12:55 PM PDT, June 13, 2013
In photographs, Megan Webber’s 5-year-old son Benjamin had a white glow on one eye where other people have that little red dot. It didn’t seem important at first, then her sister remembered seeing a TV show about the glow and eye disease.
Webber, of Pacific Palisades, and her husband Brian took Benjamin to a pediatric ophthalmologist, who found a mass in the eye. He told them it might be retinoblastoma, an eye cancer that can be fatal.
“That’s when your world starts to fall apart,” said Webber, who 2-1/2 years later can still choke up remembering that day.
The Webbers were rushed to the Vision Center at Children’s Hospital Los Angeles, where they expected the usual hospital experience — a long, anxious time in waiting room limbo. But when they arrived, two renowned ophthalmologists, Dr. A. Linn Murphree and Dr. Thomas C. Lee, were waiting for them.
After they examined Benjamin, a cheerful nurse kept him entertained in a special play area while his parents spoke to the doctors. They mentioned another possible diagnosis, Coats’ Disease. It was not potentially fatal like retinoblastoma but could cause blindness. After surgery they would have a diagnosis.
During the four days before the operation, Murphree and Lee did something else the Webbers found extraordinary — they phoned the family at home several times just to offer support.
The diagnosis was Coats’ Disease and Benjamin has undergone two more surgeries. Through it all, a hospital team has helped the family cope with everything from the emotional to the practical. Benjamin is now 8 and doing so well that he recently went on a family ski trip.
The Webbers’ experience represents a remarkable evolution in children’s hospitals, one that many parents, facing one of life’s most frightening ordeals, have been grateful to discover.
A family-centered approach
This new breed of children’s hospitals — including Children’s Hospital Los Angeles, Mattel Children’s Hospital UCLA and Children’s Hospital of Orange County — are dedicated to a unique style of family-centered care. The first thing you notice when you walk through the doors is the child-friendly décor — bright colors, little chairs and tables, cheery play areas. And it’s more than just window dressing. Top physicians in many disciplines, nurses, pediatric psychologists and Child Life specialists all work as a team, with great sensitivity to the emotional needs of patients, their parents and siblings.
As Dr. Sherin Devaskar, physician-in-chief at Mattel Children's Hospital UCLA, put it: “It’s a huge privilege that families have bestowed upon us. This is not an easy period in their lives, so we try very hard to be there for them.”
Key to caring for kids is ensuring that their time at the hospital is as normal as possible, with play areas, books and activities for all ages from toddlers to teens. “We even have a prom for teenage oncology patients, who often miss out on a lot of social opportunities,” said Debbie DeLeese, a child care specialist at Children’s Hospital of Orange County, or CHOC.
And parents no longer have to leave their children alone overnight in a strange place. Hospital room furniture converts to beds and there are private showers, even WiFi.
CHOC is a home away from home for Cindy Jenkinson. Her daughter Courtney was born with cerebral palsy and has spent more than 300 days in the hospital — with one of her parents always at her side.
Jenkinson also appreciates being included in the decision-making process. She’ll never forget her astonishment the first time a doctor at CHOC asked for her input, considered it carefully, then made a significant change to his care plan based on her ideas.
'What’s wrong with me? What’s going to happen?'
Even with toys, games and plenty of caring attention, kids can still worry: What’s wrong with me? What’s going to happen?
Child Life specialists, a key part of the team, are certified professionals trained to help children and their families through this difficult experience. They focus on making a child’s hospital life seem as normal as possible. To facilitate this, there are play areas, books and activities for all ages from toddlers to teens. “We even have a prom for teenage oncology patients, who often miss out on a lot of social opportunities,” said Debbie DeLeese a Child Care specialist at CHOC.
The “Get Well Network” at Children’s Hospital Los Angeles is a bedside touch-screen system located next to every bed in the hospital and customized for each child so they can learn what to expect during their hospital stay. The hospital’s Literally Healing Program includes a therapeutic library with books that can explain medical conditions to children and help them through difficult experiences — books like “Humpty Dumpty Faces the Future,” for children who have suffered disfiguration, and “Kathy’s Hats: A Story of Hope,” which helps kids deal with hair loss from chemotherapy.
Psychologists are part of the team, too, and help young patients and their families cope with anxiety and depression. For children suffering pain, a range of child-friendly techniques like guided imagery and meditation have proven very effective.
“Kids are amazingly resilient,” said Heather Huszti a pediatric psychiatrist at CHOC, “so we have a lot of success stories.”
—Maxine Nunes, Brand Publishing Writer