One Fall Could Kill Toddler with Heart Defect

July 3, 2008 — -- For 20-month-old Adrian Raheal, a rare birth defect could turn an otherwise minor stumble into a fatal accident.

Because Adrian was born with ectopia cordis, a condition that causes his heart to protrude from his chest, any sudden impact to the heart could kill him, said his father, who told ABCNEWS.com that he lives in constant fear his son will be injured.

"Look at it this way, every time I blink my eyes I have to worry if my son will fall within that blink," said Steve Raheal, Adrian's father. "I worry because when I blink it could be the last time I see my son move – it's very hard."

In addition to the birth defect, doctors identified another potentially fatal problem: Adrian has a hole in the cardiovascular wall between the two upper chambers of his heart, his doctor told ABCNEWS.com.

Today, almost two years after being told by doctors that his first-born son would not even survive childbirth, Raheal has come to Miami, Fla., from his home in Trinidad – where doctors were unable to help and even misdiagnosed the hole in Adrian's heart – in hope of a cure for his son.

Because Adrian is not a U.S. resident the public hospital cannot use taxpayers' money to cover his treatment. So Raheal, who came here with the help of the International Kids Fund, is hoping the group will help him raise $85,000 to pay for the extensive surgery Adrian needs to survive.

Without the operations, doctors told ABCNEWS.com that the toddler's chance of survival would be severely compromised.

Unique Surgery to Patch Boy's Heart

Dr. Eliot Rosenkranz, the cardiothoracic surgeon at the University of Miami/Jackson Memorial Medical Center who is treating Adrian, told ABCNEWS.com that the combination of surgeries he plans to perform on the boy has never been done before.

Rosenkranz explained that he will use a catheterlike device to correct the hole in Adrian's heart first and after a few days of recovery will tackle constructing an enclosure for the organ.

"We can usually pull together a portion of the lower chest wall and oftentimes we'll take a portion of the ribs and make little grafts to bridge the gap," said Rosenkranz.

Rosenkranz's method is less risky than the way these kinds of cases have been handled in the past – often putting small children, sometimes even infants, under the stress of open-heart surgery and consequently making the entire procedure more dangerous. Rosenkranz believes that the new combination he plans to use on Adrian will virtually eliminate the risk of the surgery.

The cause of ectopia cordis still remains a mystery, with only eight in every one million children being born with the condition, Rosenkranz said.

"I've been doing [heart surgery] for a little over 20 years and I've seen about five cases like Adrian's," said Rosenkranz, who added that one of the reasons he decided to go public with Adrian's situation was to help increase public awareness about the condition. "Like many congenital problems we don't know the exact cause."

Not having the surgery may actually be far more dangerous than actually having it, according to Dr. Irving Kron, the chairman of the department of surgery at the University of Virginia and an American Heart Association spokesman.

"It's an important surgery," said Kron, who in 25 years in this field of medicine has only seen two cases like Adrian's. "If Adrian didn't have it done, it would limit his life span."

Adrian's Heart Beats On, Waiting For Help

Adrian's father, whose pregnant wife stayed behind in Trinidad on doctor's orders, said that while he's hopeful his son will get the surgery he needs, every passing day poses new challenges.

For one, as Adrian grows and gains weight, any potential fall becomes that much more dangerous, said Raheal.

"As Adrian gets bigger [a fall] will be a much stronger impact on his heart," said Raheal.

Similarly, Adrian's doctor, Rosenkranz, said that the type of intricate surgery Adrian needs becomes more challenging as the child ages.

"It's much easier if this surgery is taken care of, from a technical point of view, the younger the child is," said Rosenkranz. "Their [chest wall] is more flexible then."

And while Raheal and Rosenkranz say that Adrian isn't in any pain, his father believes that the toddler is starting to realize that he is different from his peers.

"He saw another little girl lift up her shirt and saw that she does not have what he has," said Raheal. "It made him curious."

"He just kept putting his hand over his heart," he added.