Dear Doctor: "There was No Negativity, No Presumptions about her Future."
Chances are you don’t remember us. Our baby girl was born on a cold February night 19 months ago. We were anxiously awaiting her arrival so that we could complete our move where we would be closer to the city and my husband’s job. We had plans to have our baby and bring him or her immediately to our new home to start our new life as a family of four. As you know, you were the hospital pediatrician. I hadn’t bothered to name a doctor for the baby - we had someone lined up in our new neighborhood and none of our prenatal testing suggested that our birth would be anything but straightforward.
Indeed, Francesca’s birth was as straightforward as they come. Born 1.5 hours after arriving at the hospital, she was out with just three pushes. “It’s a girl!” the doctor announced. The most amazing surprise! “5lbs 12oz,” a nurse called out. Wow, what a peanut! We mused as I impatiently waited to see my little girl. Francesca Catherine was handed to me and I looked into her eyes. My stomach dropped. “Does she...” I started to say, but stopped myself, not wanting anything to ruin my most perfect moment. No doctor or nurses mentioned Down syndrome but I knew. Her beautiful kaleidoscopic eyes were so telling.
Frankie - as we call her - was whisked away “to be cleaned up” after we had spent a little time with her and we were taken to a room. I spent the wee hours of the morning googling and researching and wondering where she had been taken for five long hours. At about 8am, your associate came in and informed us that there was a slight concern about Down syndrome. “She doesn’t seem to have any markers, but the tone is very low. We would like to test to be sure, but it’s probably nothing.” They were words I clung to for the long week following before the diagnosis was, in fact, confirmed.
We saw you once in the hospital and once in your office after were discharged. We only stayed one night in the hospital before we begged to go home - we were blissfully unaware of all of the potential health concerns that can occur in those with Down syndrome. You were kind and careful and didn’t treat her any differently than any other babies. It didn’t strike me so much at the time, but now I have come to appreciate your acceptance and easy-going nature in those early days because it helped me to keep calm.
We spoke on the phone a week later. I called your office to chase the results of the karyotype. The receptionist was quiet as I assumed she was looking up the information, then she came back on the phone and told me someone would call me back. I knew it couldn’t be good news. We spoke briefly. You told me the test was positive for T21. “Is it in all the cells?” I asked, clinging to my last hope - that she might be mosaic. You said it was. “Well, what do we have to do?” I asked. “Nothing differently than you would with any other baby. Love her,” was your reply.
It was perhaps a bit simplistic. Even though we suspected Frankie was perfectly healthy, the weeks that followed were filled with EKGs, echocardiograms, blood draws, scopes and lots of doctors. Maybe if she was your patient you would’ve had more direction for us, but I have come to appreciate the simplicity of what was essentially the delivery of a diagnosis that changed our life. Here is your daughter. Love her like you would any other. There was no negativity, no presumptions about her future, no she can’ts, she won’ts, she will nevers.
I’m sure I don’t have to tell you that I hung up that phone and cried for what seemed like weeks. That “my baby has Down syndrome” was my first thought when I opened my eyes every morning for months. But my baby girl was a beautiful distraction as she amazed us over and over again in the days after our call.
Frankie is now 19 months. She is walking with more and more confidence every day. She has three words and several signs and there is not much that separates her from her peers at this point - our current daily battles include trying to find the toys she has purposely hidden under the couch and keeping her away from the garbage pail, which she has learned to open.
She is loved by her brother, her parents, four grandparents, 11 aunts and uncles, six cousins, four therapists and nearly everyone else who meets her. Her giggle is infectious and those eyes still sparkle like none other that I’ve ever seen.
When and if you have the chance to deliver a diagnosis of Down syndrome to any families in the future, we hope you might consult the Down Syndrome Diagnosis Network's guidelines (www.guideline.gov/summaries/summary/34434) The organization has provided us with so much support for the past year and a half. But most importantly, we hope you'll think of our Frankie. She has taught us so much about patience, living in the moment and loving unconditionally. Our journey is not perfect and I know there will be challenges ahead, but overwhelmingly our days are filled with she can, she will, she did it!
Thank you for the part you played in our good start.
With best wishes,
The Lyner Family
Let your doctor know how they did delivering your child's diagnosis anonymously by participating in DSDN's Physician Feedback Program.
Connect with the DSDN if you have a young child or are expecting a new little one with Down syndrome for information, connections and support at www.dsdiagnosisnetwork.org
New York-based Farah Lyner is mom to Tristan, 7, and the chromosomally enhanced Francesca, 19 months. She blogs about their Down syndrome journey at www.eyeslikesapphires.com