It has been over four years since we heard the words “your daughter is showing signs that she could have Down syndrome”. Since that time, I’ve heard too many terrible diagnosis stories. I want to take this moment to say thank you for doing it the right way.
Thank you for waiting until my husband and I were together before discussing the diagnosis. I know my husband asked you on multiple occasions whether our daughter had Down syndrome while I was still in the operating room. You politely avoided his questions. You allowed me the chance to hold our daughter before sharing your suspicions.
When my husband asked for a third time while I was holding her, you gently told us that our daughter WAS showing some signs of Down syndrome even though you weren’t supposed to be the one to deliver the news. Thank you for not expressing an opinion about Down syndrome. You didn’t start by saying “I’m sorry”. You didn’t show pity or sadness. Your strength and the unbiased way you delivered the news enabled us to be strong during a time of much inner turmoil.
This meant that our family, who were in the waiting room, met our little girl and celebrated her birth without knowing our fears and our emotions. Our older children held their little sister that day and had no sense of sadness from their mom and dad.
Thank you for providing me with a folder of resources so we could get connected to our local Down syndrome association. You did not overwhelm us with information or facts on Down syndrome. You simply provided the information and it was waiting for us when we were ready to look it over. I’m so grateful for our diagnosis experience. You followed every published guideline in delivering the news.
I’m confident that you were part of the reason we were able to quickly accept the diagnosis. Our little girl is loved and fills our hearts with joy each day. Thank you for your part in our story.
Sincerely, Heather Bradley, Izzy’s Mom, DSDN President
Unfortunately, too many families are not having an experience like ours. Physicians are not delivering the news in an unbiased way with information and access to connections and support. A 2013 study found that for every parent who had a positive #downsyndrome diagnosis experience there were 2.5 parents who had a negative one. We can do better.
At Down Syndrome Diagnosis Network, we seek to change this. It is why I reached out to Jen Jacob over three years ago with a dream to start an organization devoted to new and expectant parents and a vision to change the diagnosis experience. You can be part of helping us reach this vision.
PLEASE share your story with your physician. We hear of these heartbreaking diagnosis stories all the time and yet so many families are not letting their physicians know how their beginning has affected their journey with their child. Be part of the change. Participate in our feedback program this month and ensure critical resources are sent to your physician. Learn more on our website!
When Bad News Isn’t Necessarily Bad: Recognizing Provider Bias When Sharing Unexpected News
June 25, 2018
Dear Doctor, "You Told me Why Our Daughter was Better Off Dead."
September 30, 2016
AAP Guidelines - Care of individuals with Down syndrome