It was four years ago on this day that we briefly meet, and I mean briefly. I had just given birth to our second child, a little boy we named Carl, and was waiting for him to return from the nursery. Then you walked in, quickly introduced yourself and then gave us the most shocking news my husband and I ever received. After just leaving the delivery room minutes before you came in, we had no idea there were any concerns with our newborn. Your words and tone were like an atomic bomb being dropped on us.
"Your son looks healthy so far, but....."
"BUT WHAT?" My husband and I both cried out at once. "We think, your son has Down syndrome," you replied. I can still remember the feeling of my entire body going stiff and numb into a complete state of shock. I remember my husband said, "How can that be? We were just with him." You then started to list off all the characteristics. I remember you even said you asked the nursery staff if we were Asian because of the shape of our sons eyes.
While you did give us some up-to-date information on Down syndrome and assured me I did nothing wrong during my pregnancy, the way you delivered our child's diagnosis could have been done a lot better. I don't remember most of what you said, the whole thing was so traumatic, I've blacked out most of it in my mind. I do remember very clearly, that you said, "I'm sorry" over and over again throughout our brief conversation. I remember your body language made it very clear you were extremely uncomfortable and I could tell you wanted to get out of our room as quickly as possible.
I remember what you didn't say. You never once said,"congratulations." Even though my husband and I were both visibly very upset, we still had just welcomed our little boy into the world, and when someone has a baby, you say congratulations. Instead, you made the birth of our child feel like a tragedy.
As for our little boy, he's turning four today. He is the light of our lives, he is our everything. My husband and look back at this day four years ago and we feel some guilt that we were so upset, but the tone you set did not help. Our little man is not anyone you should feel sorry for. He has an amazing gift and charm that brings joy to us his family, friends and complete strangers he meets. Our world is better for having him in it. Yes, there are unique challenges, but all my three of my kids present their own challenges.
I ask that you and your colleagues remember that words do matter. While no one wants to hear that their child may have a disability, it is still their child and those parents love them. While yes, we need to hear information about the diagnosis, please keep your pity to yourself. Please, even though parents will understandably be very upset, congratulate them on their new beautiful child.
( Carl's Mom)
Do you have a child with Down syndrome? Let your doctor know how they did delivering the diagnosis, by participating in DSDN’s Physician Feedback program.
Connect with the Down Syndrome Diagnosis Network if you have a young child or are expecting a new little one with Down syndrome for information, connections and support. www.dsdiagnosisnetwork.org