Dear Geneticist, As I Sat There Listening To You, I Was Mad

October 5, 2016

 

 

Dear Geneticist, 

 

When we met with you for the first time, our daughter was seven months old. You didn't officially give us her diagnosis, but you were the first to talk to us about Down syndrome. In those seven months since we received her birth diagnosis, we had been through a NICU stay, multiple sleep studies, and open heart surgery. We had also fallen completely in love with our daughter and her growing personality. We felt immense pride in watching her meet milestones.

 

Then we met you. For 30 minutes you read off a paper and told us all the things she would NOT do. You told us all of the medical complications you were sure she would have in her life. You told us negative after negative after negative. Not once did you look up and actually look at our baby while you told us how hard our life would be simply because she has Down syndrome. Not once did you include any positives about raising a child with Down syndrome.

 

Then you said you wanted to do an assessment on our daughter. You finally looked up and looked at her. Your first remark was "Oh! She actually has pretty good tone!" We continued to tell you many of the things she could do and what she was working towards accomplishing. You actually seemed surprised that our daughter was doing well.

 

As I sat there listening to you, I was mad. I was mad that you didn't take the time to get to know the baby you were speaking so little about. I was mad that you were diminishing her beautiful life when it was just starting. But what angered me the most was thinking about how you must have this same conversation with pregnant women who haven't met their child yet; that you have this conversation with parents of newborns who haven't seen what their children can accomplish yet. I was angered by the fact that your words, your reservations and restrictions for potential, are likely affecting outcomes for children with Ds. How many women terminate their unborn baby with Ds after talking to you?

 

People with Down syndrome are people. Yes, some of the things you mentioned we have to be aware of - cardiac complications, breathing difficulties, increased rate of infections, multiple therapies - but you left out even more than you can ever imagine. You left out the amount of love a mother feels when bonding with her new baby. You left out the pride when your baby meets yet another milestone (because they WILL meet them!). You left out being able to see the world through your child's eyes and the amazement and wonder that so many adults often lose sight of. You left out the amazing bond and friendships I would make as her mom - the way us moms connect to each other through unspoken words and how we are now part of a really awesome club with tremendous support.

 

You left out that my daughter would make friends and go to school and be an important and integral member of her community. You left out how she would throw tantrums and be a picky eater and have likes and dislikes, just like EVERY other toddler. You left out all the wonderful and amazing and typical parenting things that we would living. You left out all her dreams, visions, wishes and potential. You didn’t mention any organization that provides support or any local resources that we could benefit from.

 

Our daughter is over two years old now. She is a bright and bubbly little girl with a lot of family and friends that love her. She is meeting milestones, constantly changing and growing, and blowing us away. She is attending a typical school with her typical peers and thriving.  I will never forget my meeting with you and your words will be forever engrained in my memories. But I will not let your words define my daughter's future.

 

So next time you meet with a pregnant woman carrying a child with Down syndrome, and you have to tell them about what to expect... Tell them to expect greatness and to always presume competence. 

 

Sincerely, 

Eleanor’s Mom

 

 

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

 

To give anonymous feedback to the physician that delivered your diagnosis, please click here to get to DSDN's Physician Feedback Program: http://www.dsdiagnosisnetwork.org/#!feedback/c1gzt

 

Marissa Dunn is a labor and delivery nurse, wife, daughter, sister, and most importantly, mom to Eleanor. She is locally involved in the Ds community and loves meeting new families. She is an advocate for inclusion and is on the Inclusion Committee at her temple. http://LifeLoveExtra.blogspot.com

 

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