Casey Barnes was born with multiple life-limiting conditions, among them quadriplegia cerebral palsy. She cannot move, suck, swallow, gag or blink. To the untrained or uncomprehending eye, she looks uncommunicative, inert, a small person with extreme breathing problems (her airway must be suctioned every 15 minutes or so). When we met, I had no idea how to interact with or even how to be around her, let alone how to approach her with a camera.
But my hesitation and awkwardness soon evaporated as I learned to be with Casey in the context of her family and her medical team.
Casey, 9, lives a normal family life. She is a girl scout. Other kids buzz around her. She attends a ballet class for children with special needs. She is cared for by a team of doctors, nurses, social workers and, most important, her family. The doctors depend on the family. Better than anyone, they can intuit what she wants, or if she is unhappy or in pain.
Casey’s care is managed by the pediatric pain and palliative medicine team at Dell Children’s Medical Center of Central Texas, in Austin. Led by Dr. Craig Hurwitz, the interdisciplinary palliative-care team works with Casey’s primary medical team (which includes a number of specialists) to provide family-centered care. The focus of pediatric palliative care is on quality of life and the alleviation, as much as possible, of suffering caused by advanced illness.
I followed two other families whose critically ill children are cared for by the palliative-care team at Dell: Marley Bedford, 5, who has a rare form of terminal dwarfism, which affects fewer than 100 children worldwide; and Gerardo Reyes, 2, who suffers from excess fluid on the brain and other conditions.
Rachel Carnahan, 29, a social worker on the palliative-care team, is considered by all three families to be the glue that holds everything together. This means more than the coordination of medical care; she also provides psychological and spiritual nurturing. She is upbeat, straightforward and practical. She is the families’ supporter, advocate and voice — and not only at treatment meetings with the medical staff; she is also the person a distraught mother might email at two in the morning.
I came to this project (later supported by a Rita K. Hillman Foundation grant) after reading “Lives Less Ordinary,” by the physician Jerome Groopman, in The New Yorker. As Dr. Groopman makes clear, pediatric palliative care is a relatively new subspecialty that was born out of the hospice movement. But pediatric palliative care has a different mission — to sustain the best quality of life for a child and her family.
I had just moved to Austin, and to find that the nearby Dell Children’s Medical Center had a pediatric palliative care program was extraordinary good luck.
I think photojournalists are drawn to documentary subjects for a reason. I have always been curious about the varied lives of women and children. This particular project gave me an opportunity to begin to understand what it is like for a family to support a critically ill child, and for a palliative-care team to support that family. Perhaps it is a way to face my own fears.
For most people, a baby’s diagnosis of multiple complex illnesses would be terrifying. Many imagine that parents facing such a situation spend their lives in survival mode: that is, simply coping.
What I saw was something else entirely. Yes, the parents must cope, but they are doing much more. They address these challenges head-on. They are ordinary people who have become experts on their children’s conditions. They have learned to take control when and where they can. And beyond all else, they love.
It’s easy to look at these parents and put them into the facile and distancing category of saints or heroes. They are regular people in an extraordinary and exceedingly complex situation. They don’t want sympathy. They are grateful for the opportunity to love their children.
Please see the slideshow and article at The New York Times LENS blog, and the accompanying video here.
