“Beads of Courage” Inspires Many Families

Families who have a baby being cared for in a Neonatal Intensive Care Unit (NICU) typically spend a lot of time in the hospital – an average of 24 days at American Family Children’s Hospital.

Typically, there are many steps along the journey of care before a baby is healthy enough to go home or return to the local NICU to feed and grow. Understandably, the days and nights often become a blur, making it hard for families to remember each stop along the journey of care.

About 15 years ago, a pediatric oncology nurse in Arizona had a brilliant idea – why not tell the story of a child’s care through a strand of beads? Each time a blood transfusion is given, for example, a red bead is added to the strand. Perhaps an ultrasound or X‐ray is noted by a green bead. Chemotherapy infusions might be shown by a certain shape of bead.

Beads of Courage® began to grow in popularity across the nation. Through the Beads of Courage Program, children receive colorful beads that symbolize each step of their treatment journey. The beads they receive provide a powerful dose of narrative medicine that visually translates their treatment experience and helps them cope with the many uncertainties of their treatment joyrney. Thanks to a generous gift from Angela and Tony Steinhauer of Cottage Grove, American Family Children’s Hospital launched its own Beads of Courage program this past April for families with a baby hospitalized in the NICU or with a child having heart surgery. (AFCH’s childhood cancer unit already has a similar program called “Hero Beads” funded by the Badger Childhood Cancer Network.)

“I think of Beads of Courage as a physical representation of a child’s medical chart,” says Angela. “When you see families with 50, 100 or even several hundred beads, you know right away how much that family has been through, and it gives them a lifelong remembrance.”

Almost five years ago, the Steinhauers’ second child, Asher, passed away after complications from a congenital heart defect that was diagnosed when Angela was 20 weeks pregnant. Asher was born at full term, but he ultimately lost his battle for survival after 24 days.

“Even though his life was so short, we couldn’t think of a better way to honor his legacy than by bringing Beads of Courage to American Family Children’s Hospital,” says Angela, noting that patient families from the NICU and pediatric heart program now receive a strand of beads.

To sustain the program, the Steinhauers hold an annual fundraising event at the Varsity Bar & Grill in Sun Prairie, Wisconsin that donates a portion of its sales for the day. A live auction is also held. (This year’s event will be held February 15, 2020.)

For the Steinhauers, who have three other children — Elijah, 7; Josiah, 3; and Ruth, 2 — launching Beads of Courage has helped them cope with Asher’s loss.

“Asher fought so hard, and while you never fully get over losing a child, we are thrilled to see how excited the NICU staff is. It is a great way to honor our son’s legacy, and I think somewhere, Asher knows that his short life was the inspiration of a gift that will never
stop giving.”

American Family Children’s Hospital is proud to provide the BEADS OF COURAGE® Program in our NICU.  The mission of BEADS OF COURAGE is to provide innovative Arts-in-Medicine programs that improve the quality of life of children coping with cancer and other serious illnesses. BEADS OF COURAGE® is a federally registered trademark of Beads of Courage, Inc., and is used under license.