March / April 2005
Volume 23, Number 2

While most babies with Down syndrome are born to mothers under 35 years of age, there is an increased incidence for women who give birth later in life. Most parents of children with Down syndrome find out after the baby is born, since the tests are typically not done until after about age 35.  While my wife could have passed for someone in her twenties (yes, even presidents need to brown-nose sometimes), at the time she was pregnant with Sarah she was past this magical number.  So, early in her pregnancy, she had an amniocentesis to test for Down syndrome and other conditions.  Unlike screening tests that have relatively high false positive rates, amniocentesis is a diagnostic test and is 98% to 99% accurate.  So we knew months before Sarah was born that she was going to have Down syndrome.

    The first thing we did, since we knew so little about Down syndrome, was to go into “information collection” mode.  We found out about and contacted Down Syndrome Aim High, spoke to parents, healthcare professionals, family and friends.  After several days of gathering information, and a few more to think about and talk it through, we decided to continue down the path we were now on.  For some people the decision may have been quite easy.  For people strongly rooted in the beliefs of their religion, termination might not have even been an option.  For us it was not that simple.  While we were not guided by such absolute convictions, we also did not view that option lightly.

    During the time we considered what to do, we were given much information and much advice.  We were told a variety of things: we were told that we were chosen for this, we were told that the test was wrong, we were told that we could “handle” this, we were told that we did not have to deal with this, and I was told by a close friend “so what…so it’ll take a little longer for her to learn…big deal!”  I think the last one was the most profound and thought provoking of all.  Most importantly my wife’s doctor gave no advice, only information.  He made it clear that it was our decision and that he would unconditionally support whatever we chose.

    One of the things that we could not ignore during our thinking process was our poor track record for producing viable children.  My wife’s pregnancy with Justine (our first daughter, now almost 12 years old) went without a hitch.  She arrived about on time, and pretty much all of the usual proceedings were considered “normal.”  The labor was a little long as I recall.  But after Justine, many problems occurred.  We lost one daughter at birth that we did not even know ahead of time was in trouble.  My wife endured several miscarriages and we wondered if this was our last, best chance to have a baby.  In fact, because we had been through so many problem pregnancies, my wife had the amniocentesis to look not only for Down syndrome but all the other things it could detect, such as neural tube defects, the condition that took our other daughter.  The emotional content surrounding this decision was tremendous. 

    As we thought about what to do, I found myself thinking about what we wanted for our children.  I always had high hopes. I wanted my children – I thought – to be famously successful: a scientist who cures cancer…a lawyer who argues and wins a case in front of the Supreme Court, or maybe sits on the Court one day…a business person who starts a wildly successful new business, a famous musician or actor, or President of the United States.  All of these things were likely now out of reach.  But did that really matter?  People give birth every day to children who do none of these things.  Was that really what we wanted, what I wanted, for my children?  Must she be positioned to do something “great” by some definition?  Then I realized what I wanted for my child, for all my children – I simply wanted them to be happy.  And I knew that Debbie and I could bring happiness to our child no matter what her physical or mental challenges.  We knew that our new child would have good times and bad like any child, but we also knew that we had the dedication as parents to make her life as happy as it could possibly be.  And we could do that whether she had Down syndrome or not. 

    Years after we had Sarah, I was surprised to hear a study cited that found somewhere around 85-90% of parents who were given a pre-natal diagnosis of Down syndrome elected to terminate.  I was very surprised to learn that we were in such a minority.  Please know that I am not trying to express a position of “pro-choice,” “pro-Down syndrome” or “pro” anything other than maybe “pro-Sarah.”  Like so many parents I know of children with special needs, whether it be Down syndrome or something else, along with all the challenges I cannot imagine my life without both my daughters just the way they are.