To the Doctors Who Supported Us After My Son’s Down Syndrome Diagnosis

Dr. Stamilio, Dr. Urrutia and Dr. McPherson,

You may not remember me. I might be just another pregnant mother in a sea of patients you care for regularly. But I remember the three of you.

Dr. Stamilio, I remember your kind and gentle voice when you told me that my unborn baby had a high probability of being born with trisomy 21, after a routine first trimester screening. You made sure I knew what all of my options were, but you didn’t tell me that my child would never be able to function and live within a normal society, words that are still too often heard by parents receiving a diagnosis. You provided me with pamphlets and materials and introduced me to Erin, the genetic counselor, who gave us very detailed information on our prognosis. We continued to see you at follow-up ultrasounds, and you remained positive throughout our pregnancy, every time you spoke to us, even when we told you we were keeping our son.

Dr. Urrutia, You were the first physician I saw upon returning to my regular OB appointments at the clinic. You were so positive and told me about your friend from med school who had authored books about siblings with Down syndrome. You gave me your cell number and you emailed me to check in on me and provide me with the titles of the books you had mentioned. You followed my case, and you sent me messages regarding our ultrasounds and test results and about how everything looked great. I always delete all of the appointment reminder emails I get in the UNC myChart system, but I haven’t been able to bring myself to delete your messages, almost 2 years later.

Dr. McPherson, You delivered my beautiful 7 pound 6 ounce baby boy, just after midnight on June 4, 2015. I was a wreck. My labor went so fast, and when I got to the hospital I was already 7cm. I made it to 10cm within the hour and felt the need to push while I was still in the triage room. I was scared, panicked, too late for an epidural and an all-around sloppy mess. I knew my life was about to change drastically.

I was entering the uncharted territory of the special needs world, and I was afraid. I was losing the ability to completely protect and shield my son from the outside world. There were so many people in the room, asking me so many questions and preparing for the unknown with my baby. And it was all happening faster than I could keep up with.

But you, well, you were calm. You were funny. You were amazing. And you seemed like someone I would want to hang out with outside of the hospital. I remember feeling disappointed that this would be the only time I was a patient of yours, and the imaginary friendship I had created in my head would soon be over. You may remember me saying how upset my sister would be that she missed the delivery because I waited until we checked in at the hospital to call her. She came bursting into the room about 15 minutes after the delivery, hysterically sobbing, and you looked at me, laughed and said, “This must be your sister.”

I have wanted to write this letter for a while now, but I wanted to make sure I adequately described my feelings throughout my pregnancy, and the impact each of you made on them. It makes me very emotional to think about. From the second Kendall was born, I threw myself into the Down syndrome community. I immediately joined the board of a just-formed non-profit organization called GiGi’s Playhouse and it changed my life. After a year of extremely hard work, we opened our doors on June 18, 2016. I hope you will take some time to check out the website.

Kendall’s picture has been up at all the local hospitals over the past 6 months to bring awareness to the amazing world of Down syndrome. I hope if you see it in the future, you will look at it with pride and think to yourself, you were part of bringing an amazing human being into this world. One who is going to make a difference for so many families, in addition to the numerous lives he has already changed.

We are always at UNC hospitals for various appointments, and Kendall goes to 4 different types of therapy per week. Kendall has had surgery for ear tubes, adenoid removal and hypospadius repair. He has been to the cardiologist, neurologist, ophthalmologist, urologist, pediatrician and ENT more times than I can count. But he is thriving. And he is happy. And he is the light of my life. I have loved every second of our “new normal,” and I have met too many wonderful people  to list. I am so thankful I was chosen to be his mom, and I am so thankful I was given you as one of my providers. My heart is so fulfilled.

Thanks again for all that you have done for my family. I will never forget you.

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