Tuesday, September 27, 2016

Dear Genetic Counselor

The way a diagnosis is delivered has a profound impact on how that diagnosis is accepted.  A grim delivery versus a hopeful one can make all the difference in not only how we internally process that diagnosis, but in how we choose to deal with it tangibly. 

"I'm sorry..."

"When do you want to schedule your termination?"

Low quality of life...never drive...never read...never walk...

I've been a special needs mom for 3 1/2 years and by now, I've heard every version of the diagnosis story possible, it seems.  But my story was different. 

A year after my son's birth, I wrote a letter.

April 2014

Dear {Genetic Counselor} and staff:

Now that our son is a year old, I wanted to take a moment and provide some feedback on the diagnosis experience that we received from you and the MFM clinic.

When we first met Kathryn, we'd been told that my quad test showed a higher than usual chance for Down syndrome. We were coming to MFM for the very first time, about to have an ultrasound. Kathryn was great at explaining everything that would happen during the ultrasound and immediately after. We talked about what tests we wanted to run and what those results could mean. My husband and I both appreciated Kathryn's professionalism.

During the ultrasound, during which several markers for Down syndrome were found, we were scared. Afterward, {the doctor} came in and explained that our baby's chances were 1:3 of having Down syndrome. We rejoiced to be having a boy but terrified of Down syndrome. {Our doctor} helped us to feel more secure. We returned the next day to have blood drawn for the MaterniT21 test.

Two weeks later, Kathryn called to let me know that it was positive. We visited her again to learn more about the diagnosis and what would happen next with our care. She explained all about how Down syndrome occurs, that it wasn't anything we did or didn't do, and what kind of life our baby could expect to have. And in this, her true compassion showed beautifully. Kathryn gave us hope for our baby as she explained that he would go to school with other kids, that he would almost certainly learn to read. That someday he very possibly could live independently. She painted a realistic, but ultimately hopeful, picture of life with Down syndrome. We were given options for termination and adoption, but when we turned them both down, she didn't bring them up again.

{The doctors who} cared for me throughout my pregnancy made me feel like me and my unborn son were equally important patients. I never once felt pushed to terminate. I've heard horror stories from friends about misinformation, lack of support, and a general sense of doom from doctors. I so very much appreciate the treatment we received from the doctors and staff at MFM.

Our son is now one year old and he's doing fantastic. I am so proud of him.

Thank you,

Heather Hicks

My actual result, given to me that day in the genetic counselor's office.


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