Rick Santorum 2016: Daughter Bella Has Trisomy 18 Genetic Condition That Requires Constant Care
In April 2012, Rick Santorum announced he would end his quest for the White House. His 3-year-old daughter, Bella, had fallen sick again and was in the hospital.
Three years later, the former senator from Pennsylvania announced Wednesday that he was ready to jump into the race for a second time and battle a growing crowd of GOP candidates for the Republican nomination. As Santorum makes another go at the White House, Bella's health woes will likely once again play a significant role in his campaign's efforts to find common ground with voters. But while Santorum's political career has afforded him the ability to provide constant care for Bella, other families in similar positions said his views on federally subsidized health care would keep their children from receiving the same quality of medical attention.
Bella Santorum has Trisomy 18, a genetic condition in which a child is born with an extra chromosome. Just fifty percent of fetuses with this condition survive pregnancy. Of those that make it to birth, most die in the first few days, with only 50 percent surviving past one month. Just 10 percent make it to their first birthdays. Children with Trisomy 18 require near constant care.
"The demands are extreme because we’re talking about a child who needs 24-hour nursing care and who has to have medical care around enteral feeding," said Victoria Miller, the executive director of the Trisomy 18 Foundation in Virginia, and the parent of a child who died from Trisomy 18. "These children can’t eat orally, so they require tube feeding and all that goes with that in terms of supplies and nursing."
The Santorum family has spent hundreds of thousands of dollars on Bella's care in recent years, according to public records. But while Rick Santorum has taken a hard line on President Barack Obama's signature health care law, the Affordable Care Act, others say that the federal overhaul has helped less-fortunate families with daughters like Bella to obtain care. The Santorums' adjusted gross income was about $923,000 in 2010.
The law known as Obamacare did away with lifetime caps on coverage, expanded the services that insurance companies must provide, and restricted companies from denying service based on preexisting conditions. Santorum, however, has said the law will create a scenario where valuable health care services are rationed.
"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," said Sara Rosenbaum, a health care policy professor at George Washington University Law School in Washington, D.C. "It’s a boon for any family who has a child with serious health problems."
Santorum would be entering the 2016 race as an underdog in spite of his success in 2012, when he won the Iowa caucus and 10 other state contests to ultimately put him in second behind the eventual Republican nominee, former Massachusettts Gov. Mitt Romney.
In 2012, Santorum faced more than one scare with his daughter's health. In January, after winning the Iowa caucus, Bella came down with pneumonia and was hospitalized later in the month. He took the weekend off, but went back on the trail once she recovered. In April, with Bella in the hospital once again, Santorum suspended his campaign for a final time.
Earlier this year, he released a book that detailed his relationship with his daughter, a struggle that resonated with voters in Iowa and helped him surge in polls in 2012. "Bella gave me the ability to talk about the dignity of every human life without talking about abortion, because there is a bigger issue," Santorum told the Washington Post.
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