Pittsburgh Mom Determined to Help Son

Resources are available for families facing catastrophic medical costs.

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.

Frey was determined to make sure Bennett got the best treatment he could. She scoured resource after resource and found a list of all the Web sites for non-profit organizations and federal and state agencies that could help her son. The result: the insurmountable financial burden weakened.

It turns out that a child who is disabled before the age of 22, can receive federal disability benefits at any age. Medical assistance and waivers are the most common source of funding to support kids with medical disabilities.

Various nonprofit organization provide state-by-state resources for parents searching for funding and support for their children.

"Every child is eligible for these programs," Frey said.

It hasn't been easy for the Freys: They have made too many trips to the hospital to count. But there has been unbelievable progress, thanks to early intervention and the help of community organizations that help children with medical disabilities.

Bennett's MRIs now show that his brain is growing. The biggest reasons for hope come when Bennett sits up or holds his head high.

"He is the most beautiful thing in the world," Frey said of her son. "We are just so thankful that we have him."

ABC Affiliate WTAE contributed to this report.

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