Meet Grace: 2020 Family Advocacy Week Champion
Grace is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Grace and her family will share information about her health journey, Dell Children’s Medical Center of Central Texas’ role in providing Grace with necessary health care services, and why the public and our elected officials must invest in the future of kids like Grace.
After her adoption from China, Grace had two open-heart surgeries to help correct a severe congenital heart defect. She had her first open-heart surgery when she was 20 months old and another when she was 3 years old.
Fast forward several years and Jamie, Grace’s mother, noticed her daughter’s stamina level had steadily decreased.
The doctors in her hometown didn't know how to best help Grace, so after seeking out a second opinion, it was determined she had a leaky mitral heart valve and needed surgery. Grace was referred to the specialists at Dell Children's Medical Center in Austin, Texas, because of their expertise in complex cases.
The family met with the cardiac team in July 2019 and made plans to repair her heart in November. However, in the first week of middle school, Grace was admitted to Dell Children’s for heart failure. “We were waiting for the surgery in November, but I think school just put a lot of strain on her heart,” Jamie said.
Grace was diagnosed with a rare congenital heart defect and was admitted for heart failure. The doctors ran many tests including EKGs, echocardiogram, blood work, X-rays, and cardiac catheterization.
“Emotionally, it put us in survival mode,” says Jamie. “Grace was scared, and I was really afraid I might lose her.
The doctors placed a ventricular assist device (VAD) to support her heart function and blood flow after Grace coded early one morning and required two hours of CPR. This mechanical pump will give Grace support short term, but eventually, she will need a heart transplant.
“Dell has been such a light during the darkness of figuring out what was causing the decrease in Grace's stamina,” said Jamie.
Today, Grace is better, but she is still in a transitional period and the doctors continue to monitor her closely. Music is a big part of her life, and she is also taking singing lessons at School of Rock. She enjoys spending time with her dog, Jett, and playing Nintendo Switch. Grace just finished 6th grade.