Local teen receives life-saving heart, liver transplant

2012-04-13T00:00:00Z 2012-04-18T10:40:41Z Local teen receives life-saving heart, liver transplantBy Vanessa Renderman vanessa.renderman@nwi.com, (219) 933-3244 nwitimes.com

Tom Castillo's heart started beating inside his 15-year-old frame six weeks ago.

The one he was born with was flawed, forcing a life of operating rooms and overheard cardio jargon upon him.

In a 20-hour surgery, Tom received the bittersweet gift of a heart and liver that had belonged to another teenager. It will give him a chance at something close to a normal life.

"It's been a fight, it's been a struggle," his grandfather Santos Morin said.

He and Tom's grandmother, Linda Rebeles, have custody of the teen, who was in his freshman year at Bishop Noll Institute when health problems landed him at Children's Hospital of Wisconsin, where his longtime doctor now is practicing.

Tom was born with heart blockage and pieces of the vital organ missing. Doctors made him as whole as they could, including implanting a Pacemaker at age 2.

"From the time he was 8 weeks old, till about 12, he's had nine heart surgeries," Morin said.

Aside from having more doctor visits than his peers, things were going well.

"He was going to school and doing OK," his grandfather said.

At 12, Castillo started experiencing cysts in his esophagus that would break and bleed. His heart was not pumping properly so veins grew and dumped blood in his lungs, which made him cough blood, Morin said.

Surgery was a short-term fix, and the problem returned, as doctors said it would. He suffered two strokes. Tom, who had been placed on a heart transplant list two years ago, was shoved to the bottom of the list after the second stroke.

Doctors did not know if they could give him a heart because he could not speak to communicate how he felt.

His health deteriorated, and his grandparents agreed to "do not resuscitate" orders. Not long after, his speech returned. It was a signal to doctors that he belonged back on the transplant list.

A week later, the news came.

"We were here in the hospital, and the doctor said, 'Are you ready to go to surgery?'" Morin recalled. "We said, 'What do you mean?'"

The doctor explained it was time for Tom to have a new heart and liver to replace his own damaged organs. The Feb. 29 surgery took 20 hours.

He is doing well, focusing on rehabilitating from his most recent stroke. He speaks but has trouble forming sentences. He cannot move his left hand but is starting to regain motion in his left leg.

"But as far as his heart and liver, he's great," Morin said.

His other organs are doing great because of the new liver and heart, but he may need to have his kidney function tested in the future.

Tom is expected to return to his Southeast Side Chicago home in a couple of weeks. His grandfather said the house needs a ramp and renovated bathroom to accommodate Tom, but the work is too costly.

Once home, he will attend Rehabilitation Institute of Chicago in Homewood.

Because the rehab will be so aggressive, Tom's grandparents hope he will be able to return to Bishop Noll in the fall. School officials said there always will be a place for him, Morin said.

Tom has big plans for his future. He wants to attend Texas A&M and become a pediatric cardiologist.

"He said, 'I want to help other kids like me,'" Morin said. "I hope he makes it. I hope he follows his dream."

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