the baseline and anything above that was considered screen positive. My results were 1 in 43.............is that bad??? He did the "glass half full vs. empty" analogy but it didnt work. Statistically he said the chances are 2%, which sounds a lot less scarey than 1 in 43.
I am still petrified and nervous as all hell. This is my 4th pregnancy, the first for my fiance, and I will be 43 tomorrow. What a way to celebrate! :( The ultrasound was reassuring from what the specialist said tho-the NTU that is. The fat deposits behind the neck were considered normal.
Can anyone give me any information of advice about this? I dont know if I should worry or if Im basically getting ahead of myself. The doc did say that for my age, the statistics say 1 in 25, so I guess 1 in 43 is better right?
I need to keep thinking positive but its so hard!

HELP!

natalie

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iVillage Member
Registered: 08-26-2005
Fri, 06-29-2007 - 6:52pm

Natalie,

Try to relax. Most of us had a positive screen with the triple screen. I think anything more than 1/300 is positive and there are aren't many of us with those odds. I think our age is such a huge contributer to this calculation. It does not mean anything is going to go wrong. At 43, we start off at 1/25, because thats just the statistical odds. After they review the blood work, they give you new odds. They can go up or down depending on the bloodwork. Your odds that you will have any genetic problems went down by almost half after the test. Some people's go the other way.

According to your triple screen and your level II ultrasound, you have a 98% chance of having a healthy baby. Those are pretty good odds! In fact you have already beat the odds by getting to your 2d trimester. Thats the biggest hurdle for all of us and you've done this. I know the term positive screen just seems so scary, but I think you have pretty good results. Some of us have better, but some of us have worse. The reality is that unless we get an amnio, we don't know for sure about the chromonosonal abnormalities. Even an amnio does not assure a healthy baby, as there are many things it does not rule out.

Please don't let this spoil your birthday. Your ultrasound looked good and you should concentrate on this. We all worry, but again, we never had any guarantees with any of our children. You had faith your other children would be ok, just have the same faith now. The only difference now, is that they give us just enough information to make us crazy.

I think its just insane for doctors to throw these odds around like we were making bets on the who will win the Super Bowl. I know these tests are supposed to help, but it seems to me, it just adds another level of hell for us to go through. By the time any of us knows anything with any degree of certainty, we are already in love with our babies and every instinct in us wants to protect them. I have a skeptic's distrust of the triple screen: All they are really telling us is "We think it will probably be OK... but you will have to have another test a few weeks later to tell you for sure." The fact that no one can really explain these odds to my satisfaction reinforces my skeptism.


Carole

iVillage Member
Registered: 02-28-2007
Fri, 06-29-2007 - 8:28pm

Natalie,

Your numbers are fine. Write down all the questions you have and ask the genetic counselor when you talk to him or her next week. I always forget what I want to ask unless I write it down.

These tests are just based on statistics at our age and are not diagnostic. There's an 85% chance that they will be right--and 15% that they will be wrong. They're not definitely. You'll get more definite answers with amnio, but as you may have read from some of the other ladies' posts, that can't test for every single thing either.

Sometimes I think having too much information is a bad thing. It just makes us worry endlessly about things we have little control over anyway.

Let me just tell you that I had WAY better numbers than you when I took all my tests...WAY WAY better. And guess what? I lost the baby. On the other hand, my friend who had numbers that were so low even I was worried for her--guess what? She had a perfectly healthy baby that's 3 now! And she had no problems during her pregnancy... She ended up doing an amnio just to put her mind at ease...and the amnio did show there were no problems.

So what I'm saying is, don't look at these numbers and be freaked out. Just by being over 40, they're going to lower your percentages. But plenty of women way older than you have given birth to healthy babies...I think you're going to be one of them, too.

GOOD LUCK! I think your numbers are very good!

Lois

  

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iVillage Member
Registered: 08-08-2006
Sat, 06-30-2007 - 9:24am

Hi Natalie,

I think everyone our age has a "positive" screen. Mine was too. I'm 43 also and 26 weeks pg. I had two Level II ultrasounds and the NT levels were normal. The baby is perfectly healthy except they found a calcium deposit on her heart, which is a soft marker for Downs. But my OB wasn't concerned about it, 5% of all babies are born with it. This brought my odds to 1 in 40. I chose not to have an amnio becuase of the risk of miscarriage. I feel in my heart that she is fine. I think they give us too much info and worry us needlessly. If it will make you feel better then you will know for sure if the baby has Downs or other conditions by having an amnio. But it won't rule out every birth defect. Good luck and keep us posted!

Michele

iVillage Member
Registered: 06-25-2007
Sat, 06-30-2007 - 11:48am
I had a baby with Down's 1/18/07. If there is a chance you are carrying a baby with Down's I would find out for sure. I didn't know for sure. I had a two vessel cord and she didn't move alot and that was all. I wouldn't change anything. I am thankful to have her the way she is, but if I would have known then there wouldn't have been so many surprises that in the heat of the moment were hard to deal with.
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iVillage Member
Registered: 06-27-2003
Sat, 06-30-2007 - 4:03pm

Natalie,
You have received some pretty good advice for the previous posters. When I had my NT ultrasound the measurement was really good. I felt really up until the bloodwork came back and lowered my chances of Downs a little. I opted to have an amnio because I needed to have peace of mind. Everything came back ok on that and he was born healthy. You can discuss that with your doctor, but after having an amnio, I can tell you that it was a very simple procedure. It wasn't painful and was quick. The chance of miscarriage if very low, contrary to what you may think. My ob, who was due 10 days after me said that she wouldn't hesitate to have one if her numbers were suspicious, so that made me feel better.

Try to relax. I know that is hard. I'm sure you will be fine.

Tammy

iVillage Member
Registered: 03-31-2007
Sat, 06-30-2007 - 8:07pm

Natalie,


I had a baby at 40 and one at 42.

Carol, mom to 7

iVillage Member
Registered: 12-01-2006
Sun, 07-01-2007 - 10:16pm

Carole-
I agree with you 100%. And it seems the more I tell people I come across, be they friends or even people I have just met, I feel worse. Screen positive does NOT sound good, but when explained in a way that makes some sense, its not so bad. The doctor told me one in 43, which is better than the statistical chances for my age, so I guess I should be reassured. Youre right as well to say that we had hope and faith that our other pregnancies and children would be alright, and I should have the same feeling about this one. In reality I do, I can tell by the way I am quick to tell people I am pregnant instead of being cautious as I was in the very beginning.

I go Tuesday to see a genetic counselor. Its hard because this is my fiance's first baby, and he has a lot of questions, but his questions are really basic and I feel like I want to know more of the details and technical information. I dont want to deprive him of finding out what he wants to know, but at the same time I just want to get down to the nitty gritty---IS MY BABY OK?

With the information I find out on Tuesday, I will decide if I will get an amnio. My doc said if it were his wife he would, and Im leaning toward having one. That wont happen until July 18 tho, which seems like an eternity. And I know what you mean as well by waiting so long-I do already love this baby and want to protect him or her-what will happen if I am confronted with the choice to terminate? I cant imagine.

Thanks so much for your advice. I was away this weekend and didnt have access to a computer. I wish I had read your post on Saturday so that I could have enjoyed my bday more!

thanks again

natalie

iVillage Member
Registered: 12-01-2006
Sun, 07-01-2007 - 10:24pm

Lois-
Thanks SO much for your post! As I mentioned to Carole, I wish I had read it before today so that I could have had a nicer weekend. I am also very sorry about your loss-its happened to me twice and I know how devastating it can be. I wish you the very best in conceiving and having a healthy pregnancy and baby.

I know what you mean about having too much information. I had an AFP with my son (who is now 12) and it came out really high for spini bifida. That information tortured me to no end-I had an ultrasound that showed no problems, but between the results and the time I had my ulstrasound, I was a mess. Im almost feeling like refusing that test this time.
Im trying to be positive about this whole thing. First off I got pregnant IMMEDIATELY-the first month without protection and WHAM it was preggers. Second this is my fiance's first baby-he is very excited and happy, and it warms my heart to hear him talk about the pregnancy and my tummy---its beautiful. Third, I am more sure about this relationship than I was about my first marriage. I feel more secure and taken care of, and its so much nicer. For all these reasons I think this pregnancy is meant to be, and that it is going to be ok. I need to remember that continously!

Thanks for the advice about writing my question down as well. Youre right, after my appts I always remember that I forgot to ask that one thing, and its usually when Im driving away in the car!

thanks again for all your good advice!

natalie

iVillage Member
Registered: 12-01-2006
Sun, 07-01-2007 - 10:28pm

Hi Michelle-
So with a chance of one in 40 you chose not to have an amnio? Im still debating over what I want to do. My fiance wants me to have one, but maybe after we talk to the genetic counselor he will change his mind. I thought I was sure I wanted one, but I dont know what I would do if I miscarried as a result. It would kill me.

The scarey thing is that my doc told me that a termination is legal up to 26 weeks--thats 6 months along! I could never wait that long, so maybe an anmio at 16 weeks, (which is where I will be---16 and a half) is worth it.

I guess I will wait and see what I find out on tuesday when i see the genetic counselor. One in 43 sounds high, but its better than my age risk of one in 25 right?

thanks for your post and take care!
natalie

iVillage Member
Registered: 12-01-2006
Sun, 07-01-2007 - 10:34pm

Thanks for your post. Ive had people tell me, "Why find out, you would still love him or her anyway right?" which I think is pretty ignorant. I think people mean well, but realistically thats not the way it works.
I work with babies who have developmental delays and their families. Currently I have 3 babies with Down Syndrome on my caseload. Two were born to young mothers who had no idea they were carrying a baby with Down's, and one to a 42 year old mother who knew during her pregnancy. I see the difference in the way they are dealing with things, for sure.
So, I know what you are saying about finding out beforehand.
I hope to get some questions answered on Tuesday when I talk to the genetic counselor. I dont like this "odds" thing, I want to know for sure!

thanks again-

natalie

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