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What She Needed to Hear After Her Child Was Diagnosed With Down Syndrome

During her pregnancy, my friend Courtney was told her daughter Emersyn would be born with Down syndrome after the results of her quad screen came back positive for Trisomy 21.

This is a statement every parent of a child with Down syndrome has received at some point, whether it’s a prenatal or birth diagnosis. The manner in which this simple yet significant statement is said will be forever remembered and makes up the parent’s diagnosis story.

Most parents can easily recall the emotions they felt when they were handed this news. They can also recall in great detail everything that happened in that moment and the moments following. While those with Down syndrome continue to amaze us and break down barriers, some medical professionals don’t deliver this message with much sensitivity, assurance or hope.

After Courtney received the news from her OB’s office, she was then referred to a specialist. They explained the specialist would go over her options and that her pregnancy was now labeled high risk. Courtney was encouraged to consider terminating her pregnancy and continued to fluster her doctors when she explained she wouldn’t consider terminating.

The following is a letter she wrote to her prenatal specialist comparing the unsupportive experience she had with the positive experience I had. She hopes in the future to write a letter to her OB and their office as well. Her hope in sharing this letter is that perhaps it would help even just one family see the potential and the hope that is their baby instead of just the limitations and grim future that can be portrayed.

Dear Doctor,

A friend recently told me of when her prenatal specialist would see her child during her sonograms, he would comment, “He’s perfect.” Once her son was born with Down syndrome, she visited that same doctor. He looked at her little boy and said, “I told you. He’s perfect.”

Her story tore me apart. While I was so grateful for my friend’s experience, it filled me with such sorrow because of what I should have had. I wish you would have been that doctor.

I came to you during the most difficult time in my life. I was terrified, anxious and in complete despair. I didn’t know the truth yet about my baby, and that’s what I desperately needed from you. But instead of support and encouragement, you suggested we terminate our child. I told you her name, and you asked us again if we understood how low our quality of life would be with a child with Down syndrome. You suggested we reconsider our decision to continue the pregnancy.

From that first visit, we dreaded our appointments. The most difficult time in my life was made nearly unbearable because you never told me the truth.

My child was perfect.

I’m not angry. I’m not bitter. I’m really just sad. I’m sad the tiny beating hearts you see every day don’t fill you with a perpetual awe. I’m sad the intricate details and the miracle of those sweet little fingers and toes, lungs and eyes and ears don’t always give you pause. I’m sad you were so very wrong to say a baby with Down syndrome would decrease our quality of life. And I’m heartbroken you might have said that to a mommy even today. But I’m mostly sad you’ll never have the privilege of knowing my daughter, Emersyn.

Because, you see, Emersyn has not only added to our quality of life, she’s touched the hearts of thousands. She’s given us a purpose and a joy that is impossible to express. She’s given us bigger smiles, more laughter and sweeter kisses than we’ve ever known. She’s opened our eyes to true beauty and pure love.

So my prayer is that no other mommy will have to go through what I did. My prayer is that you, too, will now see true beauty and pure love with every sonogram. And my prayer is when you see that next baby with Down syndrome lovingly tucked in her mother’s womb, you will look at that mommy and see me then tell her the truth: “Your child is absolutely perfect.”

Follow Amanda Dickinson’s journey on Adventures, Reflections, and Life Lessons.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

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