"Dear Doctor, You Were Absolutely Right About Everything."

October 5, 2016

 

Dear Doctor,

 

I first met you nearly six years ago when I found out I was pregnant.  While I knew little about what pregnancy actually entailed, I did know how much I wanted to be a mom. I was thrilled to be sitting in your room, waiting to hear that fluttering heartbeat for the first time.

 

Fast forward to her birthday. The day I was finally able to meet my daughter. I had a few hypothetical scenarios about how her birth would go and what those first few moments of meeting her would be like; none of which would actually play out the way I had envisioned.

 

Moments after she was finally placed in my arms after a dramatic delivery, I mentioned that I could not tell who I thought she looked more like--me or her dad.  Her face was rather swollen and her nose was unusually tiny.  And while I thought she was beautiful and perfect, deep in my heart I knew that something was...well...different.

 

I just was not sure what it was. Totally entranced by the sweet and incredibly precious baby nestled on my chest, it was then that you asked everyone to leave the room.

 

"There's something I need to tell you," you said.

 

I felt it coming.

 

"Okay..." I responded hesitantly.

 

You continued, "I believe your daughter has Down syndrome."

 

Your words impaled me and they rocked our world. My husband collapsed into the couch while I questioned you angrily.  I was mad...so mad that you would suggest this.  

 

How did you know?  Why would you say that? In my mind, you were wrong; and I wanted so badly to prove to you that you were. But deep in my heart I knew that you were right.  I just could not accept it in that moment--our moment. The one we had been dreaming of for nine months.

 

"She is exhibiting the typical traits associated with Down syndrome." You went on to explain in great detail why you believed it to be true by professionally communicating her unexpected diagnosis. With each word, my heart broke a little more.  

 

The tears poured over my baby and I stared blankly at my husband.  Eventually your voice faded into background noise as I started to imagine what this all meant for her and for us.

At one point I looked back at you. I noticed that you, too, were crying.  

 

You said that you were sorry, but not because you thought she had Down syndrome. You told us you were sorry that we were hurting in ways we were not prepared for; that you could see and feel our pain.  There in our labor and delivery suite, the three of us shared in grief during that bittersweet moment over my newborn daughter.

 

You put being a doctor aside and let me see a raw and real side of you at a time where your words could have negatively impacted us at that time as well as the days and years that would follow. You could have bombarded us with outdated stereotypes or lengthy statistics, but you didn't.  

 

You could have suggested negative opinions about what her future might be like, but you didn't. You had me at my most vulnerable state; a brand new mom right out of her very first childbirth.

 

Instead you chose this, "She is going to be amazing.  I promise you. She is going to do all of the same things that all kids do. And you guys are going to be just fine."

 

You reminded us of the time we opted out of all prenatal testing, where my husband and I decided that we would love and welcome our child exactly as they were; any and all surprises welcome. How we would not change anything anyway; which forced us to think about why we made that choice and if we truly meant what we said.  We did.

 

Aside from giving us resources and connecting me with a fellow mom, you also made sure that we were not alone in this new territory by checking in several times over our hospital stay and after. You patiently answered every question imaginable that I threw your way; constantly reassuring us that her extra chromosome would not limit her life or our's.

 

You helped me navigate from a place of fear and worry to this incredible journey filled with several triumphant occasions and profound love.

 

Even though it took time to heal and time to trust that what you had said would be true, I am incredibly thankful for your grace and tact in that delivery room and for every encounter we have shared together since.

 

Because of you, my own perceptions of Down syndrome changed before I even had the chance to get to fully know my daughter. Shortly after her birth I saw what you saw...a child whose life held value and worth. A child who was capable of all things; and above all else, that our daughter was just simply a child--exactly as we had hoped for.

 

And because of the way you delivered her diagnosis, I was able to accept it and understand it from a positive standpoint; without having to resent you or defend her. Something I know many parents cannot say about their own diagnosis experiences.

 

It is about way more than good bedside manner.  It is about the power of human nature, and how the words and actions we choose in those moments affect ourselves and others.

 

You were absolutely right about everything. She certainly is amazing and we really are just fine. Our daughter has enriched our lives and the lives of others in more ways than I could have ever imagined. 

 

From the doctor I picked off of a list to our biggest cheerleader and friend, you have become a permanent fixture in our hearts.

 

Thank you for everything. 

 

With love,

Becky Carey

 

Wife, mom and writer Becky Carey shares her personal experiences about parenting through her blog, Trisomy Twenty ONEderful (visit at www.deartessa.com), where she navigates life’s ever-changing directions.  Becky is also the author of 47 Strings:  Tessa’s Special Code; a children’s picture book that helps explain Down syndrome to siblings and peers.

 

October is Down Syndrome Awareness month.  The Down Syndrome Diagnosis Network’s (DSDN) hope this October is to bring light to the nationally recognized guidelines (https://www.guideline.gov/summaries/summary/34434?) to support medical professionals in delivering their next Down syndrome diagnosis. DSDN invites you to join their #DearDoctor campaign to share your own diagnosis experience by writing your doctor or genetic counselor a letter to let them know how they did delivering the diagnosis.  You can do so by participating in the DSDN’s Physician Feedback program: http://www.dsdiagnosisnetwork.org/#!feedback/c1gzt

 

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

 

Please reload

Featured Posts

AAP Guidelines - Care of individuals with Down syndrome

September 18, 2018

1/10
Please reload

Recent Posts

April 2, 2019

Please reload

Archive
Please reload

Search By Tags
Please reload