Child’s rare disease causes family to ask for help

CARLTON, Mercer County — Kyle Bennett is a 4-year-old, and he looks and behaves as such.

It’s all shy smiles at first, then he opens up to show you what he’s into — kid stuff like his puppy, fishing with Dad, games, Scooby Doo … and more Scooby Doo.

Kyle can also show you where his doctors recently placed a pacemaker to regulate the abnormal rhythm of his heart.

On Christmas day 2004 — almost immediately after his birth — Kyle’s parents, Crystal and Scott Bennett, learned their son has the severe heart defects that make up tetralogy of Fallot with pulmonary atresia.

Within an hour of coming into the world, he was life-flighted to Children’s Hospital in Pittsburgh. At three months, he had his first open heart surgery.

Since then, Kyle’s heart — about the size of his tiny fist — has endured three more open surgeries and seven catheterization procedures in an effort to correct the defects.

And, his parents said recently, that’s the point where doctors in this part of the United States have said they’ve reached their limit in terms of what can be done for Kyle. From there, Crystal and Scott were told, they could wait and put hope in the off chance that Kyle may survive long enough to grow strong enough to eventually survive a full heart and lung transplant.

Thankful for what those doctors had already done but not willing to accept that prognosis, the Bennetts recently began seeking out second, third and fourth opinions. In doing so, Kyle’s case was brought to the attention of medical staff at Stanford University Medical Center in California.

Now, the Bennetts said, one highly specialized surgeon there has very recently agreed to take Kyle as a patient and to perform potentially life-saving procedures offered but few other places around the globe.

Stanford “is offering Kyle the miracle we have prayed for so long: a chance to live, and even live a mostly normal life,” Crystal said. “So we go to California.”

But they need help to make that happen.

“To do this, we must go to California and basically relocate twice for weeks or months at a time,” according to Crystal. “We are not only facing the costs of airfare, lodging, food, transportation and personal needs, but also some or even all of the procedure costs due to California not having to accept Kyle’s insurance type and the insurance not covering certain procedures like this.

“Needless to say that no matter what, we are looking at expenses far beyond our means and savings.”

The family is now putting out a call for monetary donations — any and all will help — in order to get Kyle the care he urgently needs. A benefit fund has been established through Northwest Savings Bank.

Also, a benefit sale and raffle is planned for June 27 at the Knights of Columbus building off Interstate 79 near the Grove City Prime Outlets exit. The Bennetts said they’re currently seeking out crafters and others who may be interested in donating items for that event, which they said was set at the high-traffic Grove City-area location to hopefully attract a high number of visitors.

“This is his chance,” Crystal said.

You can help

Donations to help fund the life-saving heart procedures recently made available to 4-year-old Kyle Bennett through Stanford University Medical Center may be mailed or dropped off at any area Northwest Savings Bank branches. Deposits should be made out For the Benefit of Kyle S. Bennett, Carlton, Pa.

Also, a benefit sale and raffle is planned for June 27 at the Knights of Columbus building off Interstate 79 near the Grove City Prime Outlets exit. That event is planned to start at 9 a.m.

What is Tetralogy of Fallot with pulmonary atresia

Four-year-old Kyle Bennett of Carlton was born with Tetralogy of Fallot with pulmonary atresia, a potentially fatal set of heart defects.

Tetralogy of Fallot is a congenital heart defect involving four anatomical abnormalities that can result in reduction of bloodflow to the lungs; a mispositioned aorta; a hole between the two bottom chambers of the heart; and an overdeveloped right ventricle.

Pulmonary atresia is a congenital malformation of the pulmonary valve; the valve is completely closed, obstructing the outflow of blood from the heart to the lungs.

Before the advent of modern surgical techniques, less than 5 percent of those born with such defects reached 25 years of age. Now, however, operable patients with access to necessary procedures — such as those being offered to Kyle through Stanford University Medical Center — show long-term survival rates reaching roughly 90 percent.

© 2009, The Meadville Tribune