Sunday, August 03, 2008

About those pesky test results

I participate in a bulletin board for parenting special needs children. Actually, for several years, I moderated that forum. I gave up my moderator duties last year after a long thought process ~ mostly related to my own illness and ability to participate as fully as I thought I should.

Through the years, the most frequently asked question(s) on that board were about pregnancy and test results ~ a pregnant woman would turn up with an abnormal nuchal translucency screening, or an elevated Triple Screen result, and would immediately focus on Down syndrome (Ds) and the risks associated with it (heart defects, etc.) In pain, full of fear and anxiety, she would post her questions to the board, and pray for reassurance from the "experienced" moms ~ those of us who had "the worst" happen to us ~ an imperfect child. (Of course, that isn't the worst thing that can happen ~ babies die, and so do children, and so do beloved adults ~ that is the "worst" that can happen! Still, most people don't know that, so to them, the thought of giving birth to a child with a handicap ~ or multiple handicaps ~ is "the worst case scenario".)

I wrote the following in response to such a mother-to-be. After extensive Level II ultrasounds, she decided to forego an amniocentesis, and felt resolved to love her child regardless of the outcome of the pregnancy. These are some of my thoughts on that process:

I couldn't say it any better than *name deleted* and *another name deleted* have, so I won't even try. I know many, many children with Ds (and even more with other syndromes) IRL, and the vast majority are healthy, happy kids with great lives, full of things and people that they love.

Just so you know, too ~ Ds is not the only possible explanation for test results that are "off" ~ many (most?) tests provide high numbers of both false positives and false negatives, and the vast majority of birth defects are not even *tested for* in utero. I'm not trying to scare you ~ I just want you to be aware that even if you have "perfect" results during prenatal testing, you can still have a child with differences that are noticeable at birth or later. My Maddy is 11 years old, and with the u/s technology that was available at the time, and no history of birth defects in our family, plus a low-risk singleton pg, her prenatal diagnosis was completely and utterly missed by my OB-Gyn. He was surprised by her upper limb anomolies, as well as her heart defects, in the OR during my C-section. She was diagnosed with Cornelia deLange Syndrome a few days later in the NICU. While I won't classify her as healthy (she is "medically fragile") I will call her the best, most wonderful person to ever come into my life.

I'm actually glad that I wasn't aware of what was in store for my family ahead of time. I was able to enjoy my pregnancy until nearly the end, and when we finally came home from the hospital with my much-wanted and much-loved baby girl, we were all thrilled to the core. Had we known ahead of time, I would have had anguish over her health, worry about what was to come, etc. Sometimes, ignorance is least in my case at that time. Even if I had known, I would have carried her for as long as possible (she was early ~ 34 weeks) and loved her ~ but I think that it would have been harder on me, personally, to know about the trials we had coming. Before her birth (and the sea change in my personality that occurred in the year or so afterward) I would have literally worried myself sick over the "what-ifs".

Now, I am a big believer in making the absolute most of every moment of every day ~ including really crummy days that are sometimes overfull of anxiety and fear. I can center myself no matter where I am by reminding myself of the absolute gift that is one more moment to hold and love my child on this earth. So many don't get that ~ or only get in for a few months in the womb, or a few moments after birth. We've had 11+ wonderful years, so far, and while I don't look too far ahead, I know that loving Maddy has strengthened me in ways that a typically developing child would never have done. Her life is anything but wasted ~ she attends school, has friends, has a loving family, and laughs every day. She is funny, loves a good joke, and has the best smile you've ever lights up her whole face. Yes, she is severely handicapped. No, it doesn't make much difference to her. As far as she's concerned, we're the weird ones, what with all those fingers, and why on earth should she walk when someone can carry her? She uses adaptive signs to communicate with us, and when we're a little slow getting her message, she gives a thoroughly exasperated look and sighs at us. Yes, she is a pre-teen.

Anyway, enough about my girl. I hope your pregnancy is completely textbook in every way, and that your little one is healthy and whole and has all fingers and toes. If not, and the "worst" happens ~ trust me, it isn't the worst, as long as your baby is born alive and comes home with you. There is life after diagnosis (of whatever kind), and while it may be a different life than the one you are imagining now, it's no less wonderful, I promise.

I'm thrilled to be Maddy's mom, and I wouldn't change ~ or miss ~ a thing about this life that we were given.

1 comment:

Heidi @ GGIP said...

I think it is wonderful that your friend made the decision to love her child no matter what! This is the most important thing, whether you choose to do testing or not.

I come from a completely different perspective. I used a lot of prenatal testing and understood much of what was going to happen and what safety measures could be taken at his birth. While I completely understand the other perspective, I am very happy that I knew ahead of time. By the time he was born, all the denial and anger was finished.

Thank you for sharing this story. It is always helpful to learn different perpectives:)