UNC Health Talk

A Mother and an Advocate

Patience and Jordan Leino’s firstborn, Isaac, arrived on a cold February morning more than seven years ago, his red hair and bright blue eyes a stark contrast to the gray, rainy weather outside the hospital that day. To his parents, he was perfect in spite of his imperfection—a boy who would utter few sounds in his five-month life but whose life would one day speak volumes.

Patience was 20 weeks pregnant when the soon-to-be parents discovered their son would be born with hypoplastic left heart syndrome (HLHS), a congenital heart defect that prevents the left side of the heart from forming properly. With only three chambers in his heart, Isaac, they were told, would need three open-heart surgeries in his first two years of life and eventually, perhaps, a heart transplant.

We can all work together to create solutions. Because of the way care was provided, and because of the communication that occurred and how it occurred, I see Isaac’s life as a success in relation to the cards he was dealt, and it has made me very grateful to this institution. Even though the outcome was bad, it was still a wonderful journey. –Patience Leino

“We thought we’d have a boy that might get a little blue when running around but otherwise would be okay as time progressed,” recalls Patience.

Upon his birth in February 2007, however, the Leinos learned that HLHS wouldn’t be Isaac’s only challenge. His doctors discovered other congenital anomalies that would complicate his care—a cleft palate and underdeveloped diaphragm among them. The projected two- to three-week stay following his birth turned into 110 days in the pediatric intensive care unit (PICU) at UNC Hospitals.

“Our new surroundings overwhelmed us at first—alarms, machines, critically ill children through every door, and that distinctive ICU smell,” Patience remembers. “Though mere miles from home, we felt like strangers in a foreign land.”

By 10 weeks old, Isaac had endured five surgeries including an open-heart procedure at three days old and been fitted with a tracheostomy tube to help him breathe and a gastrostomy-jejunostomy tube for all meals. On three separate occasions, the Leinos had “do not resuscitate” discussions with Isaac’s care team due to life-threatening complications. Still, they pressed on, praying for a miracle.

Then, at 24 weeks old, with all care options exhausted, Isaac died in his parents’ arms.

“Nearly our entire life with our son was spent within the hospital,” says Patience. “He took us on quite a journey.”

It’s a journey that continues today, seven years later. The Leinos now have two healthy children, 5-year-old Eliana and 3-year-old Evan, and Isaac’s memory lives on, his ongoing legacy evident in the family’s everyday lives. The latest chapter started with a call to Patience from Isaac’s former medical team in late 2009: would she be willing to serve on a small advisory group of families who had previous experience with the PICU?

Patience didn’t hesitate. She joined Tina Schade Willis, MD, associate professor of pediatrics and associate director of the UNC Institute for Healthcare Quality Improvement, in patient- and family-centered quality initiatives on the unit. Patience has since presented the team’s work at the 5th International Conference for Patient- and Family-Centered Care in Washington D.C. in 2012 and begun other initiatives.

This September, meanwhile, marked her first meeting as chair of N.C. Children’s Hospital’s Family Advisory Board, which formed in 2012. During her two-year term as chair, she will lead the board in educating clinicians in best practices of communicating with families, particularly in crisis situations; connect families and patients with hospital staff and projects so that their experiences can be used to improve future practices; facilitate multidisciplinary approaches to quality improvement measures; resource families with how to best collaborate with their child’s medical care team; and assist clinical staff during the challenges they inevitably face when serving scared families.

Because they brought us into his care process, honored our perspective, and treated us as partners, we had no regrets – every question had been welcomed, every avenue explored. Our roughly five months in the PICU were actually bittersweet, but the sweetness outshines the rest. –Patience Leino

Patience, says Dr. Schade Willis, is a natural fit to lead the Family Advisory Board. She believes that because of her abilities, Patience has the potential to reach families and providers beyond the Children’s Hospital, including across UNC Hospitals, the UNC Health Care system, and people touched by and involved with health care everywhere.

“She’s very eloquent,” says Dr. Schade Willis. “She takes in the entire feel of a room, has really great emotional intelligence, and understands how to relate to people inside and outside the Children’s Hospital. She approaches difficult subjects but does so in a way that others are receptive to.”

To Patience, the work is a legacy of love—a chance to honor the son she lost too soon.

“This is my desire, my focus, my heartbeat as chair: to utilize every avenue available to bring clinicians and families together,” Patience says. “Collaboration breeds strength, hope, trust, and ultimately healing for those touched by health care – patients and providers alike….Our family was given a tremendous gift during our son’s hospitalization and I desire that gift to be multiplied throughout the Children’s Hospital. By tapping into the collective wealth of experiences within the Family Advisory Board, I believe UNC Children’s best days are ahead.”