Artificial Heart Kept Mesa Teen, Hope Alive

Stephanie Paterik

The Arizona Republic

February 6, 2004

TUCSON - Sixteen-year-old Alex Rowe can tell you which Xbox video games are worthwhile, what happened on the last episode of SmackDown! and what it's like to wake up and discover you don't have a heart anymore.

Alex, of Mesa, became the youngest person in the world to receive a total artificial heart in October at University Medical Center in Tucson. The device kept him alive for two months until he got a human donor heart in December.

He has received national attention, appearing alongside heart surgeon Jack Copeland on Good Morning America and ABC World News to discuss the CardioWest Total Artificial Heart. The technology is made by SynCardia in Tucson, and its developers hope it will finally get U.S. Food and Drug Administration approval this year. And Alex may end up in the Guinness Book of Records for undergoing the surgery at age 15.

But what he wants most is just to go home and get back to the life his failing heart interrupted.

Living In Isolation

Alex sprawls out on a couch in his apartment at the Ronald McDonald House in Tucson, where ailing kids can stay with their families for $10 a day.

"This is it," he says, waving a hand around for the grand tour. Clothes are strewn about, a video game controller sits within easy reach and photos of his mom, dad, brother and four dachshunds line the shelves.

Alex's gaze doesn't leave the television screen.

"Lino taped wrestling for me," he explains happily as a burly blond man strikes a muscular pose on the screen. "I can't get cable here."

This is the most animated Alex has been all day, and for good reason. His new caretaker, Rosalino Ahumada, who hangs out with him on Thursdays when his parents can't be here, also happens to love wrestling.

Cable is just one luxury Alex has given up since moving here. He takes more than 30 pills a day to suppress his immune system and keep his body from rejecting the donor heart, which means living in an "isolation room" away from other kids and avoiding crowds.

Richard and Vicky Rowe, his parents, take turns commuting from Mesa to be with him. If Alex's weekly heart biopsy shows no signs of rejection, he goes home for the weekend.

"He lives for the weekend," said Richard, 56. "It's really hard to keep a teenager entertained. He's basically bored out of his mind."

Still, his parents try. Dad takes him out to favorite restaurants, like Red Lobster. And Mom takes him to movies when the theaters aren't too crowded, even if it means seeing the motorcycle flick Torque.

If all goes well, Alex will go home in mid-March. The Dobson High School student has been out of class since August.

Road To Recovery

Sitting in a doctor's office the next day, Alex puts down a video game magazine and lifts his T-shirt, revealing a long pink scar down the middle of his chest and circular marks where tubes once connected the artificial heart to a generator.

"Looks like everything healed up," Dr. Raj Bose says. Alex nods, drops his shirt and picks up the magazine.

His dad, who drove in from his job as an Arizona Department of Corrections physician, enters the room with Alex's morning pills and a bottle of apple juice. He cheers on his son - "that a boy" - as Alex swallows several capsules at a time in a perfected ritual.

"Are you going to join the high school athletic department?" Bose asks, making pleasant small talk.

"No," Alex says.

"Why not?"

"I have muscular dystrophy."

"Oh," Bose says. "That's right."

Alex was diagnosed with a mild form of the disease at age 5 after his parents noticed him stumbling and struggling to run as fast as other kids.

"That was a serious blow when we found out," Richard says.

At 6 feet 2 and 205 pounds, Alex says he wishes he could play football. But the disease stopped him from participating in sports as a kid. And the summer before his freshman year, it started attacking his heart.

Dying In Front Of Mom

It began with nausea. Then fatigue, breathlessness and weakness set in last July. In August, just as he was starting high school, he became bedridden. Muscular dystrophy had weakened the muscles of his heart, and he was fading fast.

Alex's parents took him to Banner Desert Medical Center in Mesa, where Vicky works as an emergency-room nurse. He was transferred to Phoenix Children's Hospital, and from there an ambulance took him to UMC in Tucson.

Vicky, 50, said she had a gut feeling her son was gravely ill. So when the hospital prepared for a routine procedure, inserting a catheter to give Alex stronger medicine, she asked that it be done in a lab with an anesthesiologist and full equipment on hand.

"He arrested," she recounted. "I was in the waiting room, and I knew something was wrong, so I insisted on being in the room. When I walked in, they were doing CPR."

Alex's dad got the news while he was at work in Phoenix.

The Rowes were faced with a decision: The surgeons could put Alex on a machine that would pump the blood outside the body, or they could remove Alex's heart entirely and replace it with the total artificial heart, developed in 1993 but still not FDA-approved.

The decision was easy at the time, Vicky said. The surgeons recommended the artificial heart, which young people rarely get because their bodies are usually too small.

The hard part was explaining the decision to Alex, who awoke from surgery with no recollection of the day's events.

"He didn't believe us," Vicky said. "We had to keep telling him over and over, and he finally accepted it."

Alex said the pain and the tubes jutting from his chest helped convince him. "I felt bad for my parents. I basically died right in front of my mom," he said. "But I got saved."

A Heart For Alex

Alex calls out to his trainer while pedaling a stationary bike in the rehabilitation center.

"Hey, Rob," he says with a smile, nodding discreetly toward a television screen. A daytime talk show is featuring full-figured lingerie models.

Like any gym, the room is lined with bikes, treadmills and TVs. It also is equipped with heart monitors and resuscitation equipment.

On Dec. 9, just two months after getting the artificial heart, Alex was given a human heart through the Donor Network of Arizona.

The new heart freed him from the unfamiliar pumping sound that came from his chest and the 350-pound generator he was attached to.

Now that Alex has a new heart, which doctors say won't be affected by his muscular dystrophy, he wants to drive next year. "We'll deal with that when we get to it," Richard said.

Some people wait years for a donor heart, said Copeland, who will help pitch the artificial heart to the FDA in Washington, D.C., next month. A low organ-donation rate nationwide is driving artificial-heart technology.

"I think a lot of people are dying that could be saved by the device," Copeland said. "There really isn't another device that could have saved (Alex). His heart was so bad. . . . I don't know how he managed to stay alive."

Going Home

Breathing hard, Alex steps off the stationary bike and shuffles over to his dad.

"Thirty-five minutes," Alex says modestly.

"That's the best yet!" his dad exclaims, and the two tap fists.

After receiving his new heart, Alex was so weak he had to be helped onto the bike.

The new heart has shown signs of failing twice, but this week his biopsy is good; he can go home for the weekend.

"I'll play with my dogs, hang out with my friends, watch football," he says.

When he moves back home for good, it will be as a new person, his parents say.

"I tell him, 'This is part of your destiny,' " Richard says. "I really believe this kid has a purpose."

Alex is considering speaking to his school about the importance of organ donation. And he has started mentoring another 16-year-old boy in the hospital who is waiting for a new heart.

"I think he has a little bit more self-confidence," Vicky says. "Otherwise, he's the same happy-go-lucky, curious, funny boy. Or young man, I should say. He's not a boy anymore."

This article posted February 21, 2004.