Patience Leino, parent and Senior Administrator for MOC External Activities at the ABP, received a 2017 Partners in Healing Award from the Patients’ View Institute (PVI). She accepted the award, together with the University of North Carolina at Chapel Hill (UNC) Medical Center, on Dec.7, 2017.
Leino received the award for sharing her story and a video about the challenging, but ultimately rewarding, journey she embarked upon following the birth of her son, who was born with Hypoplastic Left Heart Syndrome (HLHS). Her story was among nearly 60 that were submitted for award consideration.
"Isaac spent 110 days in UNC’s Neonatal and Pediatric ICUs — undergoing open-heart surgery at 3 days old and enduring four additional operations by his 10th week of life," says Leino. "In less than six months, my son was out of options and died in my arms."
Leino says she was an equal partner with Isaac’s medical team when it came to making decisions about her son’s care.
"They valued a scared mom across a hospital bed and engaged me in Isaac’s care," she says. "Through them, I became an expert in my son’s many health challenges and an involved member in his care team. UNC’s PICU did not merely treat my broken boy’s medical problems; they cared for my family. In doing so, they bestowed a gift I could never repay: the priceless ability to bury my son without regrets."
Since then, Leino turned her heartache into a passion for collaboration with medical teams and became a key ally to ensure the patient perspective is integrated at UNC and elsewhere. She volunteered for many years as a PICU Family Advisor and co-founded and chaired the North Carolina Children’s Hospital Family Advisory Board.
"It goes beyond patients and providers," says Leino. "Ultimately, we are people caring for people. When we can bridge that connection, when we can make those conversations happen and work together as a team, everyone is better off, no matter the medical outcome."
At the ABP, Leino coaches pediatricians seeking to claim Maintenance of Certification (MOC) credit for quality improvement work and reviews QI projects. She also trains residents about partnering with patients and families as a faculty member of UNC’s Institute for Healthcare Quality Improvement and speaks at national conferences about patient advocacy.
"I am forever grateful for my beautiful, broken son," Leino adds. "That precious, blue-eyed, ginger boy turned my pity into compassion, my fears into strengths, my tears into joy, my loss to others’ gain. His broken heart grew mine tenfold."
The PVI is a small nonprofit organization dedicated to organizing and amplifying the voice of the patient. The Impact Awards are PVI’s signature event.