Teen gets new heart, new life

HOOPESTON, Ill. — From the moment the problem was diagnosed in his tiny infant heart, Andrew Myers has never had a life like other kids.

There's been so much medicine and surgery. But no running or roller-coaster rides.

Now this 14-year-old Hoopeston teenager has a new heart, and with it, a chance for a whole different kind of life.

Andrew underwent heart transplant surgery earlier this month at Children's Memorial Hospital in Chicago and is doing “very well,” said transplant cardiologist Jeffrey Gossett.

“We've already got him up and walking around,” said Gossett, who is part of the team of doctors coordinating Andrew's care.

Gossett said he first met Andrew about a month ago when he evaluated him for a transplant. But Andrew's heart condition was first diagnosed when he was 6 weeks old.

Andrew had been having trouble breast-feeding, and doctors initially had him on antibiotics, thinking he was suffering from congestion. But then a pediatrician heard a telltale swishing sound in his heart that signaled an abnormality, said Melissa Myers, Andrew's mother.

Andrew was born with a condition called “double inlet left ventricle,” she and Gossett said.

Gossett said this condition means, in simple terms, that Andrew was born with a heart that has only one working pump rather than the two found in a structurally normal heart.

Surgical fixes for this condition worked for a time, but problems developed.

“What happened in the past is that they split the chamber to make the pump serve both the lungs and the body,” Gossett said. “They divided his pump in half, and it worked for a while.”

Over time, however, the single pump began to run into problems with the ability to pump all of Andrew's blood. Heart arrhythmia and heart failure issues developed, Gossett said.

Myers said Andrew — whose 15th birthday is coming up July 23 — was clearly breaking down in recent months.

On his third pacemaker since 2003, his appetite had decreased, and his energy was low, she said.

“When he came to see us, he said he couldn't even make it from one class to another without even stopping to rest. He couldn't climb stairs without being short of breath,” Gossett said.

Even more frightening, Myers said, Andrew's internal defibrillator had recently given him a shock.

Had the defibrillator not been in his body, Gossett said, he wouldn't have survived.

“That was the last straw. That made his cardiologist say at this point, we're not able to make his symptoms better,” Gossett said.

Time to check into a transplant.

About eight out of every 1,000 babies are born with a heart defect, according to Children's Memorial.

But pediatric heart transplants are relatively rare. There were a total 359 of these procedures done in the United States last year on youths under 18, out of a total 2,333 heart transplants for all ages, according to the United Network for Organ Sharing.

As of this week, 3,162 people in the United States are waiting for a heart transplant, according to that organization.

Andrew wound up waiting one week for a heart, his mother said.

“We were listed on a Wednesday, and he got the transplant the following Wednesday,” Myers said. “He was very high priority.”

Gossett said children can wait anywhere from a couple of days to six or eight months for a heart.

The match between the donor and recipient is based on the donor's and recipient's weights and blood types, he said. Age, race and gender don't matter, Gossett said, but hearts from people over 35 or so aren't used “because we know by 35 or 40, some of us have eaten too much McDonald's.”

What may have helped find a faster match for Andrew, Gossett said, is “he's kind of a small adult size, but it does open up a broader pool of donors.”

Had he been born 25 years ago, Andrew wouldn't have survived this long, Gossett said. Now, he adds, he expects to see a growing number of young adult heart patients with “kid problems” leftover from the heart surgeries they survived as infants and children, he said.

These are different kinds of heart problems than those adults develop later in life in a heart that is structurally sound to begin with, he said.

“It's going to be an increasing thing,” he said “We've got a lot more kids who are surviving.”

About half of donor hearts implanted in teenagers are still working 10 to 12 years later, Gossett said. What comes next for Andrew is keeping a close watch on him to make sure his body accepts his new heart.

Then he'll be monitored for rejection through biopsies and ultrasounds of the heart, and he'll be kept on lifelong medicines.

“We'll follow him forever,” Gossett said.

But it's not all about the medical care. The goal is to encourage pediatric transplant patients to have a healthy, active lifestyle, Gossett said.

“We let them do sports. We let them go on roller coasters,” he said. “Six months from now, I'd anticipate he'll have no significant limitations.”

For Andrew, that will be a big change, according to his mom.

“I was very protective. I wouldn't let him do a lot of things because I didn't want him hurt,” she said.

A trombone player in the band and a straight-A student, (despite missing 28 days of school last year) Andrew is an avid sports and magic fan who wants to keep pushing the limits, his mom said.

“He's a big sports nut, and it's been really hard because his sister plays all the sports. We let him do it in a limited way to keep him involved,” she said.

So Andrew could hit a baseball, but he had to have a designated runner, Myers said. He wanted to pitch, but he couldn't pitch all season.

“We let him pitch one inning, and he struck everybody out,” she said.

Myers said Andrew and his 14-year-old sister, Brittney, (not his twin) are very close, and it's been hard on Brittney to see him so ill, but she's doing much better.

Brittney will be staying with her grandparents in Hoopeston when the school year starts, because Andrew won't be coming home for some time and won't be able to come to school for the first six months of the new school year, Myers said.

How long Andrew remains in Chicago depends on quickly he progresses with his new heart, she said.

“Two months is a minimum time we'll be here,” she said. “They told us it could be up to a year.”

Further down the road, it's wait and see. Transplanted hearts don't last for life, but another heart transplant is a possibility for Andrew later, Gossett said.

He's optimistic about future options for young transplant patients.

“What we're hoping is we keep getting better and better at this, that we can keep a transplant organ alive longer,” he said.

Plus, technology such as artificial heart pumps are just in their infancy.

“My bet is that 20 to 25 years from how, they'll be a lot better,” he said.