I wanted to write you about my experience with my prenatal diagnosis of Down syndrome. Although the initial diagnosis was delivered by our genetic counselor on a Thursday evening, you took over from there immediately. I’d have to say, you did everything right. You called me the next morning to tell me that you saw my test results and you simply said that I should come into the office to discuss next steps.
You never said “I’m sorry” or portrayed a negative tone. Out of fear, I have to admit that I was afraid you were going to push me in one direction or another, so without first understanding the risks and options I hastily told you over the phone that I didn’t want to terminate the pregnancy. You went with that and gave me my space and planned to meet with me after the weekend.
When we met to discuss things further, I don’t recall that you had a lot of resources to provide me. I think you were leaving that up to the genetic counselor. I do remember you stepping away to your office for a few minutes to find a website you wanted to write down for me. I can’t remember what it was but it wasn’t easily at your fingertips. It was in that moment that I realized this kind of diagnosis doesn’t happen every day.
For the next three prenatal appointments you teared up as I cried but you explained you were being sympathetic to my situation and not sad for my baby. I appreciated that. When I told you I wanted to know about termination you went ahead and gave me the unbiased facts, just as you were unbiased in giving me accurate facts about raising a child with Down syndrome.
And the most important thing is, in my opinion, to this day I have no idea if you agree with my choice. I have no idea what you would have done if you were in my position. You were completely non-judging and nothing but supportive with every decision I made throughout my entire pregnancy.
You were present to deliver Geneva and after the successful delivery you gave me a hug and congratulated me, which spoke volumes.
A few months ago there was a letter to a doctor from a woman that went viral. She did not have a good Down syndrome diagnosis experience. Many others jumped in to say that they didn’t have positive experiences either. These doctors may not have seen the guidelines published by the National Society of Genetic Counselors regarding delivering a Down syndrome diagnosis.
You, on the other hand, are a model example of how a doctor should treat their patient during the entire pregnancy. I believe that your tone contributed to the foundation of my attitude for the remainder of my pregnancy and beyond, and my attitude has been positive and optimistic, and for all of that I am thankful.
For anyone who would like to let their doctor know how you feel about the way they delivered your diagnosis, you can do it anonymously by participating in the Down Syndrome Diagnosis Network’s Physician Feedback program at http://www.dsdiagnosisnetwork.org/#!feedback/c1gzt
If you have a young child or are expecting a new little one with Down syndrome, connect with the Down Syndrome Diagnosis Network for information, connections and support at www.dsdiagnosisnetwork.org.
This essay was originally written for the Down Syndrome Diagnosis Network in October, 2016. You can click here to read it and other Dear Doctor letters.