Presby child specialist receives Olympic treasure

Rebecca Brooks, a child life specialist at Presbyterian-Hemby Children’s Hospital, has received a U.S. Olympic Bead of Courage – one of only 56 in the world.

The red, white and blue glass bead worn by an U.S. Olympian athlete this past summer, was presented Tuesday at the hospital by the south Charlotte father of a 6-year-old son who died in February.

Glen Stephens, 42, who lives off south Carmel Road, had nominated the caregiver, and called Brooks’ achievements “above the call of duty” and thanked her for helping to make his son’s short life “as full as we could possibly make it.”

The presentation came after months of work nominating Brooks. Glen and his wife, Emily, with the children’s hospital planned a surprise reception for Brooks, a longtime caregiver of Gabriel Stephens. Both Brooks and the Stephen family were interviewed before the ceremony. (South Charlotte News published prior to the presentation.)

The global Beads of Courage program, an incentive for hospital patients and staff is only used locally at Presbyterian Hospital in uptown Charlotte.

The hospital joined the program in March 2011. Children who participate in the program receive colored beads that represent milestones, procedures and acts of bravery.

For instance, they get a yellow bead for an overnight hospital stay, a white one for chemotherapy, black bead for every needle stick and a glow-in-the-dark bead for radiation treatment.

It’s not uncommon for children to amass 10 to 35 feet of beads. It helps young patients track and celebrate their progress, but it also gives them a way to get through upcoming procedures, said Brooks, a 29-year-old mother of a newborn.

“There are days that are hard,” said Brooks, who lives in Ballantyne. “It doesn’t always go with what we expect of life’s natural flow. Children can get sick. Children can die. And parents are lost.

“Beads of Courage has been such an amazing addition. Our youngest patients in the NICU (Neonatal Intensive Care Unit) may not fully understand it, of course, but our young patients are so brave and so tough. It gives them a visual reminder to remember their time here – in a powerful way.”

While caregivers like Brooks receive beads during their training to become a child life specialist, it is rare for a staff member to receive a commemorative Olympic bead, along with a matching bead that goes posthumously to Gabriel, the Stephens’ only child.

Child life specialists help patients and families to cope with procedures and diagnoses.

“We do that using education, therapeutic intervention and play, child developmental skills and a child’s ability to play,” she said. “I start IVs on dolls and teddy bears, coordinate activities in the outdoor playroom, the children’s movie theatre, the teen room. While the education comes from physicians and nurses who know the case, I’m there to help parents and patients, siblings and grandparents understand what is going on and prepare them, showing them medical equipment if necessary or reading a book about what will happen.”

Her affiliation with the Stephens family and their son, Gabriel, dates back to his infancy and his severe development delays. When Gabriel was 14 months, the diagnosis was made: Aicardi-Goutieres Syndrome at a severe level. AGS is a genetic disorder that mainly affects the brain, the immune system and the skin. In Gabriel’s case, his immune system did not function properly. A CAT scan revealed that one of two components of his body’s nervous system was seriously depleted.

“We chose therapy – physical therapy, occupational therapy, speech therapy – as much as Medicaid allowed,” said Glen. “We did everything with him from taking him to the park to see Santa Claus to having him join the art group when he was hospitalized even though it might be just a scribble.”

The family visited Disney World. Make-A-Wish Foundation painted Gabriel’s bedroom/therapy room with cheerful safari animals. And Gleninstalled a disco ball and strung white and colorful lights along his son’s ceiling.

Throughout his 17 hospitalizations, Glen and his wife logged every procedure into Gabriel’s bead journal. They strung the beads and kept them in a special bead bag. And they looked to Brooks for “unconditional” support, says the couple.

Nine days after Gabriel turned 6, he suffered a seizure because of influenza and was hospitalized. He lapsed into a coma, had to be ventilated and his kidneys began to fail.

“His lungs could not support him and to try dialysis with his very low blood pressure would have been cruel and unusual,” said Glen. “So they positioned his body and Emily and I took turns laying down beside him and saying our goodbyes.”

Gabriel died Feb. 4, his beads measured 4 feet long. His last bead was a large colorful butterfly bead, meaning a child “has gone home.”

When nominating Brooks for the Olympian bead, Gabriel’s parents sent the nomination from their son’s point of view, telling judges in a letter that: “Miss Rebecca goes above and beyond for the children of Presbyterian Hemby … she helped get me all kinds of cool play things to have in my rooms during each of the many, many hospitalizations. When it was time for me to go be with Jesus ... she held my daddy’s hand and let him cry on her shoulder. There was no judgment; just understanding and a listening ear.”

“She has been there since day one for Gabriel,” said Glen. “She held our hands when it was time for Gabriel to leave this Earth and become an angel.”