Thursday, August 25, 2011

AFP Tests.

Before I go off on too much of a rant, let me first state my appreciation for modern medicine. Thanks to advances in science and medicine, countless complications have been caught long before they could become devastating surprises. Parents have been prepared. Babies have been saved. So I get it, and I like it. EXCEPT for when a little bit of knowledge causes a whole lotta trouble.

Many of you pregnant women have undergone the AFP screen. It's a simple little blood test that the doctor doesn't make a big deal out of, just a vial and you're done. The screen looks for hormones and secretions and uses math and averages to determine whether or not your unborn baby has an increased risk for certain genetic or chromosomal disorders and syndromes, as well as things like spina bifida and other scary-named stuff. Most of the time, everything comes back normal. Having had two normal screens in the past, I didn't think a thing of it when it came time to do it again. Then I got The Call.

I've been somewhat absent lately. My posts haven't been funny. My Facebook has gone unattended. Even texts are stacking up, unanswered. I've been in hiding. It's how I cope with stuff. Anyways, I got the call just over a week ago that my AFP screen had some back abnormal. Like any normal person, I sobbed and moaned and snotted before I ever even called the doctor back. I was picturing what I thought was the worst case scenario and mourning before I even knew the facts. When I finally got ahold of my doctor, it was way worse than what I had even pictured - the chromosomal disorder my baby had shown an increased risk for was fatal, a death sentence. Before I go any further, it's important to note that the AFP (or tri-, quad-, or quint-) screen is NOT a diagnosis. It merely shows odds that a given baby will be born with these disorders, shows that there's a CHANCE your baby COULD have this. As soon as I hung up the phone, I took to Google, as anyone would, but that didn't help much. The more I learned about the particular syndrome my baby was at risk of, the harder I cried. The kind of cry where your head has to explode to rid itself of the pressure. Where you have to wash the pillow cases the next day. My mom came and picked up my boys so I could sob in solitutde, as is my custom. After I'd napped and fed myself, I was calm enough to Google again, but not trisomies. This time I Googled the AFP test. We all have friends who've had friends who got an abnormal test back, and their babies turned out just fine. It turns out that the reason we all have those friends of friends is because of the 6% of women who get abnormal test results back, approximately 95% of them have perfectly healthy babies. That's pretty insane. That's the VAST majority. That's nearly an A+ in school. THAT'S the reason that many practitioners don't even offer the screen anymore - because there are SO MANY false "positives" that do nothing but scare the crap out of expectant parents. And you know what else? Of the further testing that's available to the 6% of women who need it, sonograms can't rule out or confirm disorders (and only catch 80% of abnormalities), and amniocentesis carries up to a 1 in 100 chance of miscarriage. So if you're told that something MIGHT be wrong with your  baby, your options are to a) MAYBE find out more but potentially leave knowing nothing more, or b) risk the life of your baby with only a 5% chance that something was ever even wrong in the first place. Or both. Not only that, but the screen only has an 80% chance of catching something in the first place - so there's still a chance of delivery room surprises. These statistics have been gleaned from all over, and of course there are going to be different numbers from different sources, but the consensus is all the same - MOST babies are fine, and the test is imperfect.

That dang AFP screen causes so much stress and worry and anxiety - none of which are healthy to a pregnancy. What should be one of the most exciting moments in the 10 months of pregnancy is tainted - sure, you find out what you're having, but under the cloud of fear and the question of whether you can truly celebrate. You're too busy craning your neck to check for markers to get excited. Suddenly gender doesn't matter when you're looking for cysts and omphalaceles. You go through one of the most terrifying interviews you'll ever experience, a meeting with a genetic counselor. You sit FOREVER in a waiting room with other mommies-to-be who are just as scared as you are. You do some rough math and wonder which one of you will be the statistic, the one to get the bad news. All the Zantac, Tums, and Mylanta in the world can't settle your stomach. Once we got The Call, many of my friends offered up that they don't even participate in the screening, that they refuse it because of the number of false "positives". This being our last baby, I can't make such a noble stand next time. My own doctor told me that he gets about 5 abnormal test results a week, and in 20 years has had only 6 babies actually have something wrong. I hesitate to use the word "wrong", because each baby is a miracle itself, just as much of a blessing whether they have 10 toes or 5, smooth lip or cleft palate. Whether they get 80 years or 8 hours, a baby is a life and has a purpose.

After a week of stress, tears, fear, insomnia, and being unsure of how much we could celebrate our coming baby girl, we finally made it into the specialists office and onto the sonogram table. Praise God, we were on the majority side of the numbers and there are no signs at all on ultrasound of the disorder in question for our baby. But it took a week to hear that. And some parents wait longer. And go through more tests. And SOME parents don't get the same good news at all.

I'm sure that the roughly 5% of parents who do end up getting bad news that something has gone awry are deeply grateful to the tests that warned them. It takes a certain call and heart to be a genetic counselor, to sit across from terrified parents and attempt to explain to them what could go wrong. I am so thankful for the wonderful doctor performing the sonogram, who puts herself in the messenger's shoes and has to be the one to tell parents when she sees something that shouldn't be there... or doesn't see something that should. It's a dark, lonely, scary side of obstetrics that not everyone sees... but thanks to the AFP test, many, MANY more women than should do see it. Don't get me wrong, I am so glad that medicine has advanced to the point of being ABLE to detect such anomalies. I just think that if it's to the point where we can pee on a Dollar Tree stick and find out our lives are about to be changed, can't that test be improved on a LITTLE BIT?

I was too stressed to eat, to sleep... and that's saying A LOT.

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