Genetic testing and the Power and Consequence of Making a Pro-Life Choice

Once upon a time, three young lifetimes ago, my husband Mike and I were consumed with the awesome task of readying our home, as well as ourselves, for the birth of our children.  Like any set of parents, we were dreaming of the lives of each of these roses that we would bring into the world.  And like many other expectant parents, we had the honor of being cared for by medical professionals that were looking out for our best interests as well as our child's.  I will never forget the look on Mike's face when he looked at the ultrasound monitor with me, saw our firstborn's image there, and realized that he was going to be a father.   

Like many expectant mothers, I had many tests to gauge the health of our newborns and those newborns, once delivered, were subjected to thorough screenings to determine their health.  Mike and I were both aware of the risks; if we didn't we only had to look at a couple who were good friends who lost their firstborn at four days of age from a heart defect, and delivered a stillborn second infant to realize that childbirth had its risks and not every child is born healthy.  Our faith, however, told us that children are a precious gift from God the father and were to be accepted as such.  Both of us were glad when testing on our three newborns showed that they were each in perfect health, and we came home to begin our lives as a young, growing, healthy family.  

Our lives, and the lives of our children were forever changed when, after many struggles with our second child, she was diagnosed with high-functioning autism.  Like all parents, we were devastated to realize that the life that we had envisioned for our youngest daughter would, more than likely, not come to pass as we tried to negotiate what most parents know as "the teenage years".  We had no idea how to parent what we until this moment believed to be our overly stubborn, strong-willed child.  Yet our faith held, for I remember going to Mass about a week after the diagnosis of autism, which also just happened to be the Feast of the Assumption and praying to Our Blessed Mother:

Dearest Mother Mary, if anyone knows how to raise a special child, it is you.  Please guide me, for I have no idea what to do with this child.

Meanwhile, back at the farm, our youngest child, who seemed so strong and healthy, developed problems shortly after birth.  Breathing problems, later diagnosed as asthma, almost took him from us three times before his fifth birthday.  When he was not fighting to breathe, he has hearing problems which required surgery, followed by speech difficulties that required professional help.  Then at age four I got a call asking me why my son's fine motor skills would not allow him to correctly use either crayons or pencils, or why his spatial visualization skills did not allow him to adequately draw or cut a circle or a triangle.  This struggle continues to this day.

Mike and I had our hands full, as you can see.  We worked together to meet the needs of all three of our children. We kept in mind that a plant devoid of water and sunshine cannot survive, as we met the needs of our firstborn, even as we were continuously meeting the challenges handed to us by our two youngest.  I cannot begin to count the number of times that I arrived home during the summer only to watch my second child bouncing of the walls, because no matter how well we planned, she could not wrap her mind around the changes that were the inevitable result of not attending school for three months.

I worked for a major health provider who at the time was just beginning to work with genetic testing.  I had sincere doubts about the morality of such testing and while I felt comfortable discussing my concerns with my co-workers, I was amazed at how many did not share my concerns, and truly believed that, in these cases, parental choice should prevail.  

I have thought long and hard about this issue and the possibility of writing about it from a personal perspective.  What ultimately pushed my decision to do so came after reading an article in The Atlantic entitled The Last Children of Down Syndrome by Sarah Zhang.  I was absolutely amazed when I read the end of the third paragraph 

Denmark became one of the first countries in the world to offer prenatal Down Syndrome screening to every pregnant woman, regardless of age or other risk factors.  Nearly all expecting mothers choose to take the test; of those who get a Down Syndrome diagnosis, more than 95 percent choose to abort (p.44)

The article goes on to state that this argument has been going on in America, which gave me pause as well.  It gives me pause because of my real concern, whether fiction or not, is that the choice not to abort such children, especially in a society in which people with disabilities are not respected, will be followed by the mandate that parents who choose this option will assume the responsibilities, financial as well as personal. of raising their children alone.  Because for every couple such as Mike and I who had the benefit of raising our young people with the help of medical, educational, and state officials, many other parents have not only not had that opportunity, they have had to use legal means to secure these rights. 

In my experience, parenting special needs children, even with a broad network of help that includes family and caring godparents and others within the church (I don't know what I would have done without the help of our parish nurse to bounce ideas off) is one of the hardest tasks adults do.  It takes a great deal of time, faith and prayers to Our Lady like the one mentioned earlier to complete this special task.  It also takes a great deal of forward thinking to a world in which all our children assume their rightful place in our society.  The story of our family's journey has yet to be completed.  As of this writing, however, each one of my three has found their place and is very successful at what they do.  The oldest is an award-winning human resource manager, the second child has the respect of others in her professional and personal life as she completes her assignments, and the youngest has followed his father in journalism, using extraordinary talents to describe the news of the day to his readers.  Let us pray that all our children will find special advocates to capture and propel them to be all God created them to be.