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.