I wish I could address you more correctly, but unfortunately I don’t know your name. I don’t think you gave it to me. I also don’t know what type of doctor you were, because I don’t think you told me. To be honest, I’m not even sure you’re a doctor, because you didn’t tell me. I’m just assuming based on the fact that you were the one checking out my newborn baby while I lay strapped down to an operating table with my abdomen cut wide open.
Maybe you did tell me this and I just don’t remember. That’s possible. It’s an awfully vulnerable feeling being strapped to a table with your insides cut open. And I had just gone through the worst moments of my life—thinking my baby was going to die before I could bring him into the world. So I’ll admit that I wasn’t at my best and perhaps wasn’t listening as well as I should have been.
But here’s what I heard from you, as I lay on that table—alone, I might add. My husband was across the room, talking to someone else in scrubs. I was alone when you came up and brusquely announced, “I need to tell you something because you’re scheduled to have your tubes tied. Your baby has some issues of tone that concern me…some markers for Down syndrome. Are you sure you want to have your tubes tied?”
My eyes filled with tears when I said as firmly as I could, “Can you please repeat that with my husband here?” I couldn’t believe you were telling me that while I was alone—and I couldn’t believe you sounded so negative. Your tone said to me: “This baby isn’t right. Are you sure you don’t want to leave your tubes intact and try again?” I was angry and I was hurt. I hadn’t even seen my baby yet! He was across the room on a warming table, and all I could see was the top of his bald head. I hadn’t even seen him, and you were telling me what was wrong about him.
Doctor—or whoever you were—can I be honest? That was the most pivotal moment of my entire life, and I so very much wish you would’ve handled it differently. I wish you would’ve ensured that my husband was holding my strapped-down hand when you told us. I wish you would’ve said, before anything, “Congratulations—your son is beautiful!” Because he was—and is—beautiful. And amazing. And perfect. I wish I would’ve felt like you could see that then, instead of feeling like you saw him as some sort of disappointment or problem.
I get it, though—this is a hard thing to tell parents. I’m sure you do the best you can in an uncomfortable situation. So can I share something with you? In the four years since my son was born, I’ve learned a lot about Down syndrome. And one thing I’ve learned is that there are actually published guidelines for how to deliver a Down syndrome diagnosis! So many families have had poor diagnosis experiences that the U.S. Department of Health and Human Services has put up guidelines telling you how to share diagnosis news with parents.
And you know what else I’ve learned? There are organizations devoted to helping ensure an unbiased diagnosis experience for new families, such as the Down Syndrome Diagnosis Network.
You’ll undoubtedly be faced with delivering more diagnoses of Down syndrome in your career. Can I ask a favor of you? Will you read the guidelines and apply them the next time you’re delivering a diagnosis? And will you direct the parents to the appropriate support network, whether it’s Down Syndrome Diagnosis Network, a local Down syndrome organization, or better yet, both? I promise you, this can only make the diagnosis experience more positive for the families you’re seeing. This can turn the pivotal moment in their lives into something positive.
Proud mom of a beautiful son with Down syndrome
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
Let your doctor know how they did delivering the diagnosis, anonymously, by participating in DSDN’s Physician Feedback Program.
Cathleen Small is a writer and editor, as well as the medical outreach coordinator for her local Down syndrome organization. Her son, Sam, came into this world rockin’ an extra chromosome in February 2012, joining his big brother and completing the Small family. She is also sits on the board of the Down Syndrome Diagnosis Network. Cathleen blogs at foursmalls.com.