Having lived with a heart condition her whole life, Alaina has learned the value of being an advocate for herself. Today, she uses her journey in navigating heart health to help support the community of kids around her going through a similar experience.
Shortly after being born, Alaina was diagnosed with a ventricular septal defect. At just 6 months old, she underwent open-heart surgery to repair it from Victor Morell, MD, chief of the Division of Pediatric Cardiothoracic Surgery at UPMC Children’s Hospital of Pittsburgh and co-director of the Heart Institute at UPMC Children's.
It wasn’t until later in her childhood that Alaina’s doctors discovered a heart blockage that would require her to use a cardiac device.
“It was hard to discover a new diagnosis again,” says Keturah, Alaina’s mother. “There were a lot of emotions, but learning as much as we could about it helped ease those emotions. The team welcomed questions, and it helped us become advocates in Alaina’s health care.”
As she got older, Alaina found a unique voice through the Electrophysiology (EP) Community Group at the Heart Institute at UPMC Children's.
Founded in 2024 by Alexis Bearer, BSN, RN, and Lauren Lorenzi Quigley, PhD, the community group enables patients with channelopathies, sudden cardiac arrest, or cardiac devices to connect and share their stories with one another.
The monthly meetings give patients the space to discuss their experiences, engage with the clinical team, and talk about navigating life and maintaining mental wellness with their diagnosis.
When Alaina learned of this community, she immediately wanted to participate in it.
“I love it because I get to talk to other kids and hear about their journeys,” Alaina shares. “I love to do the activities, hear from the doctors, and talk about what we’ve been through with people who understand what it’s like.”
In addition to participating in the group, Alaina takes pride in being a mentor and helping younger kids through their experiences.
“Going to Heart Camp and meeting kids with similar experiences helps me know I’m not the only one going through this and that I won’t be the last,” Alaina says. “It gives me insight into what other people are going through and how similar it is to me.”
As a parent, it brings Keturah comfort to see her daughter embracing her heart health journey.
“These relationships help them to be advocates of their own care and build relationships with the clinical team,” Keturah says.
Alaina understands the unique challenges that can come with a new heart diagnosis and using a cardiac device. When giving other patients advice, she reminds them that they’re not alone and not to feel afraid or embarrassed.
“It takes bravery and courage to be in that position. Always be proud of yourself for that,” she says. “Although it may seem really tough right now, know that everything will work out in the end and have hope for what’s to come.”
For both patients and parents, she encourages them to ask questions and stay educated.
“These devices are lifesaving,” Alaina says. “It’s important to do research about them and know what questions to ask so you can prepare yourself the best way you can.”
Leaning on the EP Community Group has allowed Alaina to connect with others and find strength in her heart health journey. She hopes to inspire other patients to do the same.
“I’m really grateful for the team and the EP group,” she says.
To join the EP Community group, or to contact the team with questions, email epcommunity@upmc.edu.
Alaina’s treatment and results may not be representative of all similar cases.