Andrea Hsu, NPR
Owen Danyo is shown at 3 and a half months old with his mother, Marguerite Stabosz. He suffered brain damage before he was born, and doctors didn't think he would live for long. But he is now 5 months old.
The pediatric palliative care team at Children's Hospital of Philadelphia helps take care of children who are dying. These doctors believe that listening to kids can be just as important as listening to parents, and that if you don't talk openly with children about death, their fears could be worse than the reality.
Their work is filled with much sadness and heartache. But sometimes — not often enough, but sometimes — there are happy surprises.
Owen Danyo, who is now 5 months old, has surprised his doctors and his parents.
Before he was born, Owen suffered a brain injury. MRI scans showed severe brain damage. He had seizures, and doctors didn't think he'd make it off the respirator.
The palliative care team from Children's Hospital of Philadelphia's was called in.
In the end, Owen made it off the respirator fine.
When he was 10 days old, his parents, Marguerite Stabosz and Bob Danyo, brought him home to join their other two children in their rustic house in rural Pennsylvania.
They didn't know whether they'd have to be thinking about a funeral — or if they could dare to imagine a life ahead.
"The uncertainty is the hardest part about it. The anticipatory grief has been postponed — or hopefully, eliminated," said Bob Danyo.
For now, baby Owen is doing well. Chris Feudtner, a pediatrician from the pediatric palliative care team, makes home visits to check on Owen. On a recent trip, he listens to Owen's heart and lungs, squeezes his abdomen and rotates his legs.
Owen's parents have begun physical therapy for him, and a therapist is working with the parents, teaching them games to help his development.
They still see a neurologist at the hospital — and the exact prognosis for Owen remains a mystery. But after expecting the worst, the parents say, now every advance Owen makes is utter joy.
The Children's Hospital of Philadelphia's palliative care team is able to exist because the hospital is willing to back it financially. The program is never going to be profitable, or even able to support itself. It gets by with funding from the hospital, private foundations, individual donor grants and a small percentage from insurance payments.
But the palliative care team would like to show there can be a new business model. They say there would be less stress on the staff if hospitals would confront the sadness, fear and anger of children dying. If there's less stress on the staff and less burnout, then maybe they will stay longer, the argument goes.
By investing themselves in these children, fighting to give them the best life they can possibly have in the time they have, this team draws its own strength. As Chris Feudtner puts it, "This job works to awaken me to what matters most."
NPR's Andrea Hsu produced this story.