"Do you want to listen to your heart?" the intensive care nurse asked 14-month-old Akilah Austin as she handed her a stethoscope.
Akilah grinned as she placed the diaphragm of the instrument on the center of her tiny chest, looking off into the distance as if listening. A second later, she moved it to another spot and seemed to listen again.
14-month-old Akilah Austin, with mother Lisa, is one of 78 children between ages 1 and 5 awaiting a heart transplant in the United States.
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"Very good!" nurse Adrienne Justis said, ruffling Akilah's hair as the toddler cooed and kicked her pink footies on top of two plastic valves attached to hoses running into her chest. At the far end of the valves, another set of hoses stretched into a metal console that powers the artificial heart that is keeping Akilah alive while she waits for a transplant.
Akilah is one of 78 children between ages 1 and 5 awaiting a heart transplant in the United States, according to the national Organ Procurement and Transplantation Network. And she is one of 80 children in the world relying on this German-made artificial heart, small enough to be used in toddlers, while waiting for a donor, medical experts said.
Before implanting the device into the Glen Burnie youngster in January, doctors at Johns Hopkins Children's Center had to win Food and Drug Administration approval to use the artificial heart, which is essentially a heart pump that takes over the function of the ventricles. Since the device cannot be bought in the United States, doctors acquired a heart pump from Cincinnati and tubes from Pittsburgh. Then the manufacturer flew in a physician from Germany to consult with Johns Hopkins doctors.
"In a small baby's chest, you cannot accommodate a replacement device. So what we have to do is connect the vessels of the heart to a machine that fits right outside the chest and assumes the cardiac function," said cardiac surgeon Luca Vricella, Akilah's physician. "Her heart right now is beating, but it might as well stop because the machine is beating for it."
The device, known as the Berlin Heart, buys Akilah time for doctors to find a heart they can transplant. Adults have survived more than four years on the device. Children have lived more than a year on it, Vricella said. "She has [made] a stellar recovery," he said. "She's sitting in her chair, playing with her toys and doing what a normal 1-year-old baby would do."
Akilah received the heart pump Jan. 29 -- 19 days after she was hospitalized for suffering what doctors initially thought was a seizure. She had seemed perfectly healthy up to that point, her parents said.
"She had been a little more fussy than usual for a few days because she had had a cold," said mother Lisa Austin, 33. "She was fussing while I changed her diaper, so her father put her pacifier in her mouth and she rolled over on her stomach. Then she turned back over, and I could see that she had turned purple. Her eyes had rolled to the top of her head. Her left leg started shaking. It was scary."
Akilah was transferred from a hospital in Anne Arundel County to Johns Hopkins Children's Center in Baltimore, one of the nation's preeminent pediatric cardiac care facilities. Tests there revealed that she suffered from a genetic mutation called Cardiac Troponin I, which had rendered her heart unable to pump blood effectively, doctors said.
After a biopsy verified the problem, she was given top priority for a transplant on the national waiting list kept by the Richmond-based United Network for Organ Sharing. She also was placed on a heart-lung machine, but that mechanism can be used for only three to four weeks with young children. When doctors tried to wean her from the machine, she went into cardiac arrest twice and suffered irregular heartbeats.
That's when doctors began considering an artificial heart. They opted for the Berlin Heart because of its size, said Vricella, who had never used the device.
Akilah's father, Marvin Austin, 27, said he was fearful of the surgery. "It terrified me that something might happen to her," he said. "They told us she might not make it because if she went into another cardiac arrest, she could die."
When the Austins saw Akilah after the surgery, they hardly recognized her. "She was lying there all swollen and puffy," her mother said. "She didn't look like herself."