Kelly Frey wept at times as she recalled the medical prognosis that her unborn child would live, at most, a few hours or days.
But her tears streamed past a glowing smile last night as the WTAE-TV news anchor and her husband, Jason Luhn, took turns holding their son, now 3 months old, in their arms while they told their story to their church.
"We have seen an awesome God, who is the same now in doing miracles as he was thousands of years ago," Mr. Luhn said.
Baby Bennett Ryan Luhn, dressed in a red plaid shirt and jeans, slept through his parents' interview with the Rev. Jay Passavant during the service at North Way Christian Community's main campus in Pine. Other than a television interview in November, the couple had not spoken publicly about their son since his birth. They will speak again at the 9 a.m. and 11 a.m. services today.
Bennett was temporarily using oxygen due to a reaction to medical treatment -- he has had four surgeries to drain fluid from his brain -- but colorful toys were waiting on a table nearby in case he woke up.
The baby who in the womb was diagnosed with a severe form of holoprosencephaly -- a major defect of brain formation where, instead of normal tissue, the skull is filled and distended with extra cerebral spinal fluid -- now can grasp objects like any other baby, and can see and hear.
But it will be a long time before it's clear how well his brain will process that information, his father said after the service.
Bennett's brain, which had been squashed by excess fluid, has expanded 40 percent since his birth, though a large cyst remains in the back. He sees many specialists, and therapists visit their home to try to help him develop new neural pathways to replace damaged or missing ones.
The couple has belonged to North Way church for nearly a decade. Ms. Frey told their story publicly during her pregnancy, trying to explain to the entire city that she was pregnant but that the birth would be followed quickly by a funeral.
Her first ultrasound had been normal, but doctors wanted a second one due to her age, then 36. She and her husband knew something was wrong when the technician left the room to consult the doctor, and they prayed together before the doctor came in to say that their baby's skull was filled with fluid where a brain should be developing.
They drove directly from the hospital to their church -- North Way's satellite campus in Oakland -- where the Rev. Mike Arnold also prayed with them.
The days that followed were filled with dire prognoses. Nearly every specialist they consulted recommended that Ms. Frey have an abortion because her child had no chance of survival, she said. Internet searches on holoprosencephaly said he might be born with one eye or other horrendous deformities.
Ms. Frey said she felt, "devastated, crushed." She didn't want to contend with countless viewers congratulating her on an obvious pregnancy. And, above all, she didn't want her baby to suffer -- a prediction raised by everything she read and heard.
Although she and her husband had been opposed to abortion, she said she scheduled one, all the while praying that she would first miscarry or that God would intervene.
When their medical insurance company called to say that the procedure wouldn't be covered unless her life was in danger, Ms. Frey said she and her husband took it as a sign from God. On the day she was supposed to have had the abortion, she had another ultrasound. She felt a new calm, she said.
From then on, "we took joy in the pregnancy," Mr. Luhn said. In subsequent ultrasounds, "he was kicking around, doing all the [normal] things."
Because Bennett's head was large, he was born by cesarean section. Although she said she had been told her son wouldn't be able to breathe on his own, Ms. Frey waited as long as possible before the delivery to give his lungs time to develop. She and her husband planned to keep him on a ventilator for a few hours so they and their relatives could spend time with him before he died.
When she went to the hospital at 35 weeks, "it was so hard ... to know that would be the day we would say goodbye," Ms Frey said, weeping at the memory. Nevertheless, they told the medical team at UPMC Mercy that they wanted his birth to be a celebration, a true birthday.
Doctors had prepared them for many contingencies -- all of them grim. So Mr. Luhn was shocked when, immediately after Bennett's birth, a doctor handed the baby over to hold. The church video screen flashed a picture of Mr. Luhn holding Bennett, an expression of pure joy visible above his surgical mask, as he thanked God for a child who was not only breathing on his own, but crying vigorously.
Ms. Frey said she would rejoice in her son's birth no matter how long he lived.
"Whether or not he had survived, the day, it was worth everything," she said, breaking up again as the congregation applauded.
Doctors have given up trying to explain Bennett's progress, Mr. Luhn said.
"They quit trying to prognosticate a long time ago. They said that he's writing his own book."
Ann Rodgers can be reached at email@example.com or 412-263-1416. First Published January 17, 2010 5:15 AM