The Sunflower program

by Kate Vanskike Smith

Sometimes, babies born with chromosomal abnormalities or other life-limiting conditions don’t die early in infancy—often, they are expected to live well into childhood or even become young adults. These patients and their families are candidates for the Sunflower supportive care program, named for the flower that always turns its face toward the sun.

Children’s Hospital patients who may need palliative care most often come from the Neonatal Intensive Care Unit and Pediatric Oncology, but any family in any unit may benefit from having extra support.

“There is no way to predict which patients are the most appropriate candidates or when we will need to become involved,” says Krista Robak, child life specialist. “Our purpose is to coordinate care right away, when the disease first starts to take a turn for the worse rather than later when parents are having to make tough decisions.”

The ultimate goal is to help patients do what they want to do. If they want to visit Grandma, or do their homework and attend graduation, the Children’s Hospital staff can try to facilitate that.

For example, last year, they had a teenage patient who wanted to be home for July 4th because it was her favorite holiday. The staff was able to make that happen.

“As it turned out, the patient died on the fourth, following a day of celebration—but the important thing is, she was not here at the hospital,” Krista shares, “It made a world of difference to the family. When we help make those things happen, the family maintains more stability.”

Coordinated palliative care is not only a gift for the patients and their families, but for hospital staff as well. Speaking for all the physicians and nurses in the NICU, Jean Kelleher, nurse manager, says it’s been great to have the supportive involvement from chaplains and child life specialists and others in the palliative care program.

“It’s just too hard for a nurse in the NICU to take care of all the immediate medical needs and still have the time to be there emotionally for the family,” she says. “We are very grateful.”

Beyond our walls
In 2005, Sacred Heart received a Lance Armstrong Foundation grant to teach health care providers—here at the Children’s Hospital and across the region—about serving families who have children with life-threatening illnesses. (See “It takes money.”)

“The basic premise is the fact that we see children with chronic illness from all over the region. They are in and out of the hospital and they’re going to need care in their own communities,” explains Krista, who coordinates the outreach program. “The grant allowed us to network with other care providers, plus develop a structure for palliative care throughout the Children’s Hospital, too.” Forget-me-nots

Jean explains, “When all the steps are in place, you won’t just get supportive care when you’re here, but you’ll have seamless transition between service in the hospital and in the community, too. We don’t want each agency you visit to re-ask the same questions like they’re starting from scratch.”

She continues, “When you take your child back home, your local clinics will have the information they need. And if you have to return to the hospital, we’ll pick up where they left off.”

“Life’s journey is just not prone to accept children and babies dying,” says Jean, “so we are committed to making that road a little easier for parents to walk.”