Boy With ‘Half a Heart’ Brings Story to Capitol Hill

Jaden Velasquez, 4, can play soccer, throw a kick in karate class and even charm a Congressman.

Those things are possible today thanks, in part, to the specialty care the Carrollwood youngster received at St. Joseph’s Children’s Hospital, said his mother, Belkis Velasquez.

Jaden was born with “half a heart.”

The condition is called Hypoplastic Left Heart Syndrome, which is a congenital heart defect that results in the left side of the heart being severely underdeveloped, according to a media release from St. Joseph’s. Jaden underwent his first surgery to begin the process of repairing his heart when he was only 5 days old. He has since had multiple surgeries and is looking at more.

Belkis first learned about Jaden’s condition when she was 7 months pregnant. She and her husband, Johnny, prepared themselves for the road ahead and set out to make sure they could give Jaden the best life possible.

That’s where St. Joseph’s Chronic-Complex Clinic came into play, Belkis said. The specialty facility provides a place for pediatric patients with multiple life-threatening conditions to visit all of their specialists at one time.

“It’s amazing for us to have that one-stop shop where he can see all his specialists,” Belkis said. “We would love to see others have the same care that Jaden has received here.”

That’s the purpose for the Velasquez family’s trip to Washington, D.C., June 18-20. The Velasquezes are traveling with representatives from St. Joseph’s to discuss pediatric health care and the need for a “nationally designated pediatric network that will ensure kids like Jaden can receive life-saving care,” according to St. Joseph’s.

While in Washington, D.C., they’ll meet with such local representatives as U.S. Reps. Gus Bilirakis and Dennis Ross and Senators Marco Rubio and Bill Nelson.

St. Joseph’s representatives travel each year to Washington, D.C., to speak with Florida’s Legislative Delegation about local healthcare issues. Each year, a family like Jaden’s comes along, said Keri Eisenbeis, the hospital’s director of government relations.

The hope, Eisenbeis said, is to help Florida’s representatives in Congress see “firsthand what having a dedicated children’s hospital means.” By bringing along a family, it enables them to have a “chance to tell their story in a way that other people can’t.”

Hands-On Care Comes At a Cost

St. Joseph’s Chronic-Complex Clinic has about 1,000 patients on its roster, Eisenbeis said. Many of those patients are on Medicaid. While patients receive care from specialists at the clinic, the hospital is only reimbursed what Medicaid pays for a healthy kid checkup.

The clinic operates at a loss, Eisenbeis said. Even so, St. Joseph’s picks up the tab through its foundation and other avenues of funding. It is hoped, however, that someday Medicaid will reimburse more for the kind of specialty care patients receive at the clinic and that by doing so other medical centers will adopt a similar “one-stop” approach for treating patients with complex conditions like Jaden’s.

St. Joseph’s Chronic-Complex Clinic is the only one of its kind in Florida, Eisenbeis said, adding that it’s been open for about a decade.

“There needs to be more of it,” she said.

So, why does St. Joseph’s do it?

“It’s the right thing to do,” Eisenbeis said.

The Results

Jaden isn’t out of the woods yet, but his progression has been a success story for St. Joseph’s and the Velasquez family.

“Jaden is doing outstanding,” his mother said. “I count my blessings every single day. He just finished soccer and he is going into karate. We’re enjoying him.”

Belkis said she and Jaden’s Dad made the decision to give him the best life he can have and make sure he has the ability to just be a kid.

“We’re very happy.”

They couldn’t have done it without St. Joseph’s, she added.

“This is our second home.”

To find out more about St. Joseph’s Children’s Hospital, visit its website.