Madison Ocasio’s cries echoed through the pediatric unit at Florida Hospital East, drowning out the sound of Hannah Montana playing from a metallic blue radio. As the 6-year-old screamed, terrified of the doctor preparing to take a sample of her blood, Child Life Specialist Kelli Grandinett blew bubbles. Madison’s cries subsided.
She smiled, reaching for the bubbles popping around her and the doctors nearby. “Bubbles work every time,” Grandinett said. Madison and her mother, Becky Ocasio, rushed to the hospital last Sunday evening when her flu-like symptoms worsened. Five days later she was still being treated for pneumonia and the mother-daughter pair was growing increasingly stir-crazy. “Being cooped up in this room together we get frustrated with each other,” Ocasio said. “It helps with Kelli here talking to her, bringing her games.
Madie is reacting better than I thought she would — she is our feisty child.” New hospital arrivals are often clueless about child life specialists until Grandinett arrives with games to distract a child from their pain, a coffee break for the parent, and shorter visits to the treatment room because of the coping skills and education Grandinett provides the children. “I tell the kids I am not a doctor, I do not do owies.
My job is to support, care and distract,” she said. “The hospital can be very uncomfortable and stressful for kids. Everyone is poking them and pinching them. My job is to minimize that stress on them and their family.” When Madison refused to take her medicine, Grandinett coaxed her with her favorite soft drink. When she was stuck in her bed, Grandinett let her paint half of her fingernails purple and the other half pink/yellow. And when she was afraid to get an IV, Grandinett showed her how it worked on a doll.
“The child life specialist changed the pediatric field entirely,” said Sheri Mosely, board member for Child Life Council, which represents all 3,000 certified child life specialists nationwide. Child life specialists first appeared in the form of hospital volunteers and “play ladies” in the 1920s as an answer to the alarmingly high infant-mortality rate. Mosely said they needed a more loving, colorful environment that the busy nursing and physician staff could not provide alone. By the 1980s child life specialists became mainstream and in 1982 the Child Life Council, which accredits all U.S. specialists, was incorporated as a nonprofit organization.
Today all major children hospitals and most hospitals with 10 or more beds dedicated to pediatrics have child life specialists on staff. “Child life specialists have come to be an expectation by society even though people do not always know what to call it,” Mosely said. “They expect more than the medical stuff. We want our children to have places to play when they are stuck in the hospital and for people to spend time with them.” Grandinett’s older brother was diagnosed with leukemia when she was 2 years old. Shortly after, her mother was diagnosed with Hodgkin’s lymphoma.
She spent about four years of her childhood visiting her family in the hospital. While she cannot remember her name or what she looks like, she will never forget the hospital’s “play lady.” “I cannot remember anything but getting really excited when she would come into the waiting room. She always had some arts and crafts for us to do. I still have this tin tray I made with her that has a collage of magazine clippings glued to the top,” she said. Grandinett’s brother went into remission by the time she entered first grade and her mother recovered from a bone marrow transplant around the same time.
Still, years later, when Grandinett was deciding her career path she remembered the play lady. She has worked as a child life specialist for five years — two at Florida Hospital East. Grandinett works with children from infants to 17-year-olds who fill the 14 beds in the pediatric unit and fields questions about how much a needle prick will hurt, whether they will wake up during surgery or at all, and how much school will be missed.
Many of the kids, especially those ages 3 to 5 who are most likely to be developmentally affected by a poor hospital experience, need pretreatment education and preparation. “Some kids have high anxiety with medical equipment. We let them feel it, use it and play with it to make them see these things as non-threatening,” she said.
Syringe painting (filling an empty syringe with paint) and Me Dolls (special dolls that help children understand how medical procedures work) are generally used with young children. Older children like Annette Ramos, 14, who had pneumonia and a fear of needles, need Grandinett to walk them through what they will experience during exams, surgery and other procedures. Annette said it helped knowing what to expect.
“They brought her Sudoku game cube (Annette’s favorite), and decorated her room before we got here. I do not think she wants to leave,” said her mother, Mayra Ramos. “When you are sick, people tend to treat you like a sick person. It is not like that here.”
Don’t say ‘dead’
Grandinett‘s mornings are filled with bubbles, high fives and pinkie swears, but there is an unpleasant side to the child life specialist’s role. In the afternoon, Grandinett works at the east campus emergency department, educating and distracting kids in the waiting room, and making sure they are receiving proper pain management.
There is not as much time for play, but Grandinett said it is possible for a child to have a positive experience in the ED. “In the ED it is either feast or famine so you never know how much time you will have with one child, but we do not want them to make bad memories there,” she said. Bereavement is the toughest part of Grandinett’s job.
A few times a year she is called to talk to a child whose sibling or parent is dying. “Fortunately we do not have to deal with that too often here,” she said. “It is about being honest, answering their questions, and not skirting the issue.” Phrases like passed away, joining grandma in heaven, or even the term “dead” are not in Grandinett’s vocabulary because they can be confusing. Instead, she explains death.
“When one child lost their sibling, I explained, ‘That part of your brother that allowed him to ride bikes with you, laugh and talk is not working anymore,’” she said. “Parents try to skirt the issue or keep the children away because they think it is best, but it is not. They have to be there for closure and so they can understand.” Grandinett also helps adults when a child dies.
A child life specialist will offer a lock of hair, a memory box, or hand and footprints as keepsakes for the grieving parent. Once, a parent asked Grandinett to help bathe and dress the deceased child. “We let parents do what they need to do,” she said. “We know that we do can make a difference in that horrible and intense time for them. That’s what makes it worth it.”
