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The Catalyst

Stringing together a story of courage, triumph

By Mikie Hayes
Public Relations

NICU nurse Charlotte Edwards, from left, helps string beads for Stefanie Lane’s son, Trace, with the Children’s Hospital Volunteer Services’ Emily Wallace during the NICU’s launch of the Beads of Courage Program. photos by Tony Ciuffo, Public Relations

Brightly colored beads typically evoke memories of festive occasions; catching a shiny strand during Mardi Gras, friends creating bracelets at a birthday party. But when a purple bead represents a newborn’s infusion or a turquoise bead symbolizes a 4–day–old’s lumbar puncture, beads take on a different tone, one of triumph. Thanks, that is, to an uplifting program called Beads of Courage.

In the Neonatal Intensive Care Unit, every baby has a story. Beads of Courage helps families deal with the anxieties and the stress of their baby’s illness by recording every milestone, procedure, and act of courage. Parents receive a color-coded bead for events in their baby’s treatment and these beads are strung on a necklace that symbolizes what they’ve been through.

Stephanie Dumin, mother of Henry, waits patiently in the NICU. They have been in the NICU since Sept. 27, while Henry has endured several surgeries and many ups and downs. Dumin looks forward to journaling Henry’s daily struggles and his recovery. Dumin said, “It’s been a long 50 days facing the unknown. You never know what each day will bring. We go minute–to–minute some days.  I know when we do the beads we will realize how tough this time has been. We can explain the hardships to him and what he’s made it through.” Henry has been off the ventilator for nearly two weeks, a benchmark for which he will receive a very special, handmade glass courage bead.

NICU staff’s Charlotte Edwards holds up beads for her son, Legare.

Emily Wallace is with Children’s Hospital’s Volunteer Services and oversees the program. Beads of Courage gives parents a tangible connection to their babies when they are not able to be together. Babies are in our NICU for weeks or months, and the parents are not able to be here all the time. It allows them to have something physical to hold on to that represents their brave babies and everything they go through,” said Wallace.

The beads are a special keepsake for a family to remember just how far their baby has come: A yellow bead is given for each overnight hospital stay, black beads for every IV start and blood draw, a special dove for being discharged from the NICU. It's not uncommon for a patient to amass 800 to 1,000 beads during their stay.

Bringing the Beads of Courage program to the NICU was a labor of love for Charlotte Edwards, R.N., who gave birth to her son, Legare, when she was only 25 weeks along. Following an emergency C-section, Edwards was transported to MUSC where she, and husband, Adam, stayed by Legare’s side for 118 days. Edwards soon came to the realization that parents in the NICU needed something that provided hope.

Eighteen months later, while volunteering at the Children’s Hospital, Edwards learned about Beads of Courage and felt it could be a comfort to parents who were suffering as her family had. As she finished nursing school, she asked family and friends to make gifts to a fund in Legare’s honor in lieu of buying her graduation presents. She raised nearly $2,000 of the $5,000 necessary to start the program.

Legare is now a healthy 6-year-old who loves to share the story of his necklace. His favorite bead is his Bead of Courage — commemorating his extubation after having been on a ventilator for 75 days.                                                            

“Over time, parents remember the major milestones, and big events like surgeries, but forget the day–to–day. The beads are a storyboard that allows me to tell his story and his fight to be here. Legare can see, touch and feel his beginnings and the courage it took for him to survive." Edwards said.

Edwards now works in MUSC’s neonatal nurseries and feels fortunate to be caring for babies like Trace Lane, who was born 11 weeks premature and has been in the NICU for more than 90 days. His mom, Stefanie, is by his side every possible moment, but she and her husband, Brandon, both work full–time. She laments every moment she is apart from Trace. “It’s very tough putting him in his little bin and walking away."

As Stefanie strung Trace’s necklace, starting with the five square beads that spelled out his name, she noted, “This gives me a tie-line to him. We focus on the day–to–day and this necklace will give us the whole picture. When we are away from Trace, this will occupy our time. It’s very sentimental.” She looks forward to the day she can share Trace’s journey of survival with him, bead by precious bead.

November 22, 2013

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