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Building Bridges: Improving quality of life for young patients, families

Bridges Pediatric Palliative Care Program
Irving Lopez was born with hypoplastic left heart syndrome, a rare and complex congenital condition that prevents the left side of his heart from fully developing. (Lopez family photo)

Irving Lopez was born with hypoplastic left heart syndrome, a rare and complex congenital condition that prevents the left side of his heart from fully developing. As a result, the right side is responsible for pumping blood throughout his entire body.  By age 13, Irving had undergone more than five open-heart surgeries at OHSU Doernbecher Children’s Hospital in Portland, Oregon. He will continue to battle the effects of this condition for the rest of his life.

“We spent a lot of time in the hospital completing treatments and recovering from surgeries, but his health was getting worse,” recalled Irving’s mother, Alma. “We know there is no cure for this condition, and we wanted to let Irving be a kid. We wanted to be at home, together as a family.”

That’s where the Bridges Pediatric Palliative Care Program at OHSU Doernbecher comes in. Since 2003, Bridges, an interdisciplinary team of physicians, nurses, nurse practitioner, social worker and chaplain, have provided comprehensive care to children who face long-term, life-threatening conditions. Palliative care is specialized health care for people and families facing serious illness with a focus on providing relief from the symptoms and stresses associated with such a medical journey.

From counseling, education and pain management services, to bereavement support and cross-organizational health care coordination, the goal of Bridges is two-fold: to help ensure the unique needs of each patient and family are met; and, to return a patient and their family to their home and community to more comfortably cope and deal with their health care situation.

Bridges Pediatric Palliative Care Program
Kathy Perko, program director of the Bridges Pediatric Palliative Care Program at OHSU Doernbecher checks-in with patient Michael Wilson. (OHSU)

“It is not considered normal for anyone, let alone a child, to acquire a life-threatening illness such as cardiovascular disease, renal failure or cancer,” said Kathy Perko, M.S., C.P.N.P., program director of Bridges. “There are often many challenges when dealing with uncertain situations, but one thing is certain, parents know their child best. So, when a family says ‘We want to go home,’ and you can help them do that, that is what is important.”

And that is exactly what the Lopez family did. With the help of the Bridges team, they returned to their home in Gresham, Oregon, and reveled in the company of their friends and neighbors as a family.

“When we decided to return home, we were told that Irving may only have a few days left of life. That was two years ago,” Alma said. “We immediately noticed a difference in his demeanor, and his health. He was just … better.”

Although Irving receives the majority of his care at home with the help of a community home hospice nurse, he returns to OHSU Doernbecher every four months. The Bridges team helps to coordinate his care across multiple clinic visits so the family doesn't have to. “It’s a blessing,” Alma said. “We get to forget about all of the hospital stuff and just focus on Irving.”

For nearly 15 years, Bridges, the first pediatric palliative care program in Oregon to incorporate multiple health care disciplines to enhance overall services, has been caring for children and their families before birth through young adulthood.

“Difficult, yet important, decisions take place at all ages and at all stages of an illness,” said Perko. “We strive to ensure that every family is supported in these decisions, and when the journey does come to an end, that the family’s support will continue throughout the community in which they live. Not just at the hospital.”

Bob Macauley, M.D., F.A.A.P.
Bob Macauley, M.D., F.A.A.P. (OHSU)

It is this innovative thinking that led Bob Macauley, M.D., F.A.A.P., to accept a position as the first medical director of the Bridges Palliative Care Program, and the Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at OHSU Doernbecher.

Previously, Macauley founded the pediatric palliative care team at the University of Vermont Children’s Hospital. He also serves on the board of directors of the American Academy of Hospice and Palliative Medicine.

“OHSU Doernbecher is an amazing place,” Macauley said. “In many institutions, pediatric palliative care is an afterthought. However, the Bridges team has been providing outstanding care for many years, and now, through the remarkable generosity of the Cambia Foundation, we have the opportunity to build on those successes and expand our program throughout the children’s hospital, Oregon, and the entire region.”

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