Sunday, May 27, 2018
Human Interest

For these sick children, each tiny bead is a badge of courage

ST. PETERSBURG — After the transplant team finished its rounds, after nurses checked her oxygen level and a doctor came to say: Yes, she would have to have surgery again today, Maddie Price asked her mom to hand her the paisley drawstring bag hanging in her hospital room.

Maddie, 16, struggled to sit up. She was pale and puffy from all the medication. A month earlier, she had received her second new heart and suffered all kinds of complications.

She pulled a red card from the bag, then started checking boxes: X-ray, infusion, dialysis; physical therapy, occupational therapy, another night in the hospital.

She was supposed to update the chart every day, but she had been too weak. So on Wednesday she caught up, reliving everything she had recently endured.

Before she underwent another operation, she wanted to order her beads.

Nine black glass ones, that's nine needle stabs. Two beads that glow in the dark, one for each echocardiogram. Another surgery, another silver star.

She has earned more than 1,000 beads, including the biggest, for her June 1 transplant: a hand-blown heart.

There is just one more that she wants. More than anything.

• • •

Maddie was born with a hole in her heart and was a week old when she had her first surgery. At 5, she had to get a new heart. By 13, she had undergone six open-heart surgeries.

But by the start of high school at Calvary Christian in Clearwater, she felt stronger. She got good grades, worked on the yearbook, made lots of friends.

Then, two years ago, her heart weakened, and Maddie wound up back in Johns Hopkins All Children's Hospital, where a child life specialist told her about the Beads of Courage program.

At first, she thought it was silly. She just wanted her heart to heal so she could get back to her life.

But Maddie's dad thought collecting beads would be a good distraction. So she started filling out the red folders. And saving the beads in a plastic box.

By Christmas, she had so many that she glued them onto a white canvas, in the shape of a heart. She thought she was through earning beads.

Then in March, Maddie fainted. And learned she'd need another new heart. She checked back into the hospital — and hasn't left since.

• • •

An Arizona nurse came up with the idea in 2003. With donations from family and friends, and the International Society of Glass Beadmakers, she founded "Beads of Courage."

The idea, according to the charity, is to help sick children share their stories through beads — one to symbolize each medical milestone.

It gives patients a way to document what's happening to them, said Loren Mirsky-Piatkin, a Child Life Specialist at All Children's who helped start the program there three years ago. "It gives them something tangible, to see all they have been through."

More than 240 hospitals in the United States, New Zealand, Canada, Japan and Great Britain give out beads, including six in Florida. More than 500 patients at All Children's have been part of the program, which distributes about 300 beads each month. Donations cover all costs — $15,000 a year.

Each patient starts out with a hospital logo bead, and letters to spell their name. One mother threaded the beads into glass garlands and draped them around a tiny Christmas tree as she waited for her baby to get a new heart. When a kindergartener was released from the hospital, he took his jar of beads to show and tell.

So far, the hospital has handed out 20 heart transplant beads, including Maddie's.

• • •

Before a nurse gave her 15 medications, before another adjusted her IV lines and orderlies came to say "It's time for surgery," Maddie counted the tally marks on her red cards.

Her drawstring bag was heavy: 500 new beads since March. More than 100 were canary yellow, for each night in the hospital. She scooped into the bag, letting them filter through her thin fingers, small triumphs she could hold in her hand.

The last five days had been rough. She was raking in twice as many beads, including five that looked like little limes, for five more days in isolation.

She was so sick of virtual school, word searches, endless loops of HGTV. She couldn't wait to be back with her friends, to be able to eat sushi and make cupcakes.

After her transplant, everyone had celebrated the heart bead. But all these other problems kept cropping up. More beads just kept coming.

The only one she still wanted, she said, was the most important: a round bead made of clay instead of glass, with polka dots and swirls in bright neon colors. Twice as big as the others. She hoped to get it by August, in time for school.

The one that meant: discharged.

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