Meet Charlotte: 2020 Family Advocacy Week Champions

Charlotte is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Charlotte and her family will share information about her health journey, Cleveland Clinic Children’s role in providing Charlotte with necessary health care services, and why the public and our elected officials must invest in the future of kids like Charlotte.

At the 20-week ultrasound, doctors at a Cleveland Clinic Women’s Health office in Wooster, Ohio, gave Charlotte’s parents life-altering news.

“Going into the appointment, my husband and I were excited to learn whether our first child was going to be a boy or girl,” says Emily, Charlotte’s mother. “We were thrilled to learn she was a girl, but then shocked to also discover her many malformations from head to toe.”

From the ultrasound, the doctor could see Charlotte’s brain, heart, lips, kidneys, and liver were malformed. She was diagnosed with a multitude of conditions, including agenesis of corpus callosum, partial or complete absence of an area of the brain that connects the two cerebral hemispheres; a cleft lip and palate bilateral; a branchial cleft sinus; a congenital heart anomaly; a congenital renal anomaly; malrotation of the GI tract; hearing loss in her right ear; a Choledochal Cyst and malformation of the gall bladder.

“We were devastated and thought we were going to lose her,” says Emily. “We had just told our family and friends we were expecting, and now we had to call to tell them the horrible news. We were beyond grateful when we were able to meet with the Cleveland Clinic maternal-fetal medicine doctor the next day.”

Charlotte was born in the Cleveland Clinic's main campus where she stayed in the NICU for 72 days. To date, she has had 11 corrective surgeries and still has several to go. As an outpatient, she is now followed by more than 20 specialists. Charlotte’s parents feel her care at Cleveland Clinic Children’s is second to none.

“Coordination of her care has presented great challenges for our family, and managing her care has become my full-time job,” says Emily. “I had to quit my job and hire a babysitter regularly to keep up with the demands of Charlotte’s appointments, tests and phone calls.”

If you saw Charlotte today, you would never know her past, nor her current diagnoses except for a few visible scars and one hearing aide. Charlotte is resilient, joyful, tough, sweet, gentle, caring, loving, and trusting.

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