Dear Doctor: You Were Right

In the middle of our pregnancy with George, we learned that our baby #6 likely had some health issues.  There were markers that appeared in one of the routine ultrasounds, and our regular doctor immediately sent us to the higher risk obstetric specialists.  We met with several doctors, nurses, and genetic counselors.  The joy and excitement and anticipation that you usually feel as you prepare to meet your new baby was suddenly replaced with worry, fear, and the unknown.  Hugh and I decided against any prenatal testing (none of which would change the course of the pregnancy, unless of course, we decided to terminate).  The mood from our health care providers after we said we were not considering abortion was one of disdain and pity.  We saw these doctors and nurses frequently during the remaining weeks of the pregnancy, as they were monitoring the baby’s well-being.  Nearly every visit became distressing and agonizing.  On one occasion, the obstetrician I was scheduled to see that day (who was well-known and quite accomplished in his field) responded to me when I asked cheerfully how everything looked on the ultrasound that day.  He spoke very harshly, “I hope you’re the praying type, because your life as you know it is going to change dramatically.”  I was so stunned, and I couldn’t even respond.  He did not mean his comment to be encouraging or uplifting.

George was delivered early because the doctors were worried he was no longer thriving in the womb.  He spent weeks in the NICU as his lungs and liver matured, and his little body could fully develop and gain strength.  We received his definitive diagnosis of Down syndrome about a week after he was born.  It was given to us very plainly and matter-of-factly, we were given a couple sheets of paper of websites we could check out, and then Hugh and I were left alone with George in his incubator.  I wish this experience could have been different.  I wish I could have known then what I know now.  It was hard news to receive, and Hugh and I grieved for all the things that our new baby would never be.  A few months later, at a visit with one of the specialists who we were following up with, the doctor gave me a two page (front and back) list of all the conditions and health diagnoses that a child or adult with Down syndrome might develop.  I was utterly overwhelmed, my mind reeling from the thoughts of these horrible future medical crises. This list cemented my mindset that we were sentenced to a life of hardship and struggles with this new baby.  Yes, our life as we knew it was officially over.

The Nothing Down organization developed a film called Dear Doctor.  In it they share the stories of families who received their child’s diagnosis of Down syndrome in heartbreaking ways.  The hope of Nothing Down is to bring about a change so that these new parents are delivered news like this with compassion, hope, and helpful resources.

“You told my family all the things my daughter wouldn’t be able to do.”

“It was one of the worst days of my life.”

“You offered me termination twice and only told me the negatives.”

“You treated my son’s birth like it was something to mourn.”

The future of any child, with Down syndrome or not, cannot be predicted.  Of course parents need to be informed of potential health concerns, as many individuals with Down syndrome do have certain medical needs.  Education and resources are helpful.  Derision and disparagement are not.  And the potential of any individual is not written in stone based simply on a birth condition.

As you all know, we’ve come a long way in the 9 years since George was born.  We have welcomed two more children to our family who share George’s condition.  And it’s not always easy raising these kids.  They do have unique special needs, which require extra time, effort, resources, and patience on our family’s part.  And looking back now, I realize our lives did change dramatically,  in ways I never could have predicted.  Beautiful, joyful, and gratifying ways.  I am thankful for the path that God envisioned for us, even though I couldn’t see it at the time.

Many parents all over the world choose to terminate when they receive a diagnosis of Down syndrome with their unborn baby.  In some countries, the termination rate is nearly 100%.  And what does the future look like with the advent of genetic engineering?  Of course, helping to reduce the likelihood of babies suffering from serious medical conditions would be desirable.  But what about parents being able to choose a baby’s propensity toward athleticism or intelligence or artistic ability or even eye color and gender?  Are we moving towards a future where people with Down syndrome simply no longer exist?

I hope not.  I want people to see the beauty and potential of individuals with Down syndrome.  I hope that parents wish for their new baby, whether they may have Down syndrome or not, to grow up with qualities like kindness, acceptance, compassion, and joy, not just exceptional intelligence and athletic abilities.  George, Elsa, and Oscar are not simply a diagnosis, and they are not a defect or a burden on society.  They are children of God, with hopes and dreams and very big hearts.

Years ago, pregnant with my son, the doctors warned me that my world was about to change.  Looking back, and smiling to myself, I have to agree.