Friday, October 19, 2007

THE WORNG SIDE OF STATISTICS

It's interesting how most days start out the same way, and progress in the same manner, and then you go to sleep and start all over again. And then every once in a while something happens that stops this cycle short.

I received a phone call from my OB yesterday afternoon. It sent me into a tizzy.

Let's rewind a bit and have a look at some statistics. (Disclaimer: Some numbers may be a bit off- I am not a medical journal- so don't quote me on them.)

First things first: 1/6 of couples suffer from infertility. That's 16.7% of the population. Of those 40% are female related, 40% male related and 20% unexplained. My husband and I are lucky, we are both affected (though he much milder than I).

It's no secret: I suffer from PCOS. With pretty much all the symptoms. It is estimated that somewhere between 5%-30% of the female population exhibits symptoms of PCOS. From this group, about a third of women are annovulatory. Let's be generous and call that 10%. That's me.

The first course of treatment for an annovulatory woman who wishes to become pregnant is the prescription of Clomid. 80% of the women who take this route ovulate and conceive. I'm in the 20% that didn't.

If y'all are following along you will see that I fall into a 2% group of the population. Pretty slim chances of being affected the way that I am, but still, here I am living proof...

In July I finally fell on the right side of statistics when I became pregnant after my 5th cycle of Femara coupled with injectible gonadotropins, and coupled with an IUI (to help my husband's sperm along.) At my clinic the pregnancy rates after 5 cycles is just under 80%. For once I didn't fall into the unfortunate group.

I pretty much thought I had left all the bad stats behind.

Until yesterday's call.

My OB called to tell me that my Integrated Prenatal Screening came back positive for downs syndrome. She broke it down and put it all into perspective for me:
Chance of downs based on my age (32): 1/466
Cut off for a negative result in this range: 1/200 to 1/270
My result: 1/183

I stayed calm by grabbing my notepad and jotting down all the information. I tried to stay focused as words like genetic counselling and amniocentesis and termination were thrown at me.

I realized that there was silence on the phone. "Oh," I said, startled, "you want me to say something..."

I told my doctor that termination was not an option for my husband and I and our baby. So genetic counselling and the amnio were moot. My husband and I had discussed this previously as a "what if" scenario that we thought we would never have to entertain. Our baby is much loved now, and however he or she might be born.

The problem is that I am not the type to stop worrying about something just because it's out of my control. I am very concerned about the test results, and just can't stop thinking about the what ifs. I'm not sure that if I hadn't battled with IF that I would be concerned like this. After all, 1/183 is just slightly more than 0.5%. But one thing that lingers with me as I struggle (still!)to come to terms with my infertility is my ability to continuously fall on the wrong side of statistics.

(PS: Thanks Flygirl.)

28 comments:

sky girl said...

Oh my dear, I hear you. My heart lurched with my own nightmare memories. I had about the same risk as you. A half of a percent but it's still scary isn't it? We went for the counseling, as you know. I found it informative even though I knew termination was not an option we had to decide if Amnio was worth the risk just for the sake of knowing what to expect.

No one deserves to go through this on top of IF. It's not fair.

Try not to let it get to you hon.

mary ellen said...

I am sorry to hear that you are going through this. I hope that this time you fall on the right side of the statistics.

decemberbaby said...

ARGH. I know what you mean about being on the wrong side of the statistics. 0.5% just doesn't feel that negligible, does it?

Sending you hugs and love.

Heather said...

I'm sorry to hear about this. However, I must say that I read a post from this woman who's baby had a heart condition. She said that while she wouldn't have changed having the baby she is SOO glad that she knew for sure and could have all the specialists lined up and be prepared when the baby was born.

It's just a thought. While you are not going to change what you do with the information, sometimes having it can be very powerful. Perhaps they could start with a level two ultrasound to check for markers for downs. That is much less evasive.

serenity said...

Oh damn. No one likes to hear those words in the same sentence, much less from your OB. I'm sorry. :(

But. Statistics are just that, eh? A one in 183 chance of having a baby with Down's Syndrome is still pretty minimal. Which means there's a good chance you fall in the 99.4536% of people who carry a baby which does NOT have Down's.

And your past predilection for falling on the wrong side of statistics doesn't mean that you will on this too.

If it'll help you stop worrying about that .5464% chance, it might be useful to do the genetic counseling, and/or the amnio. That's complete assvice and you can feel free to ignore it, but sometimes more information, regardless of whether or not it will change the outcome, is beneficial.

I don't know. I'm sorry you have to deal with this, on top of IF. I am hoping that this is just one of those false positives you read about.

*hug*

Watson said...

Oh, hon, I am so sorry...

A similar thing happened to us after both our NT scan and our first level II ultrasound! One test was one twin, the other test was the other baby, so we felt we just couldn't catch a break. We also opted out of counseling and an amnio.

Have you asked about the rate of false positives? I've had many friends who got very nerve-wracking test results from blood work (one friend had a 1 in 2 chance of having a DS baby!) but the tests turned out to be incorrect.

I think if you think having a definitive result will help you actually stress less through the pregnancy (ie be prepared) then think about further testing. But if you're fine waiting and knowing that you'll be able to deal with whatever comes your way, then just relax and try not to worry.

And I know -- MUCH easier said than done. But remember, despite everything that's happened, you are still on the right side of the stats.

I'll be thinking of you and praying everything is A-ok!

orodemniades said...

I am so sorry to hear this. I can relate to your thinking the stats were on your side after getting pregnant, I just got my quad screen results and I feel like I've won the lottery with those results. However, I'm still going for a 3D ultrasound next week, to check the heart, etc, so I feel there's still a chance that my tests could come up as false. I don't think they will, but I know it's a possibility.

And no, we will not terminate, either. This might be the only pregnancy I have and I'm not willing to risk not having a perfectly healthy baby because of statistics. We are not doing Amnio either.

I wish I could say something to ease your mind, but I can only relate my own experience and wish you the very best, with the reminder that you've got a great chance of having a non-Downs baby (I feel guilty typing that, as if having a baby with Downs was somehow wrong, or evil, or something, but I don't know how else to say it).

Sometimes I think ignorance truly is bliss. Except when it's not.

DD said...

When we had our first screening back in 2001, the "triple screen" we also got a false positive. It freaked me out so badly and the decision to have an amnio was made through many tears. My son turned out fine.

If I ever get so lucky to again get pregnant, I will not opt for the screening, or CVS, or amnio again. As you said, your decision about the pregnancy would not change so why put yourself through more testing, which all have a rate of error and inconclusiveness?

SaraS-P said...

I am here through Birch and Maple. I am very sorry you are experiencing this. Statistics are never comforting when you are in that unlucky minority.

I hope things turn out well, or as well as possible.

Ann said...

I'm so, so sorry. I, too, am waiting for my blood test results, and since termination is also not an option for us, I sometimes wonder why we're doing the blood test in the first place. It just causes you to worry more.

I hear you about falling on the wrong side of the statistics, but think about it this way. You flip a coin, there's a 50/50 chance of getting heads. Even if you've gotten heads nine times in a row, on the 10th flip, you still have just as much chance of getting tails as you do of getting heads.

Your odds are 1/183. Period. Past successes or failures in the odds department are moot.

Somewhat Ordinary said...

I'm so sorry you have to deal with this now. A lot of previous posters have said some really good points. I've had a couple of friends come out on the wrong end of the statistics and still wind up with perfectly healthy babies.

Try not to let it overshadow the pregnancy and the fact that you are going to be a mother.

Waiting Amy said...

How difficult. I'm sorry. You have heard excellent advice. Hopefully your level II ultrasound will give more reassuring advice. Certainly I've always heard the blood results are the most fraught with false positive information.

Thinking of you and your hubby.

Geohde said...

Oh am so sorry, I would argue that screening should probably not be done if you don't plan to investigate further. I can understand how a reuslt from a test you plan to do nothing about would scare the crap out of you, even if intellectually you know that things are most likely okay.

As you quite correctly point out, 1:20 women will get a high risk screening result (the threshold is set to catch the highest 5% of risk), but only 1 (ish) of them will have a T21 pregnancy. 19:20 are fine. Statistics are evil.

Hugs.

J

(PS, 80% of women ovulate to clomid, but the preg rate isn't 80%, it's only about 40%, i.e. maybe half of women who respond to clomid concieve, if they do it's more likely in the first three cycles than the last 3. But I feel terrible quibbling over such minor stuff right now).

Natalie said...

:( I'm so sorry that you have more things to worry about.... life just sucks sometimes. I really hope that it all comes up fine in the end.

CAM said...

You may feel better with more information and be better prepared with whatever happens. The amnio may be a good idea just to know everything. Thats only my opinion...you and your husband have to decide whatever makes the two of you most comfortable.
:)

Samantha said...

I know what you mean about the statistics. You get used to being on the wrong side of things, so it just becomes assumed. It sounds like their cut-off is p < 0.05 (basically, the change of being completely safe is greater than 95%). Imagine if they decided that the safe level was p < .10. You'd be in it and they would declare you safe! Statistics are funny.

I hope you'll make a decision to do what's best for you, whether it's getting more info or deciding not to worry about it.

Aurelia said...

Mrs.C.,

Having been through this myself, I just thought I'd provide some context. Feel free to email me or phone me or whatever if you want to talk.

If your NT & twelve week bloodwork was fine, then I feel really good about your odds, because those are reliable tests with an extremely low false positive rate, in fact in Toronto at the main hospital where they are done, they have never had a false positive. But if those odds were based on the 16 week triple screen, the toss them aside like garbage, because they are meaningless.

I realize that you do not intend on terminating, but please know that no one ever does intend on doing this to a wanted child. If you come to my blog and click on medical termination, you will discover that Down's Syndrome, like other chromosomal disorders is rarely survivable, and most often fatal. I have several scientific links under Matthew's story that explain what chromosomal disorders are and what the medical implications can mean. 90% of these babies will miscarry or be stillborn. Very few of the ones that survive will be high-functioning like the ones we see on TV. Most will be profoundly disabled, and die early.

Your 18 week ultrasound will tell you more, in fact, it will probably be definitive, and you can decide to get an anmio based on those results.

Something very important to realize is that if your child has a disability that is NOT chromosomal, like a heart problem, or spina bifida it can be operated on at birth, if the surgeons are prepared for it. You have an excellent pediatric facility there, and your baby could be saved if you get the diagnosis early enough.

It's not just about termination, early diagnosis can save lives. Again, if you need anything, ever, just email. I'm happy to talk.

Meg said...

Ms c- I usually just read your blog but I just want to pipe up and say I had the same experience as Sky Girl... high odds for my age range.

I also declined the amnio and was very freaked out about it. WHether he was ok was one of the first things I asked.

But he was.

I have seen this happen sooooo many times.

Erin said...

Ms. C, I am so sorry that you've gotten this news. You're right, the odds are still very small. But we all do know about those odds. It's hard to believe that you might be in the majority for once. I'm hopeful that the baby is fine but sorry that you're going through this scary time.

sariel & shlomit said...

hey girl...as you know i've been lost in my shi.t for the past few days...so sorry that you are having to deal with this...i know a woman (who's first beta was 10 so i've held her in high esteem for some time now!) whose chances of that same baby having down's was really high (i can't remember but something like 50% if that's possible?!?!?!)...she went through much of what i imagine you and the c are going through and her baby was born to term with no down's or anything else (he's 6 now and actually a bit of a wunderkind)....that said, no matter what, you guys will love your beautiful child and be fabulous parents, that i can guarantee....
thinking of you and wishing i could take all this worry away....
peace
shlomit

Thalia said...

Ms c, I can imagine this is scary and horrible to deal with. I'll bow to the more expert voices here and say I'm thinking of you and wish things were easier. Even if you aren't considering terminating, it might be worth it for peace of mind to do further testing, so you know what you're dealing with. Hang in there.

A said...

I am so sorry you're going through this right now.

My thoughts will be with you.

es said...

I have no advice to give, just wanted to say that I'm so sorry that you have to go through this emotional trauma. (It was for this reason that I opted not to do any of the tests). I hope everything turns out all right and I am thinking of you.

May said...

Best wishes - fingers crossed for you.

Anonymous said...

(Visiting from Oro's blog)
This brings back the awful memories for me too. I was given odds of 1:50 of having a baby with a chromosomal disorder based on the blood screening. I had to wait 3 weeks to get an appointment to see a genetic counselor, and those three weeks were some of the most stressful I've ever lived through. Googling brought me no relief, but I still trawled the internet constantly looking for more info. Although I wouldn't have chosen termination, the genetic counseling brought me a lot of comfort (and this was despite knowing more about the facts of the situation than most before I went). I opted for an amnio because I had a friend who was surprised with a beautiful baby boy who has Down's, and I know that I would want to be aware of it before birth.

I'm so sorry you are going through this. I know that trying to look on the positive side of the odds is all but impossible, but I'm sending you good vibes and the hope that you'll find your way to a more peaceful state of mind soon.

jarvenpa said...

I came here from Oro's blog, which I came to via the Black Phoenix forum (just in case you wondered why this strange person had wandered in).
Everyone has said things about false positives and hope and all that (all true).
My youngest child, who is now 18, has Down Syndrome (we didn't have any tests beforehand because termination was not an option for us--and we live in the woods besides). I just wanted to tell you that--though I wish with all my heart that your baby is healthy and without problems--that my son has brought our family a great deal of joy.

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