Sunday, December 21, 2008

Pre-Natal Testing

I just finished reading "New Era, New Worry" (Carmichael, Mary. Newsweek, December 15, 2008). The article explains the positions of the Allards, who have a son with Down's syndrome. They support more Down's Syndrome babies being born. 

Prenatal testing has become a disability rights issue, because as Newsweek put it, non-invasive genetic testing could "result in more diagnoses, more abortions, a dwindling Down population and a drop in support for families who carry to term. 

The Allards have had a good experience raising a child with a disability, and they want more people to know that it is possible to raise a happy, healthy child with a disability and maintain a strong marriage and family. The concern is that people with Down's syndrome will have a shrinking community and less support. 

That would be like having a child with a rare disability. 

Our daughter has a rare genetic mutation that affects about one in 10,000 live female births. It is nearly universally fatal in males. Still, we do enjoy a wider community and network than friends of ours who know of exactly 17 children in the world with their son's disability. 

When we learned that our daughter had a disability, after watching her develop normally for 18 months, her baby sister was three months old, not yet weaned, and I was just allowed off bed rest after complications from a C-Section. 

All hell (no, really not heck, it was living through Hell) broke loose. Our first child went from a happy contented baby to a screaming, sickly child with degestive problems, self-abusive  behaviors, and screaming, screaming, screaming, sometimes 10 hours a day. 

"Babies just don't cry ten hours a day, I know it must feel like it sometimes, but that just is not possible," said my family doctor, whom I still love to this day. She simply could not conceive of what we were living through. No one did for two years, until I found out about her syndrome online. 

Ten hours not possible? I was the one who walked her around the block from mid-night to 5:34 AM (sunrise) in the sling so that my partner and our newborn could get some rest. He took a sick day and did the same thing, pacing the living room floor with her in the colic hold, putting her down to scream while he fed the baby, pacing pacing pacing so I could sleep. 

We decided not to have any more children. 

Then we learned that she had a genetic mutation that can be screened prenatally. After long midnight talks and much soul searching, we decided to try again, with the understanding that we would terminate a pregnancy if the developing fetus had any genetic diseases that we could screen for. 

We are pretty lucky, we have a strong family, we still love each other, we both have good jobs and health insurance, three great kids, and a wide community of friends that we have made as parents of a special needs child. But it is not the life I choose. We make it work, and we embrace our child, and we fight for her. But I would never wish this life on anyone, least of all another child like her. 

Every family, every mother, every child, every disability, is different. Even disabilities that are the same are different individually. I know a child with Down's with a (rare) complication-- a spinal malformation that left him a quadrapalegic on a ventilator. And I know children with my child's disability who, unlike her, never walked, never ate, have feeding tubes and intractable seizures. 

We have been relatively lucky, at least as far as bad luck goes. But that is the thing about genetics. You NEVER know. It might be the good kind of down's syndrome, or it might be pretty severe. Yes, we still know a lot about supporting people with Down's and by and large have changed the natural history of the syndrome dramatically for the better. 

But being a parent of a special needs child is no picnic. In fact there are fewer picnics, merry-go-rounds, and play dates for many of us. And a lot more medical appointments. 

This has to be an individual decision. I support everyone who has a child with a disability, whether they chose that or not. I know how hard it is. 

And I support women who choose to terminate a pregnancy when they learn of a genetic mutation that is disabling. Only they can know they factors that impact their decision. And they can only make the decision with complete information-- unbiased, complete information. That includes the full prognosis for better and worse.

For me it was painful, but simple. I would not subject another child to this, not even to create a community of support for mine. 

But Down's is not like her syndrome. And I hope that the Sarah Palin's of the world will rise up and join the rest of us who have been struggling to fund and expand IDEA for years. For her son, and for my daughter, and the rest of the huge community of families that love a child with a disability.