Free to be a kid
Artificial heart not stopping 16-year-old from living
By Karen Thurston Chavez
Sixteen-year-old Nalexia “Lexi” Henderson was all smiles in early December as she set her own pace, picked her own path and easily weaved around nurses and equipment in the halls of the pediatric intensive care unit at UF Health Shands Children’s Hospital.
It had been six months since Lexi was able to move around so freely. On June 3, she became the first person in Florida to have a SynCardia temporary Total Artificial Heart implant, the only approved mechanical device that eliminates the symptoms and source of heart failure.
UF Health Shands Hospital is the first in Florida to implant the SynCardia heart and become a SynCardia certified center.
The artificial heart fits neatly inside the body. The equipment that powers it, however, does not. Dubbed “Big Blue,” the machine weighs 418 pounds and is the size of a washer.
On Dec. 9, Lexi became the youngest patient in the world to use the SynCardia heart with the Freedom portable driver — a wearable, battery-powered, pneumatic machine that keeps her synthetic heart pumping blood throughout her body.
The Freedom driver allows Lexi to have a more normal life while she awaits her second heart transplant. Her doctors hope Lexi and her family will be able to move into temporary housing that’s available for patients waiting or recovering from organ transplant.
“I can go to transplant housing, I can go to the movies, go shopping, do all kinds of things,” Lexi said from her hospital room, decorated with Hello Kitty, inspirational quotes and her own bedspread.
Movies, shopping and hanging out with her friends were Lexi’s favorite things to do before got sick last spring. When she arrived at UF Health Shands Children’s Hospital in mid-May, she thought she just had a very bad stomach virus. She’d had relentless stomach pains and had been throwing up for several days. It was much worse than that, however.
She was diagnosed with severe cardiac allograft vasculopathy, a condition in which the coronary arteries are severely damaged by risk factors associated with a heart transplant.
Lexi received her first heart transplant at UF Health Shands Hospital in 2007, after developing dilated cardiomyopathy — her heart became enlarged and weakened — for an unknown reason.
In May, she was in severe heart failure again; her heart could no longer pump enough blood to keep her other organs functioning. Her body was shutting down.
Her cardiac care team initially tried using extracorporeal membrane oxygenation, or ECMO, a method of providing cardiac and respiratory support to patients whose heart and lungs can no longer function.
“There was no question she was dying. All of her organs had shut down. She was in dire straits,” said Mark Bleiweis, M.D., director and principal cardiothoracic surgeon for the UF Health Congenital Heart Center. “We supported her with ECMO for a short period, but her previous transplant was failing; she was in deep trouble.”
UF Health surgeons implanted the artificial heart in an effort to stabilize Lexi, so she would be healthy enough to survive transplant when a donor heart becomes available.
While UF Health offers pediatric and adult cardiac patients a variety of ventricular assist devices, the primary devices for children are the SynCardia temporary Total Artificial Heart and the Berlin Heart.
In 2006, UF Health Shands was the first in Florida to use the Berlin Heart, an external device specifically designed for children that connects to the patient’s own heart. With the SynCardia heart, surgeons remove the heart’s four chambers — both atria, or collecting chambers, and both ventricles, or both pumping chambers — and implant the SynCardia device in their place.
Without devices like the SynCardia heart, there are limited options for children in severe heart failure, Bleiweis said. The SynCardia heart was a better choice for Lexi, who is nearly adult-sized, because it is a larger device and can pump more blood than the Berlin Heart, he said.
“We chose a machine to help the heart because we feel medication alone won’t be enough for them to survive until transplant,” Bleiweis explained. “With the SynCardia heart, Lexi’s other organs have completely recovered. She’s now an excellent candidate for transplant.”
“It was a little scary at first, but it was a good thing,” Lexi said. “I feel like my normal self. There’s nothing bad about the SynCardia Heart; you got life.”
Lexi’s mother, Laurette Ash, never doubted her daughter’s strength.
“The 23rd Psalm: The Lord is my shepherd, I shall not want,” Ash said. “He’s our shepherd. I feel like we’re going through this for a reason. I don’t know what the reason is yet. But from where I’m standing, it’s fine because she’s going to be OK. She’s come a mighty long way.”