Friday, March 27, 2009

I'm not good with numbers

They were never my friends.  You may find this odd given the fact that I'm a scientist with a Ph.D.  However, my degree is in natural science and the math I use daily is basic algebra.  I can handle that.  Anyway, an introduction to my difficulty in math is not the point of this post.  It is just how much numbers can screw with me.  Especially in light of my pregnancy.  

To this point things have not been easy.  Not counting the last few weeks when everything seemed to be going smoothly, this has not been easy.  Long time readers know what it took to get me to this point.  And then once I got pregnant the beta numbers were super low.  They divided properly but my doctor felt like we would lose the pregnancy and would not get behind it until the 6 week ultrasound when everything looked o.k. on the screen.  Then my progesterone levels were low.  Even on PIO shots, I had to start taking vaginal supplements as well because my numbers were low.  For the first 10 weeks I lived in fear that the next ultrasound would show no heartbeat.  That the spotting episodes were precursors to a miscarriage.  I didn't even admit it hear.  But I was terrified!

So for the last few weeks I've been happy.  Excited about the baby, thrilled with her/his little movements, longing to hold him/her in my arms.  But today the fear came back.

We decided to the quad screen because K's aunt had down's syndrome.  His grandma was older when she had Auntie Edna so we hoped that was the reason.  But just in case we decided to do the more thorough screen to give us peace of mind.  The nuchal test showed little to no chance of downs.  We were thrilled.  But this morning my OB called me and I could tell by the sound of her voice that something was wrong.  It seems once they added in the bloodwork my overall chance of having a down's baby is 1:200.  O.K. now that isn't bad if you think about the chance.  But it is bad considering that in my age group the normal range is 1:420.  That scares the hell out of me.  But even more scary is the fact that we have a 1:300 chance of having trisomy 18.  The norm for my age group is 1:1000.  What???????????  I was fine on the phone with the OB.  She said I should think about doing an amnio for peace of mind and to remember that the quad screen is a risk assessment and not a diagnosis.  But how can I do that.  Especially given that so far nothing about this has been easy.    But then I try to think of the numbers again.  Numbers wise (not comparing to my age group), the risk doesn't seem that great.  It wasn't like I was given a 1:50 chance for either disability.  Right?  Am I thinking about this right?  I told you I suck at math.  And then I think, well with my early beta numbers all the doctors in my RE practice thought that I would lose the pregnancy.  And I'm 17 weeks now.  So..... how can I trust these numbers.  Numbers don't like me.  And I don't like them.

K doesn't want to risk doing an amnio.  I'm not sure I want to either.  But do I really want to just worry until September.  Can I stand it?  What would you do?


Leah said...

I completely understand what you are going through. I'm STILL on P4 supplements and still terrified. My NT Scan looked perfect on ultrasound but the blood work? Not so great. My risk is higher than yours for Down' increased risk for Trisomy 18. I just had an ultrasound and everything looked perfect so far. I'm still terrified though. I opted not to do the amnio. There is a risk of miscarriage and what if we did it and the baby died from it? And what if there was nothing wrong? Even if there was, I wouldn't terminate the pregnancy. You can not depend on the screening alone. I know of a girl who had a 1 in 60 chance of down's, had an amnio, and everything is fine.
Unless you are planning to terminate if your baby has down's or trisomy 18, there is really no need to do the amnio, other than peace of mind. We decided that we would see what our anatomy scan looked like before making any decisions. If there were markers on the scan, we might do an amnio then. But even those markers are wrong. My friend's baby had an echogenic bowel (indicator of down's) and they were worried the entire time. But he is now 4 weeks old and perfect. My 17 week scan looked perfect. I will have another one at 21 weeks and I'm still nervous. But, if they find anything abnormal then, we'll reevaluate. I know you are nervous. Even those moms who haven't had trouble conceiving/miscarriages are terrified. Even with no increased risk, I believe every woman is scared. Try to hang in there. I was really upset for a solid week after getting my bloodwork results. But I've calmed down alot. Give it some time.

alicia said...

ohhh so rough! I am sorry. amnio`s have always scared me, so we decided not to do one. I decided that no matter what I am keeping this baby, so a number coming from an amnio would cause no different course of action for me, so maybe think about it that way! hugs, this is a hard choice for sure

janessa said...

Oh honey... first of all, pat that belly. Give your baby some lovin.

If it were me? I would get the amnio. My DH and I both wanted to know all we could about our baby. We opted for all screening and it's just the way I operate. But, I understand the desire to not put yourself through that.

I'm sending plenty of positive thoughts your way.

Michelle said...

I do not have personal experience with what you are going through but a very good friend of mine did. She got the Amnio and it told her she would have a baby with Downs and she did NOT! She spent a lot of time worrying about it for nothing. I don't no about the Trisomy 18. But I heard with Amnios and Downs there are alot of false positives. So I guess what I am trying to say is you will have to carefully weigh all your options and then decide which is worse...not knowing, knowing, or knowing and worrying for no reason. I am not saying you should not get it but I just wanted you to know what has happened in my friends experience. She said in the future she would not do it because it would not matter to her one way or the other she would still have the baby.

Good Luck and remember you have to take of yourself and do what is best for you and your husband.

S said...

I truly understand that terrified feeling. Its how I spent my pregnancy with my daughter.

And I hate numbers. I hate statistics. Because they always seem to apply to everyone but me.

We didn't need to be in a position to need an amnio (I think our numbers were 1 in 1900 or something, but what happened to our daughter was a 1 in 2000 - bitter irony? indeed.) But our doctor discussed the option of an amnio with us. We decided against it for a couple of reasons that included the risk of second trimester miscarriage or stillbirth (our daughter was born still) and the fact that if there was something wrong, there would be no way I could choose to end the pregnancy because of the slight chance that the tests got it wrong, which happened apparently from time to time. additionally, its an invasive procedure that needs a skilled person doing it. My then doctor spoke of people who had a 1 in 18 risk who didn't end up doing it and their baby was fine.

On the other hand, if our numbers had been 1 in 3...

Having said that.. if this is going to drive you crazy (bad crazy) for the next 22 something (bad with math!) weeks, its about weighing the pros and cons and seeing which decision sits with you both better. Would you consider ending the pregnancy after all this for a 'risk'? What if it was 'confirmed'? Its so difficult to be in that position and I wish you both all the best in making the decision, which would be ultimately yours.

strongblonde said...

this is a hard one. i think about these things every day and have not even come close to the quad screen yet!

good luck. pls try to not drive yourself crazy!! :)


Leigh said...

That is a hard, hard choice.

Like Leah, we would not terminate even if something was wrong so we said we wouldn't do amnio.

I'm 34 but had all the triple screening anyway and my stats were quite good (something like 1 in 2600 for downs and 1 in 4500 for trisomy).

BUT you have to do what's right for you.

Will you terminate if something is wrong? Will you wait?

I'm praying for you!

Jenny said...

I went through the same thing---the quad screen gave an even greater chance that we would have a Down's baby---1 in 6. I opted not to do the amnio, and as it turns out, K was born just fine. Don't believe the numbers----trust your gut.

militarywifealways said...

Oh honey, I am so sorry to hear the news. Why can't things be easier. Since I am not you or K all I can say is do what is best for you guys. You have beaten the odds so far and I pray that you will again. ((((Hugs)))

Marcu said...

I'm so sorry you have to deal with this new worry. So far you have beaten the odds and come out on top. I will send all my positive thoughts your way!!

Kristin said...

I'd probably want to do the amnio. Just to be sure... and then in a way you are better prepared for the birth of a (hopefully!) healthy baby. Could you possibly do CVS instead of an amnio? I heard that it's less risky. Maybe you could ask your ob?