Imagine every IV poke, every bandage, every surgery … reduced to a colorful but hard-earned glass bead that a sick or injured child can string and wear with honor. Just like medals and ribbons, beads have been used throughout history to show bravery and accomplishment and at Johns Hopkins All Children’s Hospital, beads represent treatments for cancer, cardiac issues, cystic fibrosis, and soon, treatments for babies in the Neonatal Intensive Care Unit (NICU).
“Kids need something tangible. The beads are a positive, visual way for kids to explain and share the personal journey of their illness,” explains Kristin Maier, director of the hospital’s Child Life program. “Kids earn a unique bead for each procedure and milestone they go through. The red bead represents a blood transfusion. The brown bead is for hair loss... The beads are a great way for our nurses to connect more thoroughly with patients and families, and they even receive special training on how and when to distribute the beads.” Maier believes strongly in the program because she sees the results every day not only with patients, but their families.
“The beads don’t mean anything yet to Beckham,” explains mom, Amanda of her newborn. Beckham spent his first 70 days in the Johns Hopkins All Children’s NICU after being born with a congenital diaphragmatic hernia (CDH), which could have taken his life. The family travelled from Indiana for the birth and several surgeries after being told he likely wouldn’t survive CDH in his hometown. Beckham not only survived, but he has earned well over 500 beads through his long medical journey. “Right now he has no reference,” Amanda explains, “but some day Beckham will ask me about his scars and I will have the beads. Each bead will tell a story. He got one for each surgery, each scan, every night he spent in the hospital. Some days, when it was really, really rough, he would earn eight to 10 beads a day. Now we have a way to explain to him what he went through to survive.”
The Child Life team told Beckham’s family about the program before his birth so they would know to start collecting beads right away. “They explained it all to me and said the kids love being able to see them, count them and have a better understanding of what they’ve been through,” Amanda explains, “even if they were too young to remember it all happen.”
Give Day Tampa Bay Challenge
Johns Hopkins All Children’s will participate in Give Day Tampa Bay
, the 24-hour giving challenge on May 2nd, with funds going towards the Beads of Courage Program in the NICU. The program has transformed the treatment experience for children and families coping with chronic, life-threatening illness for 11 years. The community is encouraged to join this giving challenge
to help other families share the story of their infant’s journey in the NICU.
“People see programs like Beads of Courage as being fun for the kids …and they are,” Maier says. “But it’s so much more than that.” The beads are a therapeutic way for kids to take control of what is happening to them. The beads are all different and each one represents something the child went through. Kids with major illnesses earn each and every bead, and it gives them some empowerment over their situation. It can put a light at the end of the tunnel as they see their beads accumulating.
Learn more about the Johns Hopkins All Children’s Foundation.