Beads program puts children's fighting spirit in parents' hands

Photo by Brian Giandelone

Photo by Brian Giandelone

LAWRENCEVILLE — Ian and Isabella McLeod were born Nov. 8. Twins born at 23 weeks old, seemingly a lifetime too early.

Just two days later, Isabella passed away from pulmonary hypertension and brain bleeds.

On Nov. 29, Ian was transported from a hospital in Athens to Gwinnett Medical Center’s neonatal intensive care unit. His young parents, Chad and Kelly McLeod of Social Circle, went with him.

Beads of Courage was started by Arizona nurse Jean Baruch, with the pilot organization at Phoenix Children’s Hospital adopting the program in February 2004. The program typically focuses on giving pediatric oncology patients the ability to “record, tell and own their stories of courage.” Individual beads represent different experiences, trials and milestones during treatment.

In December, Gwinnett Medical Center’s Neonatal Intensive Care Unit became the first of its kind to adopt the program.

“We’ve experienced the highest highs and the lowest lows,” Kelly McLeod says recently. She’s sitting in GMC’s NICU, her home away from home. Ian, weighing just 1 pound at birth, is a few feet away in an incubator.

McLeod’s husband chimes in.

“And it’s all told, right there in those strands,” Chad says.

On this day, the “strands” around Kelly’s neck number 10. Now there are 11, with another quickly approaching. Each represents one week Ian has spent at Gwinnett Medical.

On them are symbols of the NICU’s most recent undertaking, one of compassion and comfort, and one that no other neonatal unit in the country has adopted. They are dozens and dozens of “Beads of Courage.”

Piloted by an Arizona nurse in 2004, the Beads of Courage program typically gives glass beads to childhood cancer patients, a type of therapy to help them “record, tell and own their stories of courage.” Beads are given for each scan, each treatment, each trial they go through.

In December, Gwinnett Medical Center became the first NICU in the United States to become a part of the project. With desperately sick and premature babies coming and going every day, it was a natural fit.

“What goes through my mind when I look at them all is just how incredible his journey is,” Kelly McLeod says. “Just how strong he is and what a fighting spirit he has. I look at it and I think what a miracle he is.”

The McLeods have never counted all of Ian’s beads, but quick math lands them at an estimate pushing 1,000.

Danielle Potts has a similar story. Her daughter Dallas was born Jan. 7, at just 22 weeks. She didn’t get to see her until nine days later. The quarter-inch beads that spell out Dallas’ name are wider than her tiny feet, almost as tall.

It’s a fairly simple concept. But to parents like Danielle Potts and the McLeods, the beads mean everything.

“Each day that she gets beads, it lets me know that she’s still alive, she’s still here,” Potts says. “It lets me know that she is a fighter. It helps me get through the days.”

Something to hold

Several other NICUs across the country — most recently one in Dallas, Texas — have toyed with implementing Beads of Courage in recent years. The problem, as can be expected, is funding. It’s roughly $5,000 to start the program, and can be up to $1,500 a year for beads and upkeep.

But when Gwinnett Medical nurse practitioners Suzanne Tillman and Ashley Deberry presented the idea, resident neonatologists Dr. Dan Suskin and Dr. Leslie Leigh were easy sells.

They would pay for the program out of their own pockets.

“That was the easy part,” says Tillman, who, along with Deberry, is the NICU’s “ambassador” for Beads of Courage. The hard part was roughly a year of paperwork, training and clearance with risk management (bringing small beads into an atmosphere with sick babies is a unique proposition).

The project officially starting on Dec. 8 last year, the family of any baby born at less than 34 weeks or “sick enough to where they’ll have to stay here for a while” eligible, Tillman said. To date, the NICU has enrolled 34 patients.

Because many of the babies the GMC NICU sees are so premature or so sick, they spend most of their time in incubators, hooked up to a seemingly endless stream of ventilators and tubes.

The beads can be all their parents have.

“I think what you see in these families is that they have something tangible to hold on to that represents their baby,” Suskin says. “In our case, it can be many weeks and sometimes months before parents get to really hold them or even touch them in any meaningful way. It gives them something to hold.”

Each bead given has a special significance. In addition to beads spelling out their name, each baby gets a turtle upon admission to the NICU. There are green ones for dialysis, pink ones for respiratory support and glass hearts for “parental firsts” like bathing, feeding and holding.

The ever-present yellow beads are given for each overnight stay, letting parents track exactly how many days their child has fought for his or her life.

“Some of them do lots of strings, some of them do one big long string,” Tillman says. “They can string them however they want. We don’t string them for them. Part of the therapy is letting them string the beads themselves.”

Less than two months into the foray, Suskin doesn’t hesitate to say it will be a program the Gwinnett Medical Center NICU plans to keep.

“Oh yeah,” he says. “Forever.”

The ultimate show and tell

Kelly McLeod says she’s already restrung her necklaces three times, and will likely do it three times more. The most recent string, the one with the fewest beads, is her favorite.

She spends the entirety of most days at GMC, sitting near Ian (who weighs more than three pounds now) and awaiting Chad’s arrival after work. The couple typically stays well into the night before making the 40-mile pilgrimage back to Social Circle, only to do it all over again the next day.

The beads are solace, and stringing them a type of therapy. But for the McLeods, Danielle Potts and every other parent that comes through the NICU, the ultimate goal is that one final bead — a dove, given only upon discharge from the unit.

“She can take them to show and tell when she goes to school and say, ‘I bet none of y’all have been through this,’” Potts says. “I’ll just let her know every little thing that she had to overcome just to even be here.”

The best prize will be to use the beads in the future, to show a still-growing child exactly what they went through to make it that far.

“We joke that when he’s old enough to start talking back that we’re going to be able to pull out these beads and say, ‘Let us explain something,’” Chad McLeod says. “When he says I can’t? Guess what? Son, you can.”

Some of the beads given, and the treatments/milestones they represent:

• Turtle: Admission

• Clinic visit: Blue

• Dialysis: Dark green

• Emergency/ambulance ride: Magenta

• General surgery: Silver star

• Pokes (IVs, blood draws): Black

• Transfusions: Red

• Tests/scans: Light green

• Cardiac surgery: Square heart

• Parental firsts (bathing, feeding, holding): Glass heart

• Discharge: Dove

While members of Hebron Baptist Church have donated bead bags, Gwinnett Medical’s NICU is looking for more help. To assist or for more information, e-mail Suzanne Tillman at suzanne.tillman@duke.edu.

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