Battery-powered pump is implanted in teenager with unexplained heart failure
Tuesday, January 12, 2010
It was the kind of complaint any mother of a 16-year-old has heard a hundred times: "Mom, I don't feel well."
Sandi Keys told her son, Savoy Bradford, to come home from his friend's house on that day last July. The boy's symptoms had begun with a headache, but after a couple of days he was vomiting and couldn't get off the couch. Keys wasn't too worried: "He has a bad stomach virus," she recalls thinking.
What Keys couldn't have known was that the formerly healthy and active teen's heart was beginning to fail.
Three weeks later, Savoy would be in an induced coma at Washington Hospital Center, with an external heart machine keeping him alive. A virus, doctors told Keys, appeared to have attacked Savoy's heart and damaged it beyond repair. Savoy was put at the top of the hospital's heart transplant list.
At the same time, the boy's cardiologists prepared to implant an artificial heart that would pump his blood for him. Savoy's own heart would stay in place, but it would not have to pump the blood through his body. The Suitland teenager would become one of the youngest patients ever to get the device, doctors told Keys, and if it worked well, might be able to resume a fairly normal life while he waited for a donor heart to become available.
Savoy's recovery since the Aug. 24 implant surgery has been even better than his doctors had hoped for. He has come so far that last week he returned to school, thrilled to be back among classmates on the first school day of 2010 at Forestville Military Academy. Other than being 70 pounds thinner than before, Savoy looks just like the nearly 6-foot kid who left ninth grade seven months ago, healthy and carefree. He still jokes affectionately with friends and teachers and spouts rap lyrics he makes up on the spot.
But there are some big differences: A constantly whirring motor now pumps his blood. The power cord for his artificial heart runs through an incision in his abdomen. And Savoy has to carry the controller and battery packs for his pump in a black messenger bag slung over his shoulder.
He also no longer has a pulse.
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When Samer S. Najjar first met Savoy, the boy was critically ill in the intensive care unit at Washington Hospital Center; since then, Najjar has overseen the effort to save the boy's life.
"It was obvious that the amount of blood that was being pumped was not enough," says Najjar, the hospital's director of heart failure. The doctors didn't know why Savoy's heart had become enlarged and weak; the cause of his dramatic decline was considered "idiopathic," or unknown. Their best theory was that Savoy had contracted a virus that had damaged the heart. The cause of his heart failure remains a mystery even now.
The doctors first tried various powerful medications to ease the strain on Savoy's heart muscle, but his condition continued to worsen. Eventually, with his other organs also suffering damage, they told Keys that Savoy needed a machine to pump his blood for him.
"When it was time for me to sign the consent forms, I signed them and turned around and asked Dr. [Leslie] Miller, 'If I hadn't signed the papers, what would've happened to Savoy?' " Keys says. "And he told me he would've died."
The initial procedure to attach the external pump stabilized Savoy, but within weeks he had another surgery to implant a smaller, internal pump right next to his heart. Called a left ventricular assist device, or LVAD, it is designed to take over the function of the heart's left ventricle, the chamber of the heart that pushes oxygenated blood through the aorta to the rest of the body. Savoy's heart still squeezes a tiny bit, but these heartbeats are not strong enough to pump his blood.
Inside Savoy's LVAD, which is about the size of a lemon and has tubes on either end, rotors whir at 8,800 revolutions per minute, forcing a constant stream of blood from Savoy's heart to the farthest reaches of his body.
About 2,000 patients in the United States have had these devices implanted since they were introduced about 10 years ago. "Most of them are adults; there have only been 22 patients under the age of 18. Savoy is one of them," Najjar says. Washington Hospital Center is one of only two Washington area hospitals that implant LVADs; the other is Inova Fairfax Hospital.
Data on the long-term survival of LVAD patients are still being recorded. The latest study of the newest LVAD model, which Savoy is using, found an 18-month survival rate of 65 percent. Najjar hastens to point out that most LVAD patients are much older than Savoy, so his youth and generally healthy background may give him an advantage. The two-year survival rate for end-stage heart failure patients who do not receive an LVAD is only about 8 percent.
"These devices have made a huge difference," Najjar says. And when they're used "as a bridge to transplantation," he explains, the survival rate for LVAD patients goes up to about 80 percent. That is the plan for Savoy, unless his heart repairs itself.
In a few LVAD patients, the damaged heart muscle, relieved of its massive workload, has recovered on its own. Doctors don't know why this happens in some patients and not in others, but they hope it will occur with Savoy, in which case the LVAD would be removed and the heart would resume its job. Because he has done so well -- no complications, strong vital signs and good energy -- doctors moved him to No. 3 on the transplant list, which will give his heart more time to heal.
Savoy will have regular scans to monitor the health of his heart muscle, but signs of improvement will take a while. "We don't expect to see anything for six to eight months," Najjar said.
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In the meantime, there is the business of returning Savoy to his normal daily life, no easy task for a socially starved teenager who is as forgetful as the next 16-year-old but now has to make sure he never goes anywhere without a spare set of batteries.
His messenger bag contains a control device for the LVAD and the batteries that power the pump. In a second bag he carries backup batteries and a spare controller. Altogether, the load is about eight pounds.
"I'm stuck with it; what can I do?" he says with a smile and a shrug. Beneath the joking, Savoy understands the seriousness of his situation. If the two specialized batteries powering his LVAD run low, an alarm sounds that tells him he has 15 minutes to install a fresh set. Remembering to carry the second bag has been one of the challenges of becoming more mobile and active.
When Savoy goes for a checkup, Carolyn Hanny Gilbert, the LVAD coordinator at Washington Hospital Center, begins the exam by checking the records of his machine to see what kind of alerts it has emitted since his last visit, such as low power, critical power and no power, and quizzing him about them. Then she asks him about the numerous medications he takes. What's the dose? What does this medicine do for you? Has your dosage changed? And so on.
Mostly, Savoy gets the answers right. "He's been to LVAD school," she explains. "Its important that all our LVAD patients know this stuff on their own."
But at 16, it can be a lot of responsibility to take on, which is why Najjar and Hanny Gilbert went to Savoy's school last month to train teachers and administrators on the basics of LVAD care. That included what the different alarms sound like, why alarms go off, how to change the batteries on the LVAD, what it means if Savoy loses consciousness, whom to call in an emergency, and why it's okay that he doesn't have a pulse. "His heart is no longer pumping his blood, and that's what makes your pulse," Hanny Gilbert explains.
Standing at the front of a packed conference room at the spotless campus of Forestville Military Academy, a public high school, the medical team first describes Savoy's condition in general terms but soon gets into a nitty-gritty question-and-answer session with the staff that includes hands-on demonstrations of an LVAD controller and how to change the batteries.
"What if friends try to hug him?" asks one teacher. Hugs are okay, as long as his bag stays close to him, Hanny-Gilbert answers.
"Will teachers have to make any accommodations?" asks another. Only that he may have to change his batteries, she says. That hopefully won't happen often: The batteries should last eight to 10 hours. Keys implores the group to speak up if anyone ever sees her son without the bag holding the spare batteries. "He has all kinds of excuses: It's too heavy, and whatever," she says.
After the training session, Najjar reflects on the thoroughness of the school staff's questions and engagement. "I think it's very courageous of the school to take him back without hesitation," he says.
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Savoy's recovery is still largely managed by Keys, who was an unskilled mother on welfare when Savoy was a toddler. After completing a workplace training program, Keys, 46, was hired as a clerk by the Environmental Protection Agency in 1997. She has since been promoted eight times and is now a program analyst for the EPA. She is a quick study and an overprotective parent, she says.
"I never did let him just go hang out on the street," she says. When she was a child, Keys said, her family was repeatedly evicted from apartments, so she has relished the stable home life she has created for Savoy, his 14-year-old sister, Shakema Williams, and Shakema's father, Steven "Kemo" Williams.
Keys made sure that Savoy and Shakema always had yearly physicals, including an unremarkable one last January. Since Savoy's surgery, she has had an even harder time letting him go anywhere without her. The first time she did was a couple of weeks before Christmas, when she allowed him go to a mall with a buddy.
"Mom, you've got to let me grow up; I'm not a baby," Savoy says to her, a little embarrassed, as she explains her fears. But then he puts his arm around her, as he does constantly, betraying their extremely close relationship.
For the most part, Savoy can do many of the things he used to do, but there have been some adjustments. He doesn't have to do anything special to protect himself from the typical colds that are found at school, but he has to eat a more healthful, low-sodium diet with more vegetables. He can't do too much physical activity because it might disrupt the power connection of his LVAD or affect his incision. Just taking a shower requires special equipment to protect the batteries; he can shower only twice a week. And to make sure his batteries don't fail while he sleeps, Savoy can't let himself doze off without attaching his LVAD to a machine that's plugged into a wall outlet in his bedroom. He misses taking naps on the couch.
"But what I miss the most is being able to walk around without carrying anything, and not having to worry about anything else," he says.
Getting back to school has been a major goal, and on his first day back he couldn't wait. "I didn't sleep at all last night; I just wanted to get up and come here," he said while walking through the hall between classes.
Savoy wasn't fazed by the extra attention he got that day. His mother stayed for the first three hours, attending his classes and explaining his condition to the students. By the time she left, he had slipped back into his old self, chatting and joking with a constant stream of friends, especially girls.
"I'm happy he's back at school; he wants to be normal and have a normal life," Keys said as she walked out of the building. "It's hard for me, but I have to let the boy go."