I do not remember your name, but I will never forget your first words to me. I had just given birth to our first child, a beautiful baby boy, who had arrived four weeks early. His surprise arrival is actually the only reason why you and your neonatology team were in the delivery room. I had had a healthy pregnancy and a negative Noninvasive Prenatal Test (NIPT), so I think we were all expecting a fairly uneventful birth.
Minutes after Jackson was born and before my husband or I even had a chance to hold him, I remember you turning to my OB and asking her a question. She was still working on me at this time, and I recall you saying something about Trisomy 21. She responded with "They had a negative test." I am not sure if you thought I could not hear you or if you thought the epidural had made me too loopy to understand or if you thought maybe, as a 37-year-old first-time mother, I would not know what Trisomy 21 was, but I assure you- none of the above were true. I quickly jumped into the conversation, adamantly repeating what my doctor had said to you.
This is when you turned to me and said, "I hope I am wrong, but your son is exhibiting several markers for Trisomy 21 or Down syndrome."
I doubt you knew the power you wielded at that moment or how those words will forever be etched into my memory. If you had known, I have to believe you would have chosen to handle this moment differently. In fact, because how a doctor delivers a diagnosis of Down syndrome has such a lasting impact on parents, the American Academy of Pediatrics Journal actually has recommendations for delivering a birth diagnosis to parents.
One of these recommendations states how parents should be told together and should have had time to meet their child. Though four weeks early, our son was not in any immediate distress; you easily had the time to make your observations silently, swaddle him, return him to us, and then privately discuss your suspicions with my OB.
Instead, by sharing your observations in the way you did, you robbed us of something we can never get back. We will never have that moment where we looked at our son with the pure amazement all new parents should have the opportunity to feel. Instead, the first time I held my son swaddled in that pink and blue hospital blanket, I was searching his face for the "markers" you mentioned. Instead of basking in his beauty (because he is beautiful) and feeling my heart fill with the kind of unimaginable love only new parents understand, I felt a cold, dark fear take residence in my heart.
Part of this fear came from my lack of knowledge about Down syndrome, something with which I had had little experience. However, your words also contributed to the despair I felt. By saying you hoped you were wrong, you told me that whatever you said next was something negative, something undesirable. Another recommendation from the American Academy of Pediatrics asks that doctors use positive language and refrain from offering opinions about the diagnosis. Yes, a diagnosis of Down syndrome is life-changing, but your words made my husband and I feel like those changes would all be negative. Your words did not tell us that my baby was still perfect. Your words did not reassure us that our baby deserved to be here.
Thankfully, I had family members and friends who quickly connected me to other mothers on this same journey. Their words of congratulations reminded me that our son was still the baby who had grown inside me for almost nine months, still a baby worthy of celebration. Their words of encouragement motivated me to learn about all the amazing things our son will be capable of doing. His diagnosis and how we initially received it will not define him.
In writing this letter, I hope that your approach to future diagnoses changes so that it allows families to have that moment of unabashed joy when holding their newborn child for the first time. Please, choose your words and timing carefully. You have more power than you realize.
Natalie Palin enjoys staying at home with their two and a half year old who rocks his extra chromosome. She shares aspects of their journey with Down syndrome on the blog Palins' Progress: Adventures in Life and Parenting with a Little Something Extra.
You, too, can let your doctor know how they did delivering the diagnosis by participating in DSDN’s Physician Feedback program. Your submission will be kept anonymous
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.