When you walked into my hospital room that early morning, I had no idea how long your list of credentials was or how many medical organizations you belonged to. I had no idea that you were the chief of the largest genetics clinic in the country. I didn't even know that the largest genetics clinic in the country was in my backyard or truthfully that that was even a thing. All I knew was that you were here to talk to me about my son.
He was born late the night before six weeks early, but healthy. The drugs I was on due to high blood pressure during my c-section left me completely out of it. While I was recovering, the neonatologist on call told my husband she suspected our son had Down syndrome and pointed out Elliot’s various markers to him.
When I finally woke up, my husband told me the news while he choked back tears. Our world changed in an instant.
All I could see for the next few minutes were decades spent as a caregiver. I felt as though everything I had worked for my entire life had been snatched from me. I envisioned a son that couldn't reach all of the dreams I had for him. Even though I loved him already and would give him everything I had, I was grieving for the son I thought I was adding to my family.
Elliot was in the NICU. I hadn't even had the chance to see him yet when you knocked on the door to my hospital room. While a medical professional had already delivered the news to my husband, you were the first doctor I spoke to.
I didn't want to see you. I didn't want to know you. Up until that point, I was living in fantasyland hoping the doctor the night before didn’t know what she was talking about. Having you come speak to me made it real. Seeing you meant my son had Down syndrome.
You introduced yourself. You were kind and professional. But most of all, you were encouraging. You shared that you had been to the NICU to see Elliot before you came to meet with us and that you agreed with the neonatologist’s assessment. You told us that he was such a cute little boy. I remember that clearly because you said it so genuinely. You also said something else that morning that still sticks with me two years later.
You said, "It will be a while before we know the full range of his abilities." That word: abilities.
Just one word had the power to change my entire outlook. Only nine letters gave me the strength to envision a new normal.
Down syndrome had been echoing in my head for hours at that point. All of my thoughts and Google searches kept coming up with all of the disabilities Elliot would likely have. Heart defects. Slow speech. Low muscle tone. Hearing loss. Leukemia. The list goes on as you know.
The negatives kept piling up in my mind until you met with us. Maybe even you didn't know the full impact that simple word would have on my heart, but in that moment I needed that word. Suddenly I knew he would be fine. I was able to start picturing him defying expectations. I knew that whatever lied before us, we would tackle and Elliot would thrive. With that word and a lot of prayer, I was ready for the challenges. I was ready to become his biggest advocate.
The nurses that morning all walked on eggshells around me. I remember they kept trying to discreetly screen me for depression. Then you walked in with an entirely different attitude – one of joy over the birth of this precious new baby. Along with the facts, you delivered encouragement. I can’t thank you enough for how you handled the news with information and truth, but also with congratulations and hope.
Later that day, I Googled you and I found out who you were. I was pleasantly surprised that someone who clearly has a busy, important schedule would come talk to us at a moment’s notice as it seems you did. I was so grateful to know that there were doctors like you out there on the front lines talking to parents.
As I became more immersed in the Down syndrome community, I was saddened to learn that the way you spoke to my husband and I that day is not necessarily the norm. I’ve been heartbroken to hear what other parents have been told by medical professionals including genetic counselors about their children. I pray often that the medical community changes its thinking and picks its words more carefully so expectant and new parents receive the support they need.
But until that day comes, I have to say to you, thank you for being so wonderful. Thank you for being a positive leader in your field. Thank you for loving these children and for encouraging parents as they receive unexpected news. I will never forget you and your words. And by the way, I’m sure you’d like to know, as it turns out Elliot’s abilities continue to amaze us every day.
With a grateful heart,
Let your doctor know how they did delivering the diagnosis, anonymously, 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
Melinda lives in Houston with her husband and two (soon to be three!) children. A former high school journalism teacher, Melinda uses her love for writing and photography to document her family’s story at asfatewoodhaveit.blogspot.com andfacebook.com/apolishedarrow. Some of Melinda’s writings have been featured on themighty.com.