CINCINNATI (AP) — Ashlee Griffith Rison, who turns 3 on Friday, has spent all but the first minutes of her life at Cincinnati Children’s Hospital Medical Center.
She’s fed through a tube. A tracheostomy and ventilator help her breathe. Her mother, Tiffany Griffith, has lost count of the surgeries her only child has endured since she was born with spina bifida, a birth defect in which the bones of the spine don’t form properly around the spinal cord.
Griffith stayed by her daughter’s side for much of her first eight months of life. ‘‘But I have bills,’’ says the Newport, Ky., resident, who is a waitress. ‘‘I had to go back to work. So I can’t be there all the time.
‘‘I would like somebody to be there, holding her, playing with her.’’
Somebody is there. This afternoon, it’s 23-year-old Jill Van Stright, one of three staffers — called fellows — in the Josh Cares program, a nonprofit charity that operates out of the hospital’s Child Life department.
Josh Cares began in 2005 and is the only program of its kind in the country, says Sharon McLeod, the hospital’s Child Life director. Its mission: provide companionship and comfort to children in intensive care who are often alone.
So here’s Van Stright, a recent graduate of Calvin College in Grand Rapids, Mich., approaching a little girl’s hospital crib with a big smile and a playful voice.
‘‘Whatcha doin’ Ashlee? Can I see you? Ashleeeee.’’
The sandy-haired girl, dressed all in pink and sporting two pig tails, doesn’t talk much, but her blue eyes say she’s happy to have company.
On any given day, Van Stright and the other Josh Cares fellows, Cara Calderon and Katrina Baliva, might collectively visit a dozen or more patients ranging from newborns to young adults.
Their duties are similar to those of about 40 child-life specialists at Children’s: They rock and cuddle children, play with and read to them. They explain medical processes and accompany kids to painful procedures.
The key differences: The fellows work with children whose parents can’t be there, and ‘‘the time they can devote to individual patients is much greater,’’ which allows them to build supportive relationships, McLeod says.
The full-time fellows are required to complete a child-life internship at a pediatric hospital before joining Josh Cares. They must also have a college degree in child-life, psychology or a similar discipline.
When she arrived here a year ago, Baliva, 25, from Syracuse, N.Y., was assigned to the hospital’s Regional Center for Neonatal Intensive Care. She began seeing a 7-month-old boy whose wound dressings had to be changed several times a day. Each time, he needed morphine to cope with the pain.
Baliva made it a point to be with him for the procedures. She talked to or sang to him, held his hand, rubbed his head. Eventually, the morphine wasn’t necessary.
‘‘Even the smallest babies learn right away who they can trust and who they can’t,’’ she says. ‘‘They know your voice. They know you’re not there to hurt them.’’
Calderon, who is 22 and from Chicago, says school-age children often want someone to explain what’s happening to their bodies. Teens, worried about how an illness will affect their social life, might require emotional support.
And all patients, regardless of age, need to stay connected to their families. To that end, the fellows make phone calls, write notes, send e-mails and mail photos. They sometimes make videos. When parents do visit, they find books the fellows created that contain photos and notes describing the child’s daily activities.
Some parents can’t be with their hospitalized children because they live far from Cincinnati. More often, a single parent lives nearby but has limited time available because of work and child-care obligations.
Crystal Spencer is a 27-year-old single mother from Dayton. The youngest of her four children, 20-month-old Preston, has been at Cincinnati Children’s since birth, with a rare abdominal/digestive condition.
Calderon and Van Stright regularly spend time with him.
‘‘They’re angels,’’ Spencer says. ‘‘I can lay my head down at night knowing there was an individual in my son’s room who gave him the love and care that he needed that day.’’
‘‘I have so many people tell me, ’I want your job,’’’ Baliva says.
But some days, it’s a job no one wants.
Before arriving here, Calderon interned at a suburban Chicago hospital where her patients included a 13-year-old girl with a congenital heart defect. Her death was sudden and unexpected.
‘‘Tons of family rushed to the hospital,’’ she says. ‘‘The room was crowded and hot and uncomfortable. People were very unstable, just reaching out for anyone who could help them.’’
The family ‘‘just wanted someone who could be with them and listen. So we sat there and everyone cried and looked at pictures.’’
Last May, during Van Stright’s orientation week at Children’s, two patients died.
‘‘It was a shock,’’ she says. She now knows there are many more good days than bad.
One of those good days was Oct. 19, when Preston received a bowel, liver and pancreas transplant.
That morning before surgery, Van Stright played with him until his mother arrived. Spencer then asked Van Stright to stay with her until the surgery started.
Preston remains in the hospital, and is showing some signs of rejecting his new organs. But his mother says doctors are hopeful he will recover.
Now back in Dayton, where her other three children need her, Spencer says she’s grateful for the Josh Cares fellows.
‘‘As a mom ... your biggest fear is to leave your baby by himself. To know that I can walk out of the room and my son has somebody else in there with him, I can’t put into words how that feels.’’
