Pittsburgh Mom Determined to Help Son

Resources are available for families facing catastrophic medical costs.

ByABC News
May 15, 2010, 4:33 PM

May 15, 2010— -- Kelly Frey, an anchor for ABC News affiliate WTAE-TV in Pittsburgh, was 13 weeks pregnant with her son, Bennett, when she got the news that no prospective parent wants to hear.

"What we saw on that screen, the head area had just black," Frey said of the ultrasound.

A routine ultrasound in 2009 revealed a chilling vision: Where there should have been brain tissue, there was nothing, just black. The fetus was suffering from severe hydrocephalus, which is a buildup of fluid on the brain. Most people are born with the ailment or suffer from it after a severe head injury.

The trauma didn't stop there. Bennett was also suffering from Dandy Walker Syndrome, a congenital brain malformation of the cerebellum. The cerebellum controls movement.

The doctors told Frey and her husband, Jason, that their son had little chance of surviving past birth.

"It was the deepest grief we have ever known; they're telling us he is going to die," Frey said of the diagnoses.

The couple decided to continue with their pregnancy. They say that Bennett's birth is a miracle.

"We heard him cry, we just kind of looked at each other," Frey said. "My gosh, he's crying, he wasn't supposed to do that."

What followed was seven months of medical marvel and parental perseverance full of highs and lows. Bennett spent seven weeks in the neonatal intensive care unit. He went home for Thanksgiving but Christmas brought seizures.

A shunt was put in Bennett's head to drain the abnormal amount of liquid in his brain. The baby boy, now seven months old, has an exhausting regimen of treatment: occupational therapy, physical therapy and hearing, vision and speech therapy.

The costs for all this could be overwhelming. Some insurance companies consider the equipment needed for such treatment a luxury.