‘Life specialists’ help young patients cope with illness

Jade Tukan is an inquisitive 2-year-old with bright eyes and a confident smile, but her life was terribly disrupted when she was given a diagnosis of a deadly cancer, acute myeloid leukemia, in January. As her family focused on her medical care, it was sometimes hard to remember that Jade still wanted to play, even while hooked up to a chemotherapy drip.

That’s where Liz Anderson came in.

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Anderson is one of 16 child life specialists at Children’s National Medical Center. “The purpose of my job is to make the hospital as least traumatic and stressful as possible,” she explains.

Anderson, 24, does not provide direct medical care. Instead, she helps Jade remain a kid despite all of the extraordinary things happening to her, often by guiding her in play, which is “the basis of how a child learns and grows,” Anderson says.

Jade’s mother, Taneika Tukan, said she couldn’t imagine how the family would have gotten through Jade’s treatment without the hospital’s child life specialists.

“When we first got the diagnosis, everything stood still,” Tukan says. Doctors gave the little girl just a 50 percent chance of survival. “We were really trying to cherish every moment we had with Jade, but there was a lot of sadness we were experiencing.”

Anderson visited with the family almost daily, bringing toys and books when Jade was in isolation, explaining the medical care to Jade in child-friendly language and even helping her older brother express his feelings about Jade’s illness. “Whenever Jade was going through a particular funk or was a little drained from a treatment, we could ask the nurse to call Liz, and she would show up with something that would cheer her up,” Taneika Tukan recalls.

An expanding field

There are more than 4,000 child life specialists across the country. Every pediatric hospital in the country has a child life program, according to the Children’s Hospital Association, as do many general hospitals with large pediatrics units.

The specialists must have a college degree, with classes in child development, psychology and similar subjects. They must also complete an internship of at least 12 weeks.

Dennis Reynolds, executive director of the Child Life Council, a Rockville-based professional organization for the specialists, says the number of people seeking certification is outpacing the number of available jobs. But he adds that he expects the field to grow as general hospitals and even dental offices and clinics add child life specialists to their staffs.

Child life specialists usually earn $40,000 to $60,000 a year. Their services are not reimbursed by insurers. Instead, the cost is part of the hospital’s overhead, like electricity or maintenance. Children’s spends about $800,000 a year on its program.

That expense is “greatly worth it,” says Mark Wietecha, president and chief executive of the Children’s Hospital Association. “It’s really almost an insignificant amount of money . . . to let the sickest kids have some opportunity to a life and be reassimilated.”

The programs have been so successful that many children’s hospitals are expanding them into outpatient units to help patients undergoing tests and procedures such as MRI scans and tonsillectomies.