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
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