Teen paving way for heart transplant devices at MUSC

CHARLESTON,S.C. (WCIV) - A year ago, 3-year-old Morgan Porter was suffering from heart failure and depended on a massive machine called the Berlin Heart to keep her alive.

Now, there's another child - 16-year-old Jake Paul - with the same problem, but the device keeping him alive is small enough for his heard to carry.

Jake Paul is a shy boy, outdoorsy, and quiet around cameras and microphones. Even when the camera is his own, he lets Mother Nature do the talking; he just responds.

His quietness is no indication of the weight he carries on his shoulder.

"We didn't find out he head heart failure until November 2012," said Larenda Paul, Jake's mother. "His heart, it was so enlarged that the muscle had stretched so far out that it was barely squeezing."

Eight months ago Jake was diagnosed with dilated cardiomyopathy.

"He really didn't make a big deal out of it because he wasn't feeling any symptoms," his mother said.

Between doctor's appointments every two weeks, Jake tried to go fishing whenever he could. That lasted until April, when his heart took him off the pier.

"He ended up needing to be put on a ventilator. His kidneys started shutting down. He started developing liver dysfunction," Larenda Paul said.

It landed him in the Intensive Care Unit at Medical University Hospital.

"There was no sleeping in ICU because he had to be on oxygen," she said. "And somebody had to be in there with him to make sure he had his oxygen back on."

Jake's parents took turns by his side.

"On my nights off, I would either stay in my truck or stay in a room when I had the money," said his mother. "I've lost about 20 pounds. So has Jake; he lost 24 pounds throughout all of this."

While they waited, doctors considered their options.

"The devices that we had at our hospital, known as the Berlin Heart, required the patient to stay in-house potentially for up to six or nine months," said Dr. Minoo Kavarana.

Then there was an alternative - a palm-sized heartware device.

"All that comes out of his body is a 4 millimeter driveline connected to a battery pack he wears on his belt. And that's all it takes to drive his blood to the rest of his body," said Kavarana.

For $250,000, doctors and the Pauls were able to keep Jake's heart pumping until a new heart is available.

"Initially, the hospital has to take a leap of faith. This is not a cheap device," said Larenda Paul. "This is also not a device that has been FDA approved for long."

But the innovation was worth the time and the bill. Jake was in need so MUSC made an investment on his behalf.

"Early, 4 a.m., they did blood work and his organs were failing so they let me know at 6 a.m. they had to put him to sleep one day early," his mother said. "Next thing I know, they were having emergency surgery on him."

Three days later, Jake became the first patient in the state with the heartware device.

"We can go do things now, whereas the older devices you would have to push a cart," said the teenaged Paul.

With a pouch at his side, Jake is up and moving and the silence during lunch carries a different tune.

"I can't even describe because he was not able to eat for two months. He would get sick. And now to see him get his appetite back," Larenda Paul says, smiling at her son's recovery.

While Jake's mother is getting her son back, his doctors are getting a patient capable of undergoing a heart transplant.

"Physically, he's much stronger. He's put on a lot more weight. And he'll be able to tolerate his transplant a lot better," Kavarana said.

A dose of shyness may be just what the doctor ordered. After all, Jake is paving the way for dozens of hearts just like his.

Jake is still on the waiting list for a heart transplant.

While he can fish and move around with the heartware device, he cannot participate in things like contact sports.