It's been over four years since you changed my life completely. And you might not even remember who I am. I was pregnant with my second child, a little boy. I had been referred to you by my obstetrician, because our nuchal translucency screening had come back with 1 in 6 odds for Down syndrome. You had performed an amniocentesis, just two days after my husband had deployed to Afghanistan. I wasn't just scared -- I was alone.
I will always remember the phone call I got with the news. It was late on a Friday afternoon, and you told me that the results of the amniocentesis came back: male, positive for Trisomy 21, or Down syndrome. You asked me if I had any questions, I said no, and the phone call was over. I didn't know what to think. I spent the next couple of weeks crying. But as scared as I was, I wanted my baby.
When the next appointment came around, I didn't know what to expect out of you. I was expecting to be pressured into an abortion. I was expecting to be told a lot of worst-case scenarios, that my baby would never walk or talk or learn. That is what other women have reported, after all. That's the norm. The way women receive a diagnosis for Down syndrome by medical professionals in this country is horrendous, and I didn't expect you to be any different.
But you were.
In many ways, you were a godsend for me. You never once pressured me to do anything that I didn't want to do. You were encouraging and positive. You offered me resources and even told me that you would help me if I needed it. You joked about my baby, talked about his future. You talked about him as if he was a beautiful gift to be thankful for. You talked about him playing soccer one day, about him keeping me busy when he was born because he never stopped moving during ultrasounds. You helped me know what to expect, and helped me come up with a plan for the birth. In so many ways, you were a lifeline. I felt like I had no hope, and you gave me hope.
Even now, all these years later, I still remember you. I always will. And I want to say thank you. Thank you for being compassionate. Thank you for being informed and knowing about the latest research on Down syndrome. Thank you for being a beacon of hope during a time of seemingly unending darkness.
As thankful as I am for you, I am sad to know that you are the exception, not the rule. Many women don't have an experience like mine. Many women are given outdated, inaccurate information. They're told to have an abortion and that their baby will never amount to anything. And it not only breaks my heart, it makes me angry. No parent should have to go through something like that, especially when they're likely already struggling with fear and uncertainty. My hope is that you will not only continue to be a source of compassion and positivity for moms who get a prenatal diagnosis of Down syndrome, it is that you will speak out and be an example to your fellow doctors. It doesn't have to be like this. It shouldn't be like this.
To the other moms out there who received a Down syndrome diagnosis, you don't have to be alone. And you can let your doctor know how they did with your diagnosis, too. By speaking out and giving your physician feedback, you can make a difference, and you can do so anonymously. Just visit the Down Syndrome Diagnosis Network athttp://www.dsdiagnosisnetwork.org/feedback. Make your voice heard. Together, we can change the way women find out their children have Down syndrome. We can make sure that no one has to ever have a negative experience ever again... and that everyone receives a diagnosis with compassion and kindness.
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
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.
Cassy Fiano is a freelance writer and blogger. She is married to a former Marine and Purple Heart recipient, and they live in Jacksonville, Florida with their four children. Their second child, Wyatt, has Down syndrome and received a prenatal diagnosis at 15 weeks of pregnancy.