Boy's Broken Heart Tests Doctors and Family

Aug. 12, 2009 — -- Four-year-old Aaron Tanner's mother knew he'd be fighting for survival even before he was born. Now she's proud her "spitfire" blond boy took on a fighting spirit, even if it means he challenges the nurses who try to keep him alive.

"That first ultrasound, it's the one where they determined the sex. The doctor just noticed there was something funny with his heart," his mother, Elizabeth Tanner of Brentwood, Calif., said.

A few weeks and three ultrasounds later, the Tanner family were given the official diagnosis: Hypoplastic left heart syndrome, a rare congenital heart condition that affects one in 5,000 babies.

"We were really scared after the first couple of ultrasounds. They just kept telling us it was so bad and to think of the outlook for the rest of our kids and our family," said Tanner. "We couldn't really go there. God put him here, and we were going to have him."

Aaron's condition has tested little Aaron, as well as his entire family. As Aaron struggled to survive in his first few years, his father lost his job and the Tanners lost their 27-month-old son Ethan suddenly to an unrelated and often undiagnosed heart condition called hypertrophic cardiomyopathy.

"That was the biggest nightmare in the world... I was just a basket case with it for a while," Elizabeth said of the struggle.

Despite the heartache with the two youngest of their four sons, the Tanners pressed on through support from their church. They even had another child.

For his part Aaron has to take 10-12 medications every day while doctors work to find a way to save him.

Children who have hypoplastic left heart syndrome are born with an underdeveloped left half of the heart. Infants with the syndrome have a functional right half of the heart, which delivers blood blue to the lungs for oxygen. But as a result of the weakened left side, the heart can't pump the oxygen-rich blood to the rest of the body.

"He says that his heart is sick," Tanner said of her son. ""But he's the cutest, happiest little boy in the world."

"The nurses come in his room for a test, and he says 'no I don't want to do it,'" said Tanner.

Like other boys, Aaron is into Spiderman and other superheroes. But Tanner said his favorite song shows his unique circumstances -- "The Climb" by Miley Cyrus.

"That song sounds like his struggle," she said.

The condition was once universally fatal within hours or days of birth unless there was surgery, but Aaron already survived his diagnosis and three subsequent heart surgeries. Meanwhile, his parents overcame the death of Aaron's older brother Ethan and virtually all the calamities of the current economy: job loss, bad housing loans and foreclosure threats.

"We had perfect credit; we had everything before we had this. We had not a care in the world," Tanner said referring to the time before Aaron's diagnosis.

The Financial Struggle of a Medical Condition

Tanner said her family prepared for tribulations during her pregnancy with Aaron by downsizing and moving into a smaller home. The family "got what we thought was a good loan," only to discover large payments later on. On top of it all, Tanner said she had to quit her job to take care of Aaron right before her husband Mark Tanner, lost his job.

Now more than four years after the Tanners heard there was something amiss, doctors are still not sure what Aaron's fate will be.

This May, the Tanners learned Aaron needs a heart and kidney transplant.

"Since he's been born, I've never been able to work again," said Tanner, who worked as a real estate agent. "But right after he had his surgery last year, I went back to my broker and said I'm ready.

"Then Aaron was with me at work one day and he just started to throw up," she said.

Aaron was rushed to the doctor and diagnosed with kidney failure. Then, two weeks ago, Tanner got more bad news. The series of operations that were supposed to ensure his survival at least until the age of 18-20 had not stopped his heart from failing.

Tanner had to quit work again, although her husband had found a new job.

"[The cardiologist] said his heart function is completely shot. We need a heart transplant," Tanner said. "I cried the whole way home from the hospital."

Aaron had already survived the only three operations doctors try for his case -- the Norwood (now called the Sano), the Glenn and the Fontan. Each operation over his short lifespan helped to reroute the oxygen-depleted blue blood flow to the lungs instead of the weakened left half of his heart, then allow the right half of his heart to function as a makeshift pump.

With these three operations, doctors expect patients to live through their teen years before needing a heart transplant, but admit the procedure is no perfect cure.

"The right ventricle is now called on to be systemic pump for the rest of child's life, but it was never designed to be a systemic pump," said Dr. Hugh D. Allen, a pediatric cardiologist at Columbus Children's Hospital Heart Center in Ohio. "It's a palliative operation, not so much a cure as a situation that makes [his heart condition] better."

Surgery for Boy's Heart Condition No Cure, Doctors Say

"The long-term outcome is not certain. It's an evolutionary process where we're continually reevaluating what we're doing," he said.

Dr. Welton Gersony, a professor of pediatric cardiology at the Columbia University Medical Center in New York, agreed that there were no guarantees that Tanner's operation would succeed.

"Even in the best of cases you still have a very abnormal heart at the end, but one you can live with for a time," he said.

With all this adversity, Tanner said the family is just taking it one day at a time until they hear a page from the nearest transplant center at the University of California Los Angeles Medical Center, nine hours away from their home.

"If we get the pager and it goes off, we'll have to fly, I guess," Tanner said. "I don't know what we'll do, or where we'll stay. But as long as he gets what he needs, it's all good."

For more updates on Aaron's condition visit saveabrokenheart.com

ABC News' Radha Chitale contributed to this report.