You didn't technically deliver our daughter's Down syndrome diagnosis, but your words shortly after have become our battle cry for her life.
Our diagnosis story started at our 20 week anatomy scan, where 3 "soft markers" for Down syndrome were noted in our baby's scans. Fast-forward two weeks and lots of blood work later, and we were reeling in a diner booth after the perinatologist called and bluntly confirmed our NIPT results had returned positive for Down syndrome.
I had a pre-scheduled appointment with my OB/GYN's office the next day and it was here that I would finally come face-to-face with a real life doctor to discuss our results. I had never met you before, as I was new to this particular practice, but I truly believe it was divine intervention that put us together in that office, on that day, in that moment. At a time when our lives were filled with so many suffocating "whys"- Why this? Why her? Why us?- the most important "why" came from you...
On the day of our appointment, you entered the room and gently greeted my husband and me. You told us you had read the NIPT results. You said you knew that wasn't the news we expected, but that you would do your best to help answer our questions. Through swollen, tear-filled eyes, I pulled up the "notes" app on my phone where I was collecting every random question that popped into my head. I didn't know where to begin, so I started with questions about our labor and delivery plan...
I asked, "Will we get to have a typical delivery?"
You answered, "Why not?"
I asked, "Will my baby be able to breastfeed?"
You answered, “Again, why not?"
My questions continued, "Will she still be able to room-in? Will she get to go home with us at discharge? Will any of this feel ever feel okay?"
Each time you answered with the same, "Why not?” (and an occasional, “Why the HECK not??”).
I could go on, but the point is this- with every question, you gave us hope. You did not cite outdated statistics or pin us with grim scenarios. You were still a realist, however. You tempered your answers with facts about common complications that could arise and potentially change our expected course. But you also reminded us that this is true of any child and any delivery. You told us we would just have to ride the waves as they came and follow our baby's lead.
In the story of our daughter's life, you left the book open and the pages blank. You did not try to write it for her. You valued her as a person, and as an individual, who would write that story for herself. I know now that many families are not as lucky to have had such a positive experience in the often difficult period that follows a diagnosis. So, thank you for (knowingly or not) being exactly what we needed in that moment.
Our daughter will turn one this week, and what a year it has been! As I reflect on this past year and the bright future that lies ahead for our incredibly strong and determined girl, I can't help but smile as I think of all the amazing things I know she will do in life... because WHY THE HECK NOT?
With utmost thanks and gratitude,
October is Down Syndrome Awareness Month. This letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign. The purpose of this campaign is to raise awareness that there are nationally recognized guidelines in place on how to deliver a Down syndrome diagnosis- with current information and without bias.
You can let your doctor know how they did delivering the diagnosis by participating in DSDN’s Physician Feedback Program. If you are a parent of a young child with Down syndrome, connect with DSDN for information, connections and support.