Once upon a time there was a little girl. She was beautiful, not only in the eye of her beholder, but the great wide world. Lavender eyes and a thick cap of dark hair, she was perfect. Yes, her one ear was missing and her jaw affected slightly, but who said real life is molded by cookie cutters? She's perfect and she will thrive and do everything and more than you ever dream and hope for her. She's perfect. That's the story I wish that I heard, but I didn't.
The one I heard went something like this. The words of a physician rained misery down on the vulnerable new parents. "She'll never have her first kiss. She'll never go to prom. She'll never get married." If anything came after that, they would not remember. Their hearts had been broken and the future seemed bleak and terrible. However, it has not been a bleak future for that lovely girl, a dark haired beauty who is a bright student and a light for her many friends and teammates; she may look a bit different but sunshine has marked her days. The dark cloud that had been painted for the young couple, it never came to fruition, not rooted in medicine just ignorance. At one time I thought that story an oddity, an outlier of the most extreme, but sadly I know now that the theme of ignorance is quite common as I have heard it told and experienced it personally, in various renditions, again and again and again.
Language is a powerful tool and for a family, there is no one whose words are more powerful than one in the medical field, doctor, nurse or specialist. Particularly the words of the one that encounters a sensitive mother, whether fresh to a diagnosis or awaiting the surgery of her child. Perhaps she is sensitive due to a sudden serious short-term illness, maybe a life-long one, maybe her newborn is not quite "perfect." She wonders if you see him only as a specimen.
"He doesn't look dysmorphic," I was told by the geneticist. I felt relief but then worry. What did that even mean? It didn't sound good, but we seemed to be safe. Dysmorphic. Nearly three years later and I find myself wondering if he maybe does look dysmorphic. I hate that word, yet it was dropped into my mind that day by a quite highly thought of geneticist and the scar on my heart will not be erased. I was so naive just a few short years ago and this began my journey with the power of words and their pummeling strength has shocked me again and again.
"So, is he retarded?" No, I answered, meekly and too shocked to elaborate. It was just five in the morning and I was making critical decisions about a surgery to take place in the next thirty minutes. The casualness of the anesthesiologist stunned me into silence as I awaited for the surgery to begin. Perhaps he asked the question to establish rapport with me as he went on to say he had a "Down's kid." My silence perhaps discouraged him and he moved on, oblivious to the mother he had inadvertently destroyed.
Isn't that how it always happens? I doubt that trained medical professionals are often sadists, viciously stomping on the hearts of families and conjuring up evil hurtful statements. No, the stories of hurtful words were likely not planned attacks but that is not a viable excuse, at least not in my house and for the four children we are raising. We teach our children to think of what you plan to say and how those words may make someone else feel. I think we are quick to exonerate the most educated professionals for "medical reasons," but I disagree.
Recently, I listened to a friend tell me how she felt when she heard the words, "I see signs of Trisomy 21." She had given birth just minutes before to a perfect child and admittedly had no idea what those words even meant. She knew only that they were said loudly and spoken from across the room and for her, the silence of the others was the kicker of fear. She lay in the bed dumbfounded and then the accusing statement followed by the nurse's accusing words, "You didn't get genetic testing?!" That incredulous voice inadvertently mocked a new mother's joy that, in an instant, had turned into darkness, confused with a scary scientific name as the weight of joy was overpowered by words that were little more than silly chatter. Yes, it seems that the destruction of families is an ongoing trend. What can we do?
I shall speak up for the families, theirs and mine and ours. I appeal to the medical schools that are not modeling appropriate ways to communicate with families. How to fix this I am unsure, but I feel strongly that experienced physicians should not be solely responsible for teaching the best practice to communicate with families. Practicing actual medicine and connecting kindly and appropriately with parents and children are not inherently linked. We must ensure that the Hippocratic Oath is followed on the whole spectrum of care. First do no harm would be a good place to begin if we want to build bridges with special needs families, not blow them to smithereens. After all, the future has a way of revealing itself, hard paths are joyful and it would be quite truthful to say, "Your life will never be the same and for the better."