The 8-month-old became the youngest patient in Utah to receive an experimental heart pump Wednesday, just months after her mother, Shauntelle, felt something wasn't right with her third child.
Without the device, implanted during a seven-hour surgery at Primary Children's Medical Center, Kaidence would have died of heart failure, according to her doctors.
"I'm getting my baby back," said an emotional Shauntelle Stephenson during a news conference Thursday announcing the surgery. "This truly is a miracle in our lives. We are so grateful they [doctors] were willing to take a chance on us."
The medical center sought and received approval from the Food and Drug Administration for emergency compassionate use of the German-manufactured Berlin Heart. It is the only pump small enough to be used in infants, but it is still being tested in the United States.
It was a last hope for Kaidence.
"We didn't have further medical therapies to offer her," said Melanie Everitt, the girl's cardiologist and medical director of the hospital's Heart Failure Program.
The Stephensons believe their daughter was born healthy, but three months ago, Shauntelle Stephenson noticed Kaidence couldn't cry out and that she was sweaty. Her pediatrician ordered an X-ray to rule out pneumonia and that's when doctors discovered Kaidence's diseased heart was three or four times the size it should have been. It was crushing her lungs, making it hard for her to breathe. This led to a diagnosis of idiopathic dilated cardiomyopathy, a common cause of heart failure.
The diagnosis came just in time: Stephenson was told that Kaidence was days away from dying.
The life-saving pump is temporary. It could either restore function in Kaidence's heart, which was working at 3 percent at one point, according to her parents. Or it could make her strong enough to get a heart transplant. Kaidence is on the wait list. Everitt said the national average wait time for babies is 77 days and during that time Kaidence's kidneys could have started to fail, knocking her off the list. Already, her left lung had collapsed from the pressure of her enlarged heart.
"The wait time seemed to be longer than the time Kaidence had," Everitt said.
Shauntelle and Mike Stephenson are hoping to avoid a transplant and that their daughter's heart will recover. Still, Shauntelle Stephenson said she was "terrified" to decide to approve the experimental pump, which has been used on 100 other patients in North America and is more widely used in Europe. It is expected to be approved in the U.S. in 2009, according to Kaidence's doctors.
"We have two choices: We either let her sit in the bed and waste away . . . or we take a chance on this procedure," Shauntelle Stephenson said.
Another option could have been ECMO, a heart-lung machine, but it is more invasive and has more side effects. Patients have to be on blood thinners and be sedated. And there is a higher risk of organ failure, said Madolin Witte, who oversees the use of such devices at Primary Children's.
Peter Kouretas, the cardiovascular surgeon who performed Kaidence's surgery, said the pump basically bypasses the heart, supplies blood to the rest of the body and sits outside the chest.
Kouretas estimates the Berlin Heart could be used on about 50 pediatric patients a year in Utah. He is also working with doctors at the University of Pittsburgh to devise an even smaller heart pump that could be implanted.
Kaidence has been in the hospital since Oct. 6 and likely won't leave until next year - either when she has a heart transplant or her heart recovers on its own.
According to the family, a fund to cover Kaidence's medical bills has been set up at America First Credit Union.
hmay@sltrib.com
