Week 15: To test or not to test. Is it a question?

Last night I looked in the mirror and thought, “whoa! Where did that belly come from!?”

Looks like Baby Flo-Bix is starting to flesh out a bit. We’re up to a fetus the size of an apple floating around in there. I still cannot get over the strangeness of carrying around a four inch creature wherever I go. Most of the time I’m not even thinking about it and even when I do it still seems impossible. All the evidence of these things unseen has been external (ultrasound, Doppler). I think when this babe actually starts kicking around and I come to realize there’s actually something in there, I will be blown away.

One of the conversation any pregnant woman runs into time and again with her physician/midwife is around genetic testing. At our very first, 8-week appointment the doc sat us down and laid out at all the options we would have for testing over the next few months. As first time parents we listened intently and tried to think about what was best for our family. My thinking was, if we do have a fragile baby then maybe that means I will have to carry it differently or go on bed rest. Maybe she’s asking us this because the baby will need immediate surgery or I’ll need need to make dietary changes.

If you’ve been here before I’m sure you are shaking your head at our naivety. When I asked the doctor those questions she looked at me a bit in awe. “Um, no, well you wouldn’t do anything different.” “Then why would we want to get tested?” “You would, hmm, uh, need to decide if you want to….continue the pregnancy.”

Whoa. This woman who brings babies into the world for a living just asked if we would want to terminate my pregnancy because our child would be born with a sickness or disability. Once we assured her that we had no intention of ending the pregnancy regardless of outcome she told us genetic testing wasn’t something we needed to pursue. This conversation has been repeated at every other prenatal appointment (we switched to a midwife in SW WA) and hospital sponsored class we have been to.

What’s incredible is the moral neutrality presented in the option. When the care provider frames it as “information that you will need to decide how to act upon,” there is no expectation that you could make a wrong decision. Whether something as simple as a physical deformity like cleft palate or a life-threatening genetic disorder like trisomy 13, you can do what you want. I continue to be baffled by the idea that people inculturated to expect perfection and independence as their inalienable right would be morally qualified to make a decision about a child who will put these rights into question with every moment of her life.

One of the suggestions for early screening and diagnosis, an argument put out by Commonweal after the introduction of a 1st trimester DS screen three years ago, is that these tests help parents change their expectations about their birth and prepare them early for the new challenges of caring for an infant with a disability. I wonder, shouldn’t that always be our expectation? Should we ever go into a pregnancy “hoping for the best” as if “the best” meant the type of baby the world conditioned us to believe was our right?

To be fair, I would be truly devastated by a condition which caused suffering for our child, particularly something like trisomy 18 or cystic fibrosis. But our reaction to a Down Syndrome baby would be completely different. These friends we have with DS are wonderfully flawed and gifted individuals, just like any person. But this gets back to the central question: are we expecting in the way we should be expecting?

It will take a lot of grace and prayer for us to be ready to welcome a child with a fatal disorder like trisomy 18 and I pray every day that we won’t have to say goodbye to our baby within hours or days of its birth. At the same time, I don’t find myself asking God to protect us against a child with spina bifida, MS or Downs. It just feels morally wrong for people who were nurtured and discipled in L’Arche to pray in that way.

In my less faithful moments I am scared out of my mind about the hospital costs associated with a fragile child. I grieve to imagine the deep prejudice our child will face in a world that would have aborted him. But I also believe there is more grace in us than I know and that we have been prepared by L’Arche, our church and our family to say “yes” to whatever gift we are given.

So, should Christians be screening in pregnancy?