Ava Weitl had a VIP patient — her "Grampy," Paul DeShaw — and needed answers about his care, stat. He'd had a knee surgery at Mayo Clinic, and Ava wanted to compare the before and after X-rays. "She loves to play doctor, and Grandpa is always the patient," Christina DeShaw, Ava's mom, tells us. "She wanted to see pictures to make sure his knee was actually fixed."
Grampy suggested Ava try looking for the images in his online health record. But when the uber-curious 7-year-old tried to sign in to his Patient Online Services account, she hit a roadblock. "We figured out it had to do with the caps lock," Christina says. "I tried to coach her through it, but she didn't want my guidance." (Other parents may be able to relate.) Instead, Ava took her problem to the source: the team responsible for the patient portal. It was a meeting made possible by some of Ava's many friends (and fans) at Mayo Clinic.
Young Ava has been a Mayo patient since the day she was born. She was diagnosed with hypoplastic left heart syndrome before birth, and she had her first surgery just 90 minutes after she entered the world. Countless procedures and appointments have followed. "Ava has experienced the patient experience more than anyone I know," Timothy Nelson, M.D., Ph.D., director of the Todd and Karen Wanek Family Program for HLHS at Mayo Clinic, tells us. "Yet she does not let it define her but empower her. She is a true inspiration."
That empowerment was on display at a recent visit with Dr. Nelson, when Ava mentioned she was unable to sign into Patient Online Services. That conversation eventually made its way to staff in the Center for Connected Care, who were eager to meet with the young superuser. And on Dec. 23, Ava received an early Christmas present when she got to take her questions about the app to the source. "Her mind was blown into a thousand pieces," Christina tells us. "She was so excited. Everybody at school knew about the meeting. She felt so honored."
The meeting was a gift to the staff involved, too. While they often solicit feedback from users, those users aren't usually so young. (Or so cute, we're guessing.) "It was interesting to hear things from Ava's perspective," Julie Prigge, an administrator in Connected Care, says. "We were all impressed by her curiosity, her desire to help her grandfather with his care, and her persistence to get answers."
Those qualities impress Christina as well. "I'm in awe of this child every day," she says. "Talking with the team about the portal was such an amazing way to see her advocating for herself. She asked them all kinds of questions. It never ceases to amaze me what she gets curious about and where she takes it."
Dr. Nelson has an idea about where that curiosity may lead. "She is interested in so many things and is so perceptive," he says. "I think she's going to have a TV show modeled after personalities like Oprah." (We'd tune in.)
You can watch Ava and Dr. Nelson discuss hypoplastic left heart syndrome in this episode of Mayo Clinic Radio. And you can read more about Ava here. Then warm our hearts by leaving a comment below before using the social media tools to share this story with others.
Tags: Connected Care, Dr. Timothy Nelson, hypoplastic left heart syndrome, Julie Prigge, Mayo Clinic in Rochester, Patient Online Services, Patient Stories, Todd and Karen Wanek Family Program for HLHS