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Dear Doctor Who Gave Us a Down Syndrome Diagnosis, This Is What You Should and Shouldn't Have Said

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Dear Doctor,

We tried for months to conceive, and we’re so thrilled to be pregnant again. Remember how excited I was at our first prenatal visit? Our 2-year-old daughter is going to be a big sister! My family and friends are so excited for us. I told everyone at work that I had the Panorama blood test and will find out the sex soon. I’m only 12 weeks pregnant. I’m anxiously awaiting your call. I think it’s a boy. My husband thinks it’s another girl. 

You’re calling me now. I see the number on my cellphone. I’m in a work meeting. I quickly hop up and run into the break room to answer the phone. It’s your voice. It’s not your nurse. Why would you be the one to call me if everything is OK? I can feel my body going numb. My knees are weak.

You’re about to tell me that my sweet baby has Down syndrome. I’m going to be devastated, scared and sad. I’m going to cry and yell, “No. No. No.”  Please, don’t say you’re sorry. I still have a child inside me. I still have a baby who is part of me and part of my husband. I still love this baby. Again, please don’t say you’re sorry.  

Before you tell me the news, make sure you have all the information I could possibly need. Don’t give it to me all at once.  Just have it ready if I ask. Make sure you have the number and website and literature from the local Down syndrome association. These people will be my lifeline. 

You just told me my sweet baby has Down syndrome. Please don’t ask me if I plan to terminate the pregnancy.  You see, I trust you. You’re my doctor. If you say “termination,” this confuses me. Am I supposed terminate the pregnancy? I don’t want to be asked this question. 

You just told me my daughter has Down syndrome. Please tell me I can still have dreams for her, plans for the future. Tell me this may not be what we’d planned but that you know children with Down syndrome can have happy, fulfilling lives.  

Just listen, be supportive and have factual information ready. Acknowledge that you don’t know everything about this diagnosis. It’s better than giving me the wrong information. Tell me my child may have some or none of the medical complications. Tell me there are adults with Down syndrome who have graduated from college, have jobs, careers, marriages, their own homes, businesses, driver’s licenses. 

When you send me to a specialist, make sure they’re sensitive, knowledgeable about Down syndrome and don’t talk above our heads. We’re going to see them a lot and need to make sure it’s a good fit for us. Tell us if we don’t care for this particular doctor, it’s OK to find someone else. 

Although this pregnancy might seem like it will be normal, treat me a little special. Make sure I don’t have to wait long to be seen when I come in for my prenatal visits. Be positive and upbeat but sensitive to our feelings and questions. We’re going through a lot right now. 

I’ll need to be induced to avoid further complications from an already difficult pregnancy. Tell me you’re so happy we made it this far and my baby is a fighter. Tell me you’re excited to help us bring this little champion into the world. 

You just delivered my sweet baby girl. Before you left, you put your hand on my arm, hugged me and said “Congratulations. She’s so beautiful. I’m so happy for you.”  That was the absolutely the right thing say to me. Thank you. 


Lorelei’s  Mommy 

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Originally published: January 21, 2015
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