Pacemaker Gives Boy the Chance to Lead a More Independent Life

It's the first time this type of pacemaker has been used in Rochester

November 03, 2000

Chavez Russ hasn't breathed without the aid of a ventilator for three years, but the boy now has hope that he may once again breathe on his own.

On Wednesday, Chavez, who is paralyzed from the neck down, underwent a four-hour operation in which doctors installed a phrenic-nerve pacemaker. It is hoped the device will eventually allow the 7-year-old to breathe without the assistance of a ventilator and the battery needed to operate it, both of which weigh 40 pounds.

"A phrenic pacemaker is very much like a cardiac pacemaker," says Thomas Watson, M.D., a thoracic surgeon at Children's Hospital at Strong. "One of the major differences is that the surgery to install a phrenic pacemaker is more complicated."

Although the technology was first written about decades ago, the procedure to install a phrenic pacemaker is quite uncommon. Representatives from the manufacturer, Avery Laboratories, estimate only 100 are installed each year worldwide.

Until this week, children in Western New York traveled great distances - to cities such as Chicago and Los Angeles - to receive a phrenic pacemaker. Only a few medical centers in the country perform the operation with any regularity, including Children's Hospital of Los Angeles. That's where Watson and Heidi Connolly, M.D., a pediatric pulmonologist at Children's Hospital at Strong, traveled to study about the procedure.

"This could dramatically improve Chavez's quality of life by allowing him to be more independent," Connolly says. "He may be able to get places on his own that he never would have gone before without a great deal of assistance."

Installing the pacemaker is the first step in a long rehabilitation process for Chavez. After a short stay in the hospital, he will return to his Geneva home where more healing will take place. In a few weeks, he will return the hospital and the pacemaker will be turned on.

Then, Connolly will help Chavez retrain his lungs to breathe. At first, the boy may only be able to breathe with his pacemaker for perhaps 10 minutes day, but with practice, he could eventually breathe without the aid of a ventilator for much of the day.

"We won't know if we've achieved our goal for six months, but this gives Chavez hope," Watson says.

Physicians at Children's Hospital at Strong care for at least 50 local kids who rely on ventilators to breathe. A phrenic pacemaker is a viable option for some of them, and Watson hopes they'll be able to receive the pacemaker without leaving town.

"We'd really like to do more here," he says. "Whether it be for children or adults, we hope to offer this service to people from all over Upstate New York."

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