House Fire Destroys a Child’s One-of-a-kind Necklace Chronicling her Heart Surgeries

Penny Pate was asleep when her home unexpectedly caught fire in May 2014. Penny’s two sons discovered the blaze that started on their front porch and alerted their parents in the middle of the night. Penny and her husband John had just enough time to get themselves and the four children out the back door to the safety of the backyard. To their horror, the entire house went up in a blaze.

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“I couldn’t believe it,” Penny said. “To see the entire house  in flames was heartbreaking.”

The Pate family’s two dogs were lost in the fire along with most of their worldly possessions, including a treasured jewelry box that Penny kept next to her bed. Among the box’s contents was a long strand of beads. These were no ordinary beads. These beads had a special significance to Penny and her three-year-old daughter, Faithlyn.  An assortment of different colors and shapes, these beads were not something that could be easily replaced – not because of their monetary cost but because of their deeply personal, sentimental value.

Faithlyn was born with a condition called hypoplastic left heart syndrome, a rare  congenital heart defect in which the left side of the heart is smaller and less developed than the right side. The condition forces  the right side of the heart to do double duty and pump blood to both the lungs and the heart. Hypoplastic left heart syndrome is among the most severe of all heart defects in children and requires surgery in three separate stages throughout the first few years of the child’s life.

Dr. William Douglas, pediatric cardiothoracic surgeon affiliated with Children’s Memorial Hermann Hospital and chair of the Division of Pediatric Cardiovascular Surgery at McGovern Medical School at UTHealth, is the surgeon who operated on Faithlyn. “These procedures are extremely complex and come with a higher risk than other, more common operations,” Dr. Douglas said.

To encourage and support young patients with a severe diagnosis like Faithlyn’s the team at Children’s Memorial Hermann Hospital devised a creative way to chronicle individual journeys by acknowledging he unique challenges these patients face and celebrating each milestone achieved throughout the healing process. And so the B.E.A.D.S. program was created.

B.E.A.D.S. stands for Boldly Experiencing and Accomplishing Difficult Situations. In the program, patients receive different beads for a variety of situations.  A red pony bead is given for a needle poke (an IV start or a blood draw). A glass heart bead represents an open-heart surgery. A smiley-face bead is given when the patient is discharged from the hospital. More than 35 different types of beads can be awarded to recognize patients’ challenging situations and accomplishments.
Due to the severity of her heart defect, Faithlyn had collected over 100 beads during her stay at Children’s Memorial Hermann Hospital. Faithlyn and her family were devastated when those beads were lost in the fire. “They represent so much more than just her medical achievements,” Penny said. “They really represented her life.”

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In fact, the beads meant so much to Faithlyn her mom contacted  the hospital to request a replacement strand from the Child Life and Expressive Therapies team. “So many families see these beads as a milestone and a step toward getting better,” Child Life specialist Kimmie Bayliss said. “These beads help chronicle so much more than just procedures. The beads chronicle an experience and tell a story in a new way. When Penny contacted our team to have the beads replaced, it let me know how meaningful this program can be for our patients. I try to make every interaction with our patients memorable so I know I have done my job properly.” Bayliss worked with Faithlyn’s care team to replace each bead one by one that Faithlyn had lost.

“In Faithlyn’s case, all three of her operations went extremely well and the only thing left for her is a heart catheterization,” said Dr. Douglas.

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Even though her major heart operations are behind her, Faithlyn will continue to check in with the team at Children’s Memorial Hermann Hospital to make sure everything is working as it should. And thanks to the B.E.A.D.S. program, her journey to reach this point will yield a priceless memento she can keep with her for the rest of her life.

 

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Faithlyn’s condition, hypoplatstic left heart syndrome, is among the most severe of all heart defects and is first evident at birth. Symptoms include trouble breathing, a weak pulse, a pounding heart or even a bluish skin color. Studies have found that children who survive the multiple surgeries go on to develop normal IQs and experience a good quality of life.

“I couldn’t imagine another doctor working on my daughter’s heart,” Penny Pate said. “Dr. Douglas and his team have been amazing throughout this entire process.”

Learn more about Children’s Memorial Hermann Hospital.

Tashika Varma