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Have Faith ... and Pass the Tissues

January 19, 2010 - Phyllis Sigal
Having given birth to two healthy bouncing babies a couple of decades ago, I know how wonderful it is to have trouble-free pregnancies.

There is always the worry — will everything be all right? When asked the question, "Do you want a boy or a girl?," the stock answer for so many is, "It doesn't matter. As long as the baby is healthy."

But I can only imagine the pain and fear that WTAE-TV news anchor Kelly Frey and her husband, Jason Luhn, went through as they heard the prognosis of little Bennett Ryan Luhn, several months ago.

I heard Frey and her husband share their story Saturday with their congregation at the North Way Christian Community in Wexford, Pa., just north of Pittsburgh, where my daughter Amanda works as Ministry Coordinator for Adult Life. 

The service was part of the "Fearless" series, a series that reflects on living your life with faith, not fear.

And with faith is exactly how the couple lived the months before Bennett was born — alive, breathing, crying.

Not at all what they expected after an ultrasound found that Bennett's skull was filled with fluid. The diagnosis was holoprosencephaly. The prognosis was grim. It was possible that his face and brain would be very malformed; he could have been born without a nose. 

In many severe cases, the baby miscarries.

That was what Kelly had said she was praying for — "which sounds awful to say," she noted. But most doctors were recommending the couple terminate the pregnancy. 

They struggled with the choices. They didn't want their baby to suffer outside the womb. "We didn't want to see him suffer for one moment." But they were opposed to abortion.

However, they finally came to the conclusion that they would end the pregnancy. But they were still waiting for a sign from God that would change their minds.

That sign came the day before the procedure was scheduled — the week before Mother's Day. Kelly was outside whacking weeds, when a call came from her insurance company. The insurance would not pay unless the mother's life was at stake.

That was enough for them ... "the lightning bolt moment we had been praying for," she said. Of course it had nothing to do with the insurance; and everything to do with the life of their son.

She continued to carry little Bennett. Subsequent ultrasounds documented his progress. He had a nose. He had eyes. A mouth. Fingers and toes. He had a heart — with four chambers. He was a he. But his head was enlarged from the fluid, and at 35 weeks, it was time for the Cesarian section. 

They wanted to keep him inside as long as they could, so that his lungs would develop as much as possible. They were told he wouldn't breathe on his own.

And they also knew — at least they thought at the time — that the day of his birth would be the day they would say good-bye. She weeped as she shared the memory.

They said there was a peace and calm as they drove to the hospital. "God was in the car with us. God went into the hospital with us. ... We were going in to meet our son."

And then came baby Bennett. Jason said he was shocked when the doctor handed the newborn to him; they expected him to be put on a ventilator immediately — long enough to say their good-byes. 

There he was, breathing, crying, all on his own. The joy was overwhelming; that joy was beautifully captured in a photograph we witnessed Saturday night of the new dad holding his baby. The church audience applauded at the sight.

Doctors have ceased trying to offer explanations. 

"Bennett is writing his own book," Jason said, of his son, who's beating the odds.

Kelly and Jason's faith have kept them going. It was their church they turned to the day of the diagnosis. And it was the invaluable prayer offered by the church community that helped them through the pregnancy and the four brain surgeries in the three and one-half months since Bennett's birth.

While the future is uncertain and challenges on the horizon, one thing for certain is their faith.

And this, from Kelly, "Whether or not he had survived that day, it was all worth it."


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