Dear Doctor, "You Remembered that she was a Baby First.

September 30, 2016

 

 

Dear Doctor,

 

You were highly recommended by my friends and coworkers, so when I got my positive pregnancy test one morning in March, I called you right away. I had one healthy baby and three miscarriages, and wanted to be seen right away; you didn't disappoint. I had an appointment three days later, where you did a transvaginal ultrasound even though I was only 4 weeks along and there was nothing yet to see. You put me on progesterone and made an appointment to see me in 4 weeks. 

 

The first trimester crept by as we saw our little gummy bear and then the heartbeat. We seemed well on our way to a picture perfect pregnancy. You couldn't have known at the time that this pregnancy was different. I came in to your practice a healthy, pregnant, 28 year old. 

 

With each appointment you practically ran into the room. Your energy and speed made my husband and I laugh as we imagined you running in barely in time to catch our baby when it came time to deliver. We didn't know it yet, but we wouldn't get to find out if that would happen. 

 

My husband and I were eager to find out the sex of our newest bundle. So at 18 weeks we came to my appointment with our first child in tow. At 2 years old she was excited to find out if she'd have a baby brother or sister. After checking out the heart, limbs and head you finally got to the part we'd been anticipating. Another girl was on her way and I daydreamed about names and matching outfits with her big sister. 

 

Then you pulled out my file and noted that my quad screen came back slightly elevated. My odds were 1 in 259 that our daughter would have Down syndrome. You assured us that it was probably nothing, but offered the noninvasive panorama test. After a brief explanation of the test I agreed, had my blood drawn and went on my way, happily planning a nursery and thinking of names. 

 

I pulled out baby clothes from my first and lovingly washed them. We chose a name, Everly Caroline, and I hung it on her nursery wall. Two weeks went by without a second thought of the panorama test, Down syndrome, or you. And then, on July 25th, in the checkout line at Walmart, my cell phone rang. Distracted, I answered. 

 

"Mrs. Bill?" Your voice didn't register any alarm bells, even though doctors don't usually call with good results. 

 

"Yes?" I said.  

 

"Mrs. Bill. We received your panorama test results. Your daughter has Down syndrome." 

 

You paused. I'm sure to give me time. To formulate my thoughts, to cry, to scream. I'm not sure what the usual response is. But in my hurried state your words didn't quite register. 

 

"Okay. Thank you," I said, and hung up the phone. 

 

I hung up on my diagnosis call. I didn't even realize it WAS a diagnosis call until I'd paid for my groceries, loaded them and my chatty 2 year old in the van and sat down and then it hit me like a ton of bricks. 

 

I called back and you answered. You never answer your phones, your receptionist does. But you must have noticed something wasn't right about my non-reaction and sat by the phone. Thank you for waiting for my call. Thank you for repeating the diagnosis and personally setting up a time for me to come in the next week. 

 

Thank you for talking to my husband, who called you right after I called him at work. He had more questions than I did. He's a planner. A researcher, and he wanted to know numbers and facts. Thank you for giving them to him. 

 

Thank you for asking if we had a name picked out when I came to my follow up appointment. You remembered that she was a baby first. You offered amniocentesis and said we had options. You presented them to me, and then never questioned my answer. 

 

"She's our Everly," I said forcefully. Even though I wasn't quite sure what that meant yet. You nodded and asked how I was feeling before referring me for my amnio. 

 

Thank you for giving me the chance to decide what I wanted. Thank you for presenting me with all of my options, and then standing with me when I made my decision. Thank you for continuing to provide my prenatal care, and for finding her duodenal atresia even before maternal fetal medicine did. That discovery would mean that I couldn't deliver with you. I would have to drive an hour away so she could be delivered at the hospital with a level 3 NICU and a surgical team to correct her duodenum. 

 

And thank you for taking one look at her when I brought her with me to my postpartum appointment and declaring her perfect.  

 

 

Sydnie Bill is a teacher, a mom to three girls, and a military spouse. She blogs at www.happilyeverlyafterdownsyndrome.wordpress.com about Down syndrome and her family.

 

 

Let your doctor know how they did delivering the diagn

 

osis, anonymously, by participating in DSDN’s Physician Feedback program at www.dsdiagnosisnetwork.org/#!feedback/c1gzt

Connect with the Down Syndrome Diagnosis Network if you have a young child or are expecting a little one with Down syndrome for information, connections and support. www.dsdiagnosisnetwork.org

 

 

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