Santorums discuss 'Bella's Gift,' their book about disabled daughter

Not long before Thanksgiving 2011, at a forum in Iowa where the moderator challenged Republican presidential candidates to "bare their soul," former Sen. Rick Santorum of Pennsylvania said he had not always loved his youngest child as fully as he should have.

Isabella Maria - "Bella" - was born with an extra chromosome in every cell, a rare genetic disorder known as trisomy 18, and doctors told her parents the condition was "incompatible with life."

"I decided that the best thing I could do was treat her differently . . . because it wouldn't hurt as much if I lost her," Santorum said, choking back tears. "I had seen her as less of a person because of her disability."

Now, Bella is 6. She was waving good night in a video on Santorum's iPhone Monday night in Exton, where he and his wife, Karen, were about to sign copies of their book, Bella's Gift. The Santorums wrote it together, in 18 chapters. It is about the struggles and the joys of raising a profoundly disabled daughter.

"There is a joy you can't put into words," Karen Santorum said Monday. "Anything in life that's worth something is hard. I look at Bella and I say she's a little girl with a big message: Every life is precious. . . . There really is a tendency to view people in terms of what they can or can't do."

Even though she cannot talk or care for herself, Bella has a life with meaning and contributes her love to the family. Rick Santorum said that Bella is a "great teacher" about what is important: love.

"Bella is happy every day," he said. "She greets you with a smile and is happy just to be with you."

He said he was transformed when Bella was on a gurney in the emergency room when she was younger, slipping away. She grabbed his finger, hard. "I thought, how could I not, how could I not give her everything?" Santorum said in an interview.

"He saw that, although he had gone through the motions of fatherhood, he had hardened his heart out of fear," Karen Santorum wrote in the book. "Ever since that day, Bella has had Rick wrapped around her little finger."

Rick Santorum said he took a stoic's stance because of the pain the couple suffered in 1996 when they lost a son, Gabriel, shortly after birth. He did not want to go through that again and accepted whatever would happen, he said, as God's will.

He "was at peace whether Bella lived or died, and that broke my heart," Karen Santorum wrote. The two wrote alternating chapters in the book.

Rick Santorum, a Pittsburgh native, was elected to the Senate in 1994 after serving two terms in the House. He was defeated for reelection as a senator in 2006, and works as the chief executive of EchoLight Studios, which specializes in creating faith-centered entertainment, as well as making paid speeches.

Bella's Gift, released as Santorum prepares for a second White House bid, is not a typical campaign book of grand visions for the country, partisan arguments, or policy proposals. It's raw and personal.

It also varies from Santorum's most recent political message. He has said that he would pivot from the social issues, such as abortion, that made him a national figure to economic concerns in a possible 2016 run. Indeed, Santorum wrote Blue Collar Conservatives last year, an extended argument that the Republican Party needs to address itself to the concerns of strapped middle-class voters and problems of income and wealth inequality.

The new book broaches the ongoing debate about the morality of abortion, which many families consider when faced with a diagnosis like Bella's.

"I don't even worry about that," Rick Santorum said Monday, speaking of the contradiction. "The book came out when it was ready to, when it had to."

He said that a big part of his motivation in running for president in 2012 was to oppose the Affordable Care Act. He and his wife say that when it is fully implemented, it will lead to health-care rationing and the withholding of treatment from the disabled.

Supporters argue that the law has helped families with disabled children. It ended insurance companies' ability to deny coverage to people with preexisting conditions and barred them from imposing lifetime caps on the amount of treatment they will reimburse.

When she was 10 days old, Bella was sent home from the neonatal unit on hospice care, which is designed to make those with terminal illnesses more comfortable.

"Care for the dying for our newborn baby - a painful paradox," Karen Santorum wrote.

Santorum, who won the Iowa caucuses and, ultimately, primary contests in 10 other states in 2012, had to suspend his campaign briefly in February when Bella was deathly ill with pneumonia and was being treated at Children's Hospital of Philadelphia.

After she recovered and he returned to the trail, he was greeted everywhere he campaigned by families with their disabled children - there was a connection. Santorum lost to Mitt Romney, but that bond has continued.

When her daughter Alyssa was born with trisomy 18 six years ago, Trish Shihadeh of Coatesville said, she was told the same thing the Santorums were: The girl likely would die soon.

"We were not ready to accept that," she said.

On Monday, Shihadeh brought Alyssa and her sisters, Jessica and Leah, to the Barnes & Noble store in the Main Street development. Shihadeh wanted a copy of the book, and to meet the couple whose story had been encouraging to her.

Karen Santorum knelt to embrace Alyssa and said she hoped the girl could meet Bella someday.

The Santorums "are kind of our poster child, our voice - for all disabled children, not just for those with trisomy 18," Shihadeh said. "We've had a lot of hurdles, but we have to keep the faith and persevere."