Our Appointment with the Genetic Counselor, or The Dark Side of Baby-Making

October 1, 2014

A few weeks ago, Cheri and I had a scare with the baby.chromosomes2

Of course, you probably know that pregnancy is already kind of scary. And everyone worries about their child’s health. That’s nothing new.

So when Cheri had a routine appointment with the genetic counselor, we were not overly concerned.

It was only when the counselor started digging deep into the family history that we got worried. Years ago, our family tested positive as carriers of a Fragile X pre-mutation. Fragile X is the leading cause of inherited mental retardation. No one in the family is symptomatic, but the family carries the gene. We were told at the time that it posed little to no threat.

The counselor disagreed.

She basically told my wife that with the level of intervention we received to get pregnant, we could have (read: should have) “weeded out” any abnormal embryos.

It’s a good thing I was not in the room, because if I had been, that counselor probably would have left with a red hand-shaped mark on her face.

I thought “This is your ‘counsel?’ To tell us what we obviously chose not to do?”

The next couple of weeks were pretty torturous as we contemplated what our future might hold. And we came face to face with a few dark realities of the business of baby-making today.

The Good Old Days When We Didn’t Know Anything

You know, it’s true. Ignorance really is bliss.

A hundred years ago, parents had to be prepared to bury at least half of their children. But they did not know a fraction of all the things that can go wrong with a pregnancy.

We live in an amazing time, a time when we know so much about what it takes to make a human life. The problem is we know so much about what it takes to make a human life. Peril lurks at every corner. A miscopied gene sequence out of millions could make a huge difference.

We live in a time when we can do test after test to tell us exactly what might be wrong with our unborn children (though they cannot be absolutely sure with all but the most invasive tests.) They can tell you how much you should panic, but we cannot do anything about all the things that might be wrong.

We cannot do anything about what might be wrong, except…

Sorry For Your “Loss”

The statistics show that the vast majority of unborn children who test positive for Down’s Syndrome are terminated. That is our solution when we are faced with a terrifying possibility. No one tries to have a baby, hoping he will be abnormal.

As I delved into the dark corners of the internet, into clinical reports and message boards for people dealing with the threat of Fragile X, I saw what happens when people confront a terrifying threat.

Post after post, message after message, people who have long been trying to have children, said something like this:

“We have been trying for years to start our family, and are now pregnant for the third time. We are nervously waiting for the tests to come back. We have already lost two fetuses to Fragile X.”

And then the cacophony of soft-speaking back-patters chimes in, “I’m so sorry for your loss.”

But you know that Fragile X does not kill fetuses. Down’s Syndrome does not kill fetuses. Those fetuses were not lost. They were not misplaced. The only thing that our modern system has done is create a situation in which parents are tempted to do something, sometimes for a reason that might not even exist.

Most of the time, this happens in secret, but a couple of months ago, a couple of would-be adoptive parents got on 60 Minutes, accused of “abandoning” their child and his surrogate when they learned that the child had Down’s Syndrome. They said, with a straight face that “If if would have been safe for the embryo to have been terminated, we would have terminated it.”

Why Are We Having Children Anyway?

I don’t want to make a bunch of attacks who make ironic statements like that. The problem is that the prospect of having a disabled child is terrifying. And that terror is what is driving so much of what is happening today.

Cheri and made phone calls and contacted researchers and it turns out that thanks to additional factors in our genetics, our risk of abnormality is very low. There are no guarantees, but we are as reassured as we are going to be. But during that week, we felt that fear, that consuming, tearful, gut-wrenching fear that something would be wrong, and it would be catastrophic.. It called into question every pure motivation we thought we had for conceiving a child.

Are we having children so that we can pour into another human being, bless a child with unconditional love, praise and cheer for a child, no matter what his accomplishments or shortcomings are? Are we having children so that we might deny our own desires, our own comfort, even our own ambitions for the needs of another?

Or are we having children, because we need that child to reflect our hopes and dreams, to fulfill our lives in some way, to be something? We talk about a fetus’s “quality of life,” but I will admit, Cheri and I were just as worried about the quality of our lives. We ask “what kind of a life can a disabled child have?” but I wonder if we are really asking, “What kind of life can have with a disabled child?”

It’s a brave new world, and it is exposing the same age old human nature.

What do you think? Is all the testing worth it, or should parents save themselves some heartache?

2 responses to Our Appointment with the Genetic Counselor, or The Dark Side of Baby-Making

  1. Thank you for your honesty, Matt. I have two (now teenage) daughters, so my experience is ancient history as far as medical and technological development goes. I had the choice of having the amniocentesis test for both babies, and I declined. My husband and I knew that we wouldn’t “change our minds” based on the results, so why go down that road?

    God creates, God oversees, God gives grace in difficult circumstances. God loves – even we who are “normal” in the world’s eyes are broken, dysfunctional, imperfect. God created and loves us all and I believe it is His choice when He brings His babies home.

  2. After our miscarriage, we had a still birth, and then were blessed to be pregnant again a few months later. It was a very difficult first trimester and during this time we visited a support group for grieving parents who were again pregnant. The interesting thing I found was that I sat side by side with parents who chose to abort their children. Having worked with pro-life groups, it was eye and heart opening and also a bit disconcerting for me at the time. We chose not to do testing on our baby because I didn’t feel that focusing on the fear of “what if” was healthy for me. So, instead, every day, I told my child I loved her, no matter what, and for however long I would mother her. I have learned so very much about the goodness and comfort of God through my losses; He did turn ashes into beauty, and I was blessed to raise 3 children.