Over and over, Rick Santorum has watched the old video of himself at a presidential candidate forum in Iowa. He can read in his strained expression the struggle that was going on in his mind as he tried to figure out how to answer a challenge put to the Republican contenders: “Bare your soul.”
The shadow on Santorum’s soul was the memory of a time when he hadn’t loved his own child as a father should. Could there be a more grievous sin for a champion of the pro-life movement?
When his turn came to speak, the former senator from Pennsylvania choked on tears and described the birth of his youngest, Isabella Maria Santorum. She has an extra 18th chromosome in every cell of her body, a condition deemed by doctors to be “incompatible with life.”
Until Bella was 5 months old and near death on a gurney in an emergency room, Santorum said, he had deluded himself into believing that “the best thing I could do was to treat her differently and not love her” as he had his six older children.
He had put up his guard, convinced “it wouldn’t hurt as much if I lost her. I remember holding that finger, looking at her and realizing what I had done,” he said. “I had seen her as less of a person.”
The 2,500 religious and social conservatives who were in that Des Moines church three years ago sat in silence, captivated.
Which was not the reaction at his home in Virginia, where his wife was nursing Bella through another harrowing weekend.
Karen Santorum was livid that Rick had violated their agreement to keep the details of their disabled daughter’s condition out of the glare of his 2012 presidential campaign. Worse was the clumsiness with which he had done it.
“That is what was so hurtful. He expressed it in a way that it could be misinterpreted as him not loving Bella, when in fact he did, but he was grieving in the way that he did because he was deflecting,” Karen recalled in an interview alongside her husband.
The Santorums have written a raw and revealing book, “Bella’s Gift,” to be released on Tuesday. The couple say it was intended as a guide for other families in their situation, providing the type of support that they often found lacking.
“By accident, it’s almost a marriage book,” Karen added. “We didn’t sugarcoat anything. We just said it the way it was.”
Theirs has been a shared journey, but one in which they initially found themselves on different paths.
The Santorums each started with a different interpretation of God’s will. Hers was a conviction that providence had put a challenge before them, one that they should fight to overcome. His was an acceptance that it was out of their hands, and that they should come to terms with that.
He was out of step with others in his family as well. There was the time that Rick and his teen daughter, Elizabeth, were putting together a crib for newborn Bella. Rick told Elizabeth to save the box, in case they needed it to send the bed back to the store, because “we just don’t know how long Bella is going to be here.”
He wrote: “I wish I could take those words back, because I’ll never forget the way she looked at me, as though I had not only hurt her but condemned Bella myself. My feisty Lizzie grabbed the box and tore it up as she started to cry.”
“Bella’s Gift” is an unorthodox volume to put out as Santorum gears up for a second presidential bid.
It is not a campaign manifesto with 10-point policy proposals or grand visions for his party. And it is somewhat off-message, given Santorum’s declaration that he will pivot from social issues to economic ones for 2016.
The book takes him back to old territory — the morality of abortion — which is an option chosen by many facing what their family did.
“Bella gave me the ability to talk about the dignity of every human life without talking about abortion, because there is a bigger issue,” Rick said.
The Santorums wrote their chapters separately, often late at night in their bedroom. Karen got the desktop, leaving Rick to work on the laptop.
As of last week, he still hadn’t read some of the sections she wrote, not wanting to expose himself again to the feelings of that time. “It’s just hard. It’s tough to read sometimes. But I’ve read most of it,” he said.
Bella’s disorder, Trisomy 18, is a rarer, more lethal cousin of Down syndrome. Only half of those born with it survive a week; fewer than 1 in 10 make it to their first birthday.
Bella’s seventh birthday is three months away.
She will never walk on her own, or speak intelligibly, or dress and bathe herself. Yet Bella is a sunny child, a delight to her parents and doting siblings, Karen said. “She has a beautiful, joyful life. She is the happiest little girl I have ever seen.”
She also has advantages that many disabled children do not, starting with the fact that her mother is a former neonatal intensive care nurse who comes from a family of doctors.
Having set out to learn all she could about her daughter’s condition, “Karen’s more of an expert than 99.9 percent of physicians in this country when it comes to this issue,” Rick said.
The Santorums also had significant financial resources, thanks to his consulting practice, speaking fees and television appearances. The most recent tax forms they made public report an annual household income that hovered around $1 million in 2009 and 2010. The medical expenses that their insurance did not cover were about $50,000 in each of those years.
Victoria Miller, the founder of the Trisomy 18 Foundation, cautioned that there are limits to what even the most determined families can do for their children. Her son Isaac lived for 11 days in 2001.
“Parents say, ‘I did this one thing, it made all the difference,’ [or] ‘if doctors would just tell everyone this one thing,’ but that just isn’t true,” Miller said. “The reality is these are brief and fragile lives.”
“Whether to continue the pregnancy is one of many, many decisions parents have to make,” Miller added. “These are heartbreaking choices. If they can make these decisions in a thoughtful way — do it out of love — they can live into the future and remember their child’s life with few regrets.”
The Santorums also remain staunch opponents of the Affordable Care Act, which they insist will ultimately lead to the rationing of health care and withholding it from the disabled.
“It isn’t fully implemented yet,” Rick said. “The impact of a more government-dictated budgetary system is a longer-term impact, not an immediate impact.”
Others argue the ACA has and will continue to help families looking for help for their disabled children.
The law did away with insurance companies’ ability to deny coverage to people with pre-existing conditions, prevented them from imposing lifetime caps on what they will reimburse, and mandated them to pay for more services and therapies.
“Certainly many people who have benefited the most from this are families with development disabilities who could never get insurance before, or who had it so limited they missed key benefits. It’s a boon for any family who has a child with serious health problems,” said Sara Rosenbaum, a George Washington University Law School professor of health law and policy.
Katherine Neas, spokeswoman for the disability services and advocacy organization Easter Seals, added: “The free market hasn’t served our community very well.”
Karen was 48 years old when Bella was born. The pregnancy had been a surprise. And the Santorums already had a half-dozen children, aged 6 to 17.
“All of us grew up when she was born,” said Elizabeth, a co-author with her parents. “I always say God knew my parents could never be empty-nesters.”
Prenatal tests had hinted at problems, and Karen’s age was a risk factor. The couple also knew from experience they could not assume that things would turn out fine. In 1996, they lost a son named Gabriel Michael, who lived only two hours after being born prematurely.
When their three-pound, curly haired girl arrived by Caesarean section on May 13, 2008, she appeared normal except for the fact that her pinkie and index fingers rested atop her middle ones. It was a subtle marker of the worst possibility that the Santorums had been told to brace for, and that they soon confirmed.
At 10 days old, Bella was sent home from the neonatal intensive care unit on hospice care.
“Care for the dying for our newborn baby — a painful paradox,” Karen wrote.
They were given pamphlets about coffins and grave sites, useless adult-sized nasogastric tubes, doses of morphine for when she went into cardiac or respiratory arrest. Getting a prescription for oxygen, however, was a battle.
Friends sent sympathy notes instead of congratulations. An icy doctor told them plainly: “You have to let her go. Statistically, there’s no hope here.” Karen noticed that he referred to “the baby,” as if Bella had no name.
They had allies, too — one of whom was Bella’s pediatrician, doctor James Baugh, whom Karen described as “kind, thoughtful and compassionate.”
Baugh was authorized by the Santorums to speak to The Washington Post about Bella. He noted that doctors themselves have to take their lead from the families of seriously ill children.
“Every family is different in how they handle such grim news,” Baugh said, adding that most probably would not push for aggressive medical intervention in Bella’s circumstances, given the low survival chances.
“The Santorums’ reaction was an unusual one, so the medical community was thrown back,” Baugh said. “The [approach of the] original team involved would have been standard medical reaction across the country.”
Rick acknowledged that, at first, he was among those more focused on the probabilities than the possibilities. He believed he had to be strong, to prepare for the inevitable.
In Bella’s early months, her father “was at peace if Bella lived or died. And that broke my heart,” Karen wrote.
She agreed that the moment when Bella almost slipped away in the emergency room, the one Rick recounted in Iowa, was an epiphany for her husband.
“He saw that, although he had gone through the motions of fatherhood, he had hardened his heart out of fear,” Karen wrote. “Ever since that day, Bella has had Rick wrapped around her little finger.”
He has learned CPR, how to feed her with a pump and syringes, how to work the nebulizer that delivers drugs by mist to her lungs. She squeals when she sees her father arrive at home, and he tosses her into the air.
“Bella is this little love sink,” he said. “She loves to be loved, and it is so joyful when you give it to her, and she gives it right back, and that just turns me into mush.”
Conspicuously missing from the book is much discussion of financial tension, or the vagaries of health insurance — though both Santorums vividly recall an argument over Karen’s demand that a critically ill Bella be airlifted from a Virginia hospital to Children’s Hospital of Philadelphia.
Her husband initially overruled her. “It’s a $25,000 helicopter ride which was probably not going to be covered by insurance,” he explained in the interview. Ultimately, Karen secured a transfer.
Of the money they spend on their daughter’s care, Rick said: “This is Bella’s college, and we just sort of look at it, this is Bella’s wedding. All of these things, if you look at all of the expenses that come with raising a child, we just look at it as, this is a good investment, because we get another year with Bella.”
Karen added that a child with Bella’s limitations could also qualify for Medicaid, though they have chosen not to take that option: “In fact, there were years when her doctors were really pushing me to put her on Medicaid, so she could get 24/7 nursing care.”
Rick, anticipating a question about a program that Republicans so often attack, quickly added: “Look, I’m perfectly fine, and have been fine, with disabled children being on Medicaid.”
Karen had initially resisted the idea of his long-shot 2012 candidacy, knowing how it would put the burden of Bella’s care squarely on her shoulders.
“It was the Affordable Care Act that put the fire in me,” she wrote. “Squeezing his hand, I said, ‘Let’s give it everything we’ve got.’ ”
Santorum’s comments at that October 2011 forum in Des Moines got little attention outside the state — but he did begin to edge up in the Iowa polls around that time, and he narrowly won the caucuses the following January.
Bella and her condition did not become widely known until February, when she got pneumonia in both lungs and was once again in critical condition. Just before the Florida primary, trailing Mitt Romney and Newt Gingrich, Rick suspended his campaign.
“We didn’t even want to announce why we were going to the hospital and why we were suspending and then the politicos came in and said you can’t just suspend the campaign. They’ll think you are dropping out, you’re losing in Florida,” Rick said.
Then his former chief of staff Mark Rodgers, Bella’s godfather, asked: “Don’t you want the country to pray for her?”
What occurred was the opposite of what they had feared. The other candidates checked in with good wishes. And when Santorum returned to the campaign trail, he was met at almost every event by parents and their disabled children.
Miller said her Trisomy 18 Foundation Web site had never seen so much traffic.
Santorum never caught up with Romney. He dropped out of the race two days after Easter — following another weekend spent at the hospital with Bella.
Karen said her family held up well during the gruels of the 2012 campaign. And if her husband runs again, as he shows every sign of doing, it will be easier because her children are older and Bella’s condition is more stable.
Why Bella has survived remains a mystery.
Her uncle, doctor Michael Lamb, is an internal medicine specialist who began looking into Trisomy 18 when she was born. He said he never accepted the grim prognosis, in part because his niece did not have a defect typical of the condition, and also because he believed she could be helped by treating her immune system.
“When Bella would get these respiratory infections, most doctors didn’t want to do anything,” he said. “Every child has to be assessed individually.”
Her parents say it has been more than three years since Bella had a crisis.
“We are on cruise control” with an intense medical regimen, Karen said.
Her doctor cautions that Bella’s airways remain abnormal, and that even a simple cold could still be disastrous. “She’s done beautifully, but there is still a chance she may abruptly pass away,” Baugh said.
That is something which Rick said he has learned to accept without closing his heart.
“Even if we don’t know how long we’re going to have Bella, we’re blessed. We’re just blessed every day. We don’t live on the edge. But we realize what we’re dealing with, and there’s all sorts of things that can happen, and she’s not — ”
Karen interrupted: “I don’t think about it.”
Rick continued, with tears in his eyes: “She doesn’t think about it, and she doesn’t like me to mention — ”
To which Karen insisted on having the final word: “We just live with her joy.”