Nalexia “Lexi” Henderson has something of a love-hate relationship with her heart.
“The noise can be aggravating, especially when I’m trying to get to sleep,” the teenager said from the 10th floor of UF Health Shands Hospital — the pediatric intensive care unit — where she has lived for the past seven months.
Lexi has an artificial heart that pumps from the inside of a case about the same size as the Victoria’s Secret Christmas box by her side.
Despite the heart’s distracting noise (which her mother calls “soothing”), Lexi said the device is a blessing.
“It’s giving me life,” she said. “I’m still alive.”
At 16, Lexi is the youngest patient in the U.S. to receive the SynCardia heart and its accompanying Freedom Driver case. The heart replaces both ventricles of the heart responsible for pumping blood to the body’s organs. It is powered by a battery-operated Freedom Driver case.
Patients use the device until they can receive a donor heart, and four years is the longest that someone has used an artificial heart, according to the SynCardia website. Five to eight months is the average wait time for a donor heart.
“It’s definitely very exciting,” said Don Isaacs, the vice president of communications at SynCardia Systems in Tucson, Ariz. “This is one of the best solutions when they need a bridge solution.
“We’re very pleased that (Lexi) is one of our patients. We’re hoping for the best for her,” Isaacs continued.
When Lexi arrived at the hospital in June, she thought she had the same stomach virus her mother had.
“But that wasn’t the case. As soon as I got here, on the 10th floor, that’s when everything went downhill,” Lexi said, sitting on the couch in the middle of the 10th-floor nurses station as if she was in her own living room.
Lexi had seizures and felt like she couldn’t breathe.
“They kept telling me to calm down and take deep breaths, and that was the last thing I remember,” she said.
“She was in profound heart failure and shock, and her organs were starting to shut down,” said Dr. Mark Bleiweis, the director and principal cardiothoracic surgeon at Shands.
The cause was damaged coronary arteries from a previous heart transplant that Lexi had had when she was 9 years old. A mysterious condition that is likely genetic, said Bleiweis, led to her first transplant.
“She had a simple cold virus, and it made her heart enlarge,” said Lexi’s mother, Laurette Ash. “We got here in the nick of time.”
Likewise, seven years later, it was just in time that Bleiweis and his team were able to save Lexi — by implanting an artificial heart. He said that her body had undergone a chronic process of rejecting the first heart over time, culminating in her sudden illness.
“(The artificial heart) gives people a second chance at life,” Isaacs said.
Lexi woke up to a 418-pound machine resembling a washing machine and dubbed “big blue” by her side, which powered her heart.
The device stabilized her heart but limited her mobility, and in November doctors replaced it with the Freedom Driver, which weighs 13.5 pounds and can be carried around in a shoulder bag or backpack.
“They get to resume their life without a human heart with the lifestyle of having a human heart,” Isaacs said.
The company has provided 157 hearts for implants in 2013 — twice its own record set in 2011 — and it has provided 1,256 hearts total, Isaacs said, adding that about 80 percent of patients have been successfully bridged to donor hearts.
The cost of the heart is about $125,000, which covers the pump for the first year; thereafter, the pump costs an additional $25,000 per year, Isaacs said, adding that most insurance companies cover the costs.
Lexi anticipates leaving the hospital sometime in January, but she won’t be able to go home to her native Sanford for a while. She and her mother will stay in Gainesville until a new donor heart is found.
They’ll spend Christmas in the hospital with Lexi’s brother and two sisters.
“On Halloween, we decorated. Here it is Christmas, and it’s Christmasy,” Ash said, amidst the presents and lights and Bible verses hanging on the walls.
“She’s doing wonderfully well,” Bleiweis said.