Being There to Care

Josh Helfrich was a compassionate 10-year-old whose life was cut short by a terrible accident in 2004. His family co-founded Josh Cares to provide companionship and comfort to hospitalized children whose families can’t be with them.

Josh Helfrich always looked out for other kids. If they were sad, Josh would try to make them laugh. If they were scared, he’d try to comfort them.

Ann Helfrich, Josh’s mom, remembers one day in particular. Josh came running in after school to ask if a girl from his bus could stay with them until her mom got home. “She was scared to stay by herself, and Josh didn’t want her to be alone,” Ann says.

Tragically, Josh lost his life after being struck by a car in 2004. He was only 10 years old.

“While we were at the hospital, we were really blessed by the support of family and friends. And we were blessed to be able to be with our child at that time,” Ann says.

This isn’t the case for everyone. On any given day at Cincinnati Children’s, an average of 25 critically or chronically ill children are alone in the hospital. As much as parents want to be with their child, sometimes they just can’t.

This heartbreaking realization did not go unnoticed by the Helfrich family or their close friends Dan and Lynn Pierce. “Josh knew every day of his life that he was loved and cherished. We believe all children should feel this way,” Ann says.

Out of this belief, Josh Cares was born. Josh Cares is a non-profit organization dedicated to ensuring that no critically or chronically ill child goes through a hospitalization alone. The only program of its kind worldwide, Josh Cares funds professionally trained Child Life fellows at Cincinnati Children’s to provide companionship and comfort to hospitalized children and support for parents, who would be by their child’s side if they could.

“We didn’t want to buy toys and gadgets for these kids. We wanted to buy the time of professionals who could provide comfort and alleviate fears,” Dan explains.

An Extended Family

The reasons the children are alone are as varied and complex as their medical conditions.

“Most people find a way to be with their hospitalized child and the rest of the pieces of their life fall into place somehow,” says Joy Rowe Blang, director of development for Josh Cares. “For the Josh Cares families, this doesn’t happen.”

Many are single parents with other children and no support from family or friends. Many have to work to pay bills and keep their insurance. Still others have no transportation, live out of town, are in the military or may be hospitalized themselves.

“Ultimately, it doesn’t really matter what the reason is for the parent’s absence. They are children and they need us. Our fellows will be there for the child and the parents,” Joy says.

The Josh Cares fellowship program is part of the Division of Child Life at Cincinnati Children’s, the largest Child Life program in the world. The Josh Cares program began in 2005 with two fellows hired and trained by Cincinnati Children’s. Fellows have a bachelor’s degree in education, psychology or a related discipline and have completed an internship at a pediatric hospital. This year, the program expanded to five fellows at the medical center. The organization is working on developing a model for other cities to adopt and establish a similar program of their own.

“Josh viewed the world by how he could help it, and Josh Cares is so in keeping with my son’s memory, with who he was,” Ann says. “It started as a way to honor one boy and it has already helped so many kids. It is beautiful to me that it’s transitioned to that.”

A Bridge to Complex Care

The Josh Cares fellows are Child Life specialists specially trained to meet the complex medical and emotional needs of critically ill children.

“We go with them to all their procedures and stay with them so they aren’t afraid – maximize the normal, minimize the stress,” says Becky Coffman, CCLS, a Josh Cares fellow. “We really get to know the kids, so we can help the nurses and other staff if questions arise. We do what the family would do if they could be here.”

The average hospital stay of a child in the Josh Cares program is three weeks, but some are hospitalized for months or even years. Others return to Cincinnati Children’s frequently to manage a chronic illness.

Michelle is one of those patients. At 4, Michelle has spent most of her life at Cincinnati Children’s due to VATER syndrome, a complex condition that affects multiple body systems. Michelle had a multi-organ transplant at age 2, five additional surgeries to repair her bowels, and she will need another surgery soon on her bladder.

“Michelle has been in and out of the hospital since she was born,” says her mother, Stephanie. “We never have a short stay. It’s usually months at a time.”

The family lives in Dayton and Stephanie has to work during the week. The distance and stress of leaving her daughter takes its toll, and Stephanie is grateful for the Josh Cares fellows.

“Michelle’s condition is very complex and it’s always in the back of my mind whether something is going to happen. I don’t trust many people to care for her,” Stephanie says. “I trust the fellows, though. They really care and they understand her medical needs. It puts my mind at ease that they’re with Michelle when I can’t be there.”

Comfort for Kids and Parents

The hospital can be a stressful place for anyone, especially children. Research has shown that stress can be a major inhibitor to the ability of a patient to heal and stay healthy. And children experiencing traumatic events without the support of family may suffer damaging long-term social, emotional and developmental effects.

Whitney Groth, CCLS, CIMI, is a Josh Cares fellow dedicated to the Visit the Regional Center for Newborn Intensive Care., the referral center for our region’s most fragile infants.

“I spend a lot of time holding, rocking and talking to the babies to create the warm, comforting feeling an infant needs to feel secure ,” Whitney says.

One of Whitney’s patients, Bailey, now 6 months, has been at Cincinnati Children’s since he was 1 day old. Born with a bowel obstruction, Bailey has had several surgeries and countless procedures. His mother, Rachel, has three other children at home, ages 2, 3 and 5, and she doesn’t drive. His father works second shift, so it’s difficult for his parents to get to the medical center regularly.

Whitney fills the gap. She takes Bailey to the playroom every morning to work on developmental milestones. They have tummy time and work on skills like grasping objects or sitting upright with support. “These are all fun and playful things he would do at home…normal learning for babies,” Whitney says. “He recently rolled over from his tummy to his back. That was cause for a big celebration.”

And Whitney makes sure these milestones aren’t lost to Bailey’s parents. She and the other four Josh Cares fellows create “All About Me” scrapbooks filled with pictures to share with moms and dads.

“The pictures and little stuff they do are so great. I can see what Bailey is doing and how he’s progressing,” Rachel says.

Bailey is also forming emotional bonds that will be important for his self-esteem, self-control and the ability to learn and achieve optimum mental and physical health – bonds that may be compromised without the tender care of his Josh Cares fellow.

“Bailey and children like him can begin to associate human touch with pain if the only time they feel human touch is during painful procedures or needle sticks. We make sure that if something painful happens, there is positive, comforting support. It is important for healthy emotional attachments and a solid foundation,” Whitney says.

Rachel is glad to know that Bailey has a familiar face and comforting arms to count on.

“Bailey gets to experience all the love and caring that I wish I could be giving him, but can’t,” Rachel says. “I can’t express how much that means.”

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