Children's Hospitals Today - Winter 2014 - (Page 32)

child'sstory Heart of gold One young patient becomes an advocate who helps raise awareness for children's health. I f it weren't for the scars on his chest, you'd never know that 5-year-old Jaden Vidal Velasquez was born with hypoplastic left heart syndrome (HLHS), a congenital heart defect that left one side of his heart severely underdeveloped. At the Children's Hospital Association's Annual Leadership Conference in October, Jaden was the life of the party. He donned a superhero cape, ran circles around every grown-up who came his way, and he handed out stickers to attendees to raise awareness for Speak Now for Kids (speaknowforkids.org). He's a pretty normal kid. "He gets tired, but he'll give you a run for your money first," says Belkis, Jaden's mother. During the first few years of his life, Jaden has dealt with more surgeries than most adults. When he was four days old, he underwent open heart surgery at St. Joseph's Children's Hospital in Tampa, Fla. Since then, he's undergone two additional open-heart surgeries, several catheterizations, the insertion of a gastric feeding tube and months of physical rehabilitation. Children who are born with HLHS often face tough medical issues, like organ damage. "Most kids with this are delayed, live on oxygen, and take multiple medications," Belkis says. "But he hasn't had any other issues." To help him stay healthy, Jaden's family keeps him as active as they can. He plays soccer and participates in tae kwon do and swimming classes. Belkis first found out about Jaden's medial issue when she was seven months pregnant. During an echocardiogram, doctors noticed they couldn't see his heart-it just wasn't clear. So they sent her to St. Joseph's for another echocardiogram. "That's when they told me that the left side of his heart seemed underdeveloped," she says. "My husband had been with me to all of my appointments up until this one because of scheduling. Learning the news that my child was going to need heart surgery right after birth was shocking." 32 children's hospital s today Winter 2014 At the Annual Leadership Conference, 5-year-old Jaden Vidal Velasquez represented Speak Now For Kids, an online network that helps people stay up-to-date on issues that affect children's health care. After Jaden was born, Belkis stopped working because Jaden needed a lot of care his first six months. She was going to quit her job and had turned in a resignation letter, but her manager wouldn't let her resign. Instead, they worked out a schedule to accommodate her family's needs. "I would work, which was my sanity when I was in the hospital," she says. "It was a difficult time, but we managed to get through it." It was also during those six months the family didn't earn enough income to cover Jaden's care, and Jaden became eligible for Medicaid. Soon, Belkis wanted to go back to work full-time and resume a normal life, but doing so meant Jaden was no longer eligible for Medicaid. "Obviously Medicaid covered a lot of our costs, but unfortunately, after we achieved just a little bit of professional success, we weren't eligible," she says. "And now we're faced with a high deductible." Last March, Jaden had a procedure to close a hole in his heart, but his heart rejected the procedure. Despite this, Jaden's parents are facing a $10,000 deductible. "And now we have to consider trying the surgery again next year," Belkis says. "If that hole is not closed, his quality of life is going to decrease." Jaden will continue to need special care throughout his life. The prognosis for kids living with HLHS is unknown. The surgery is relatively new, and there's not enough research to give an indication of the longterm prognosis. "We're just living day to day and enjoying life," Belkis says. "I don't want to think about that." Despite not knowing what the future will bring, Jaden will continue to raise awareness about kids' health care needs. "I just sat there the other day and I was tearing up seeing him work that room and talk to people," she says. He's an inspiration to others... he's our inspiration." -Amanda Bertholf childrenshospital s.org http://www.speaknowforkids.org http://www.childrenshospitals.org

Table of Contents for the Digital Edition of Children's Hospitals Today - Winter 2014

Children's Hospitals Today - Winter 2014
Contents
Edito's Note
President's Message
First Person
Everyday Hero
Reader Commentary
Helping Kids Affected by Burns
Behind the Numbers
Hands On
Healing Spaces
Board Member q&a
Public Policy Update
Child’s Story

Children's Hospitals Today - Winter 2014