In observance of World Down Syndrome Day:
I want to share a very moving experience I had recently at work. I connected in the most beautiful and profound way with a patient named Macey. She and her parents gave me permission to share our story.
It was a Monday afternoon when a 20 year old female patient with Down syndrome presented to my Dermatology office with her mom and dad for a skin check. Now, if you see me at my office, at the grocery store, the neighborhood pool, or basically anywhere on earth, and you have Down syndrome, we are automatically going to be friends. You will get extra love and extra attention from me because of your extra chromosome. You see, my precious brother, Rusty, has Down syndrome. He’s a year older than me and is the absolute light of my life.
But this sweet story is not about Rusty today. So I tell Macey’s family all about Rusty. As I’m doing Macey’s skin check, I’m getting to know more about her. She proudly tells me she won Prom Queen last year. She’s an incredible athlete and loves swimming. It sounds like she loves music and dancing as much as Rusty does. She is absolutely darling! I notice her open heart surgery scars and her pacemaker. In Dermatology, scars tell us a story. They tell us about the patient’s health history and what they’ve been through. It is clear, that despite her young age, Macey has endured a lot. Her mom notices me examining her scars and tells me she has an appointment the following day at the Down syndrome clinic at Children’s Hospital in St. Louis. We’re about an hour and a half from St. Louis in our rural Illinois community, so I get really excited and tell her, “my mom actually helped start the Down syndrome clinic at Children’s Hospital after my brother was born 36 years ago. She was a doctor at Children’s Hospital.” Macey’s mother immediately asks, “Who was your mom?” I tell her my mom’s name and I see tears in her eyes. “I knew your mom.”
My mom was a pediatric cardiac anesthesiologist who was tragically killed in 2011 when she was hit by a car while riding her bike. Macey’s mom tearfully tells me that when Macey was just a few months old she had her first surgery at Children’s. My mom, tiny-but-mighty at 5 feet tall, came to talk to the family and take their precious baby back to surgery. Macey’s mom said she will never forget the image of this small but confident doctor taking her baby away from her and a nurse reassuring her: “Don’t worry. Her son has Down syndrome.” Macey’s family requested my mom for her subsequent surgeries. They were devastated to learn that she died.
Wow. If this wasn’t the “full-circle life experience,” I don’t know what is!
I don’t live in St. Louis anymore and my mom died more than ten years ago. I cannot believe how far reaching her impact was. It blows me away to think of my mom caring for Macey, as a precious baby in need of a life-saving heart surgery. Now here I am – 20 years later – a dermatology PA, taking care of Macey: a healthy, thriving, beautiful adult.
As many health care workers can relate, I had been struggling with work and my emotional health at the time I met Macey. The grief and burn-out from COVID has been heavy and has weighed on so many of us as we navigate life and our jobs in medicine during the pandemic. My experience with Macey was an amazing reminder to me to get back to my “why.” “Why do I do what I do?” Because of my mom. Because I believe in medicine and its ability to change and improve lives. Because I believe in the power of healing.
I am so thankful for the time I had with my mom, although short, she inspired me and will continue to inspire me as long as I am living. I am also thankful for my sweet brother with Down syndrome. He has taught me so much about patience and acceptance. And I am thankful for my job – despite the challenges and the occasional feelings of burn-out. My job reminds me what a privilege it is to serve people in this way.
As a health care provider, I go to work every day expecting to help my patients. I expect to be there for my patients and to give them what they need during their appointments with me. But sometimes it is the other way around. Sometimes our patients give us a gift we didn’t know we needed. Meeting Macey was an unexpected and invaluable gift. She helped me remember my “why.” Meeting Macey has certainly been a life experience I will never forget. I know my mom is looking down on Macey and me, proud of how far we both have come.
Frances Deadmond, PA-C
Springfield Clinic Dermatology
Frances Deadmond is a Dermatology PA with over 5 years of experience practicing in rural Illinois. She travels to satellite rural health clinics and works in a different office each day. She is a member of the AAPA, SDPA, Diversity in Dermatology, and PAs for Women Empowerment. She is passionate about educating her patients on their skin diseases. She has learned to be a fierce advocate for her patients and works tirelessly to get them approved for the medications they need. Outside of work, she is a coach’s wife and mom of two darling, curious, and head-strong daughters. She enjoys yoga, meditation, craft beer, and a full 8 hours of uninterrupted sleep.