David Trinko: Elida grad credits Santorum’s advice with saving daughter’s life

ROCHESTER HILLS, Mich. — You hear a lot of advice when you're the parent of a sick child.Try this treatment. Call this doctor. Accept the possibility of death.For 1989 Elida grad Brad Smith, the words coming out of Rick Santorum's mouth back in the fall of 2010 sounded like more of the same. He'd heard from a lot of doctors, friends and others in the short life of then-22-month-old Faith. She was born with Trisomy 18, a birth defect claiming the life of most children born with it.Santorum knew more about this than most. After all, his daughter Bella was also born with Trisomy 18. Still, Smith's eyes glazed over as the former Pennsylvania senator rattled off a to-do list on his way out of Salem Communications, where Smith works in Detroit.Then Santorum said the words that Smith said saved his youngest daughter's life.“He stopped, looked me in the eye, and said, ‘If you don't do this, you're going to lose your daughter.' That'll grab your attention very quickly,” Smith said.Smith's boss grabbed a pad of paper and began writing down the treatments Santorum tried for his daughter, who also was born with Trisomy 18. Smith took those jotted notes to the University of Michigan's C.S. Mott Children's Hospital. His family now had a game plan to save Faith's life.“It was life-saving advice,” Jesi Smith said. “It was a gift from God. We didn't know what to ask for until Sen. Santorum helped us.”• • •Faith was a name Brad and Jesi Smith wanted to avoid, really. The couple, who wed 14 years ago and now lived in suburban Detroit, already had daughters named Grace and Hope. Faith would've felt like a cliché. Jesi Smith pushed for Lilly at the time.Then a fateful ultrasound showed the unborn child might have problems. Doctors recommended amniocentesis, a test that could detect genetic disorders. The Smiths said no. They held firm in their beliefs that abortion would be wrong, no matter what issues their child might have.Brad's mother, Evelyn Smith, of Lima, and his sister-in-law told them they prayed for their unborn daughter. It was easier for them to give her a name, so they referred to her as Faith.Faith Victoria Smith was born with Trisomy 18, also known as Edwards Syndrome. Half of the children born with it die in the first week. Just 10 percent of children born with it live past age 1, and those are often sickly and developmentally disabled, according to the U.S. National Library of Medicine.“It's a chromosome abnormality, where you have three of the one chromosome instead of two,” Brad Smith said. “I'll tell people Down Syndrome is Trisomy 21. Trisomy 18 is harsher. With Trisomy 18 children, without the hand of God intervening, they're likely to not live long.”When she was born, Faith's eyes rolled constantly, Jesi Smith said. She didn't make a sound while crying. She barely moved. Faith also had three holes in her heart and could barely breathe.“Basically, they sent us home to let her die,” Jesi Smith said. “We weren't sent home with oxygen, so she was panting. There were large holes in her heart and we needed to see a cardiologist. There was not a lot of hope. We weren't getting seen by the right doctors. There was no game plan leaving the hospital.”• • •The Smiths bounced around to different doctors and different hospitals, hoping to find the people who could help her most. They eventually found a team more open to working with Trisomy 18 and fighting to keep Faith alive.“You back a lot of doctors into the corner and tell them how much you love your daughter, how much you want to see her do well tomorrow,” Jesi Smith said. “You tell them some day you want to dance at her wedding. A lot of doctors glaze over at that and think you don't know how serious it is. I am her nurse; I know what's going on.”They found some support in the oddest of places, a Republican dinner for a friend in the spring of 2010. Santorum spoke at the event, and he gravitated toward the Smiths. With any childhood disease, parents want to talk to other parents who understand what they've gone through.When Santorum went up front to speak at the event, he left Jesi Smith with his Blackberry to talk to his wife about their experiences.“What candidate gives you his phone to talk to his wife?” Jesi Smith recalled, laughing. “We spent so much time with it, the person running the event, who we know, was really sweating it. Santorum just kept coming back to the table. He couldn't pull away from us. He was just like us, so happy to find somebody else who you could talk to about it.”• • •That's why Brad Smith felt comfortable approaching Santorum that day in the fall of 2010. Santorum just finished filling in for the nationally syndicated radio show “Bill Bennett's Morning in America.”“He was on his way out,” Brad Smith said. “I grabbed him. I said, ‘I'm dealing with this. Faith's in the hospital again. Is there anything you can suggest?'”Santorum had a lifesaving lift of things to do. Some were as simple as having a breathing machine at home to help with her sleep apnea. Others were more complicated, like the jaw distraction surgery which helped open up Faith's airways. “If not for Rick Santorum, my daughter would not be alive today,” Brad Smith said. “To me, that as the hand of God to put him where he was, to help us.”• • •Faith is 3 years old now. She has an infectious grin that shows her love of life.“She moves around a lot now, grabbing toys and laughing,” Jesi Smith said. “There are times when she has medical issues still. Special needs kids endure more than most, but she more than makes up for that in happiness and love of life.”Her four siblings protect her, and the family's life is richer because she's there, Brad Smith said. It confirms their decision to bring her into the world.“It's frightening to me that some people would think Faith shouldn't be alive and we're horrible people to bring her into this world,” he said. “We run into that. Then with people like that, they see other little kids and other children treating Faith so well. It's like pouring heaping coals on their heads. You can see that it makes the people feel bad for not being more understanding.”But Santorum understands. The Smiths saw him again last weekend in Troy, Mich., during a campaign event leading up to the Michigan primaries. When the presidential candidate saw these voters, the first words from his mouth were, “Where's the Purell?” as he understood the importance of being sanitized.Then he grabbed Faith and held her for most of a 15-minute visit with the Smiths.“It's amazing he would spend that much time with us, knowing all the things he had to do that night,” Brad Smith said. “But knowing Rick Santorum, it's not surprising at all, based on past experience.”