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This is my editor's note for my Sept/October issue of Kidaround. Timely and crazy, considering McCain's nominee for vice president is a mom of a baby with Down syndrome, Sarah Palin. I am so excited for this next issue to come out, look for it September 1! ~ Barbara


There I was, shopping in Payless. I can still smell the pleather as we rang up some Thomas the Train sandals when something else rang: my phone. As soon as the woman on the other end of the line spoke, I knew it wasn’t good news. It was the genetics counselor.
  
Two weeks prior, during my second trimester, I was at my OB’s office. “Do you want to take the AFP?” he asked of the elective blood test that screens for various defects like spina bifida and chromosomal issues. He told me of the AFP’s fluky nature. “You’re 35, right at the age where this test is more likely to give a false positive.”
   
I’d taken it with my three previous babies and never had any issues come up, and it was free, so I said, “Sure. Why not?”
   
Here’s why not: So I don’t get a call from the genetics specialist halfway through my pregnancy. What did she tell me? “Your AFP result came back positive.”
   
After doing the mental math (is positive bad and negative good, or the other way around?) everything was kind of a fog. I do remember—clearly—her saying, “Your test screened positive for Down syndrome, one in ten,” which meant that one out of every 10 women with similar hormone levels will be carrying a child with Down syndrome. That’s not bad, I thought. There’s a 90 percent chance that there’s nothing to worry about. Then she told me that these are the highest odds the screening test can give. Ouch.
   
Google AFP and the first thing you see is “simple blood test” and “recommended by the State of California for all pregnant women and can detect if they are carrying a fetus with certain genetic abnormalities.”
   
Again, I was reminded that this was a screening test, meaning my baby simply had an increased risk. However, the next step would be to come in for a second-level ultrasound, where they look for physical markers like shortened femurs, heart defects and a thickened nuchal fold.
   
The geneticist then recommended I have amniocentesis right away if I wanted confirmation and the chance to terminate my pregnancy (I think I was running up to the deadline where you are talking about a more complicated medical procedure). I asked about the risks of amnio and she told me there was anywhere between a one in 200 to one in 300 chance of miscarriage. I told her I didn’t want to risk that. Even if the baby did have Down syndrome, I told her, I wouldn’t have an abortion, to which she replied, “I’ve heard that before, and you might change your mind if it’s a reality.”
   
We opted for a level-two ultrasound, which revealed a “borderline” marker: The nuchal fold thickness qualified as a marker, but there were no other markers so we were still in the dark. The presence of a marker increased the odds even more and again the doctor recommended amniocentesis. Scared, we scheduled one, but I cancelled it the next day.
   
Before all this unfolded, I was planning, of course, the perfect pregnancy, the one I didn’t have with my first three babies. I wasn’t going to gain 50 pounds and complain about my aches and pains. I was going to splurge on sexy maternity clothes. This was going to be our last baby and, damn it, I was going to be the happiest, cutest expectant mama I could possibly be. Then all this happened.
   
While we decided to wait it out, that’s not to say my husband and I didn’t do our fair share of stressing out like no expectant couple should ever have to. It was possibly, looking back, the hardest five months of my life. But during this time, as most modern moms do, I Googled the hell out of screening tests, ultrasounds, Down syndrome, amniocentesis—and learned a lot.
   
Among the lowlights of my research was the same uncertainty dumped on tons of other women, all because of a test that is inconclusive and fraught with false positives, when ideally the worst we should be dealing with is edema and hemorrhoids. On one hand, I was relieved to see I wasn’t alone pouring through the forums on Baby Center. On the flip side, I would see women freaking that their test came back one in 800, and I’d think to myself, “That’s nothin’! Try one in 10!” I also discovered that the abortion rate for amnio-confirmed Down syndrome pregnancies is 90 percent. Nine out of 10 pregnancies with confirmed Down syndrome are terminated…because why? As my mom said when she learned of Emmett’s possible fate, “He might have to ride the short bus…so what?”
   
That leads me to share the highlights of my Google search: With today’s early interventions and therapies, people with Down syndrome do quite well, go to school, hold down jobs. But most importantly, they positively affect everyone around them. Show me a family touched with Down syndrome and I’ll show you a family that is better for it.
   
Why is our culture so afraid of people that may be limited in IQ or physical capability, and what is so wrong or “defective” with persons who are not jaded by superficiality, drama and the typical bullshit the rest of us give credence to? Our society has historically tolerated so much worse—racism, sexism, bigotry—yet these statistics reveal a record of discrimination against and fear of those who are innocent, loving, accepting and will positively touch the lives of everyone around them. What’s to fear?
   
Of course it did occur to us the work we could be facing in the future should he have Down syndrome. It’s impossible to know the degree of disability you are facing until birth—or even years after. How would we be able to travel to Ireland someday, to have a life, if we were burdened with a severely differently-abled baby?

In my heart, though, I knew that we were the “retarded” ones, in those moments when we feared being burdened by our child. The true burden is society’s concept of perfection. Who determined what is perfect enough? Must you have a high IQ? We know there are plenty of paste-eaters out there, and they got a shot at life. There are plenty of us with “perfect” chromosomes, and yet not one of us is perfect.

At the time of my AFP test, it was recommended for women aged 35 and over. Now it’s recommended for EVERY pregnant woman regardless of age. This scares me because I think of all the women who will be unnecessarily filled with fear of the unknown.

But you know what? While I certainly had so much to dwell on, complain about and fear—and even worse hemorrhoids than ever before—I had the pregnancy I wanted, no matter what the odds told me I may be in for. I simply couldn’t wait to meet my baby, and was actually more curious about what the next chapter of my life held rather than dreading some diagnosis. I was proud I decided to remain in the dark about our future and this baby—and I went and bought my designer maternity jeans.

A friend recited to me a favorite quote: “Ninety percent of the things we worry about don’t even happen.” I held on to that and still do. Curiously, those odds are one in 10. Hmmm.

The simple fact is, there was one thing I did know: I loved him no matter what. When Emmett was born, all that worry was for nothing, and now I worry about a million other things like all moms do, most of which are not in our control. Who knows? He may still have to ride the short bus, or he may be a rocket scientist. I really don’t care either way. I’m his mom.

PS. During my Google-fest, I found Elaine Linn, executive director of DSIA who became  a supportive  e-friend. I’m also happy to feature a piece from Jen Sanchez, a local mom who has found herself happy in Holland.