Alyia D'Ambrosio, age 5, tied a rubber tourniquet on her patient's arm and searched for a vein.
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She inserted a needle for an IV — a real needle — into Chip, a cloth doll bigger than she is. Then she carefully cleaned the tip of a plastic tube with alcohol before adding a drug “for his heart infection.” She knew it might not work.
“I'm going to do what I can,” said Alyia, who has endured a dozen grueling operations to open intestines that were blocked at birth and have been cut to a fraction of their normal length.
Babies with her condition rarely live past infancy. Her prognosis — even her next surgery — is unknown.
“She was trying to figure out how to fix his ‘heart' condition. She's not sure how the doctors are going to deal with hers,” said Hilary Phillips, a child life specialist at Children's Hospital of Philadelphia, after Alyia's half hour of “medical play.”
About 35 staffers help patients conduct such play at Children's Hospital. The program is one of more than 400 similar efforts in the United States and Canada, according to the American Academy of Pediatrics.
The idea is to lessen the terror that kids may feel before a scary procedure. Research shows that structured play can reduce stress.
“Play is a child's work,” said Elana Tenhuisen, child life director at Children's Hospital. “That's how they learn about the world that they're involved in.”
Kids make puppets out of tongue depressors. They play a version of bingo in which O stands for nurses and N is for X-ray. They put bandages on dolls and wear sterile “bunny suits” before an operation, just like the surgeons do. A 1998 study of 100 hospitalized preschoolers found that blood pressure and pulse rates were lower in children who participated in individualized puppet shows about their coming surgeries. The mothers also reported that those children had less anxiety after surgery than the control group.
In the short term, specialists say that working with a petrified child before a minor procedure can help avoid sedation.
For kids who are hospitalized over long periods, guided play can promote natural growth and development, and make their world a little more normal.
A lot of play is largely undirected (although closely observed). Give a doll and a box full of medical paraphernalia to a 6-year-old diabetic who is continually getting pricked, and the child will likely make up a story line in which he is the doctor and the doll has diabetes.
“The point is familiarity and control and mastery,” said Tenhuisen. “That they have the opportunity to overcome and figure it out on their own.”
The theory works at about any age.
“I'll show a 2-year-old the anesthesia mask before they go in, so they can feel it and play with it,” said Candy Nyce, director of the Department of Child Life at St. Christopher's Hospital for Children, which, like Children's Hospital, has had a formal program for more than 50 years.
For a dying child, the staff may provide guidance for a scrapbook or video, she said, “helping them build memories.”
She always tells the truth about what's coming. “Kids usually think it's a lot worse than the reality,” said Nyce.
Over the last two decades, “child life” has become the widely accepted, if still obscure, term for a group of certified specialists trained in psychology, child development, recreational therapy and other fields. The name reflects the multidisciplinary approach and also concerns by those in the profession that their gender (overwhelmingly female), subject (play), and predecessors (some of this was done by volunteers) caused them not to be taken seriously. They were often called “play ladies.”
At Children's Hospital of Philadelphia, Tenhuisen oversees a combined Department of Child Life, Education and Creative Arts Therapy, one of the largest in the country. Most of its funding is donated.
Among the full-time staff are teachers (long-term patients can graduate from high school here), librarians (a library is open to patients and families), and a video specialist (patients help produce weekly videos for children in the hospital). There are no clowns (too scary).
The common thread: lack of pain. “We're the safe people in the hospital, not poking and prodding,” said Tenhuisen.
Alyia D'Ambrosio, the little girl with bright black eyes, chipmunk cheeks, and intestines that are solid where they should be open, went home with her parents to Williamstown, Gloucester County, 11 days ago after living for more than seven months on a surgical unit floor.
Play sessions once or twice a week made the six surgeries, constant tests, multiple X-rays, and weekly catheter cleanings almost bearable.
Usually the child care specialist would lead her to a small playroom filled with board games, books and videos; a tray overflowing with gauze, Band-Aids, tubes, surgical caps and stethoscopes; and cloth dolls, some large and anatomically correct, others small and faceless.
They would talk about her latest experience in the world of medicine. Then Alyia would don a purple surgical cap and begin to play.
On one of those days, Chip had a heart infection. The diagnosis allowed her to bandage his old scars, insert an IV, tape it up with gauze padding to prevent a leak, add medicine to put him to sleep and more to wake him up, and draw blood for the lab “to see if he needs surgery” — all of which had happened to her.
She tugged at a Velcro opening and pointed inside, where Alyia said liquid was moving near Chip's heart.
“He can't breathe.”
Besides working with her on medical play, Hilary Phillips would often help prepare her for surgeries and act as an all-around advocate.
“When there is going to be a procedure,” said her mother, Linda D'Ambrosio, “Alyia will say: ‘Hilary's going to take me! Call Hilary!'”
A week before she was released, an unexpected intestinal bleed sent the girl to the operating room.
“They paged Hilary,” her mother recalled the other day, “and they actually waited. Hilary came running, so that was great.”
The child care specialist caught up with the little girl in the pre-op area, she said, then they both got into bunny suits and went into the OR together.w