Rick Santorum's daughter Bella was born with Trisomy 18, a chromosomal disorder.
Children with Trisomy 18, also known as Edwards syndrome, have three copies of chromosome 18, instead of the normal two, in their cells. Many pregnancies with affected fetuses miscarry, and half of all affected babies who are carried to term will be stillborn, according to the Trisomy 18 Foundation. Most cases aren’t inherited but occur as a random error in cell division during the formation of eggs and sperm, according to the National Library of Medicine.
“They usually die from inability to breathe,” says Dr. Larry Fenton, director of pediatric palliative care at Sanford Children’s Hospital in Sioux Falls, S.D. “The mechanism of the brain telling the lungs to expand frequently is defective.”
NBC's Domenico Montanaro reports on Rick Santorum's daughter being taken to the hospital and the state of his presidential campaign.
Still, “while the developmental disability in children with Trisomy 18 … is significant, it is important to recognize that children do advance to some degree in their milestones,” Dr. John Carey, a pediatric geneticist at the University of Utah Health Sciences Center, writes on the Trisomy 18 Foundation’s website. “They can interact with their families, smile and acquire some skills, such as rolling over, self-feeding, etc., if they survive infancy.”
The reason for Bella's current hospitalization hasn't been released.
"Rick and his wife Karen have taken their daughter Bella to the hospital. The family requests prayers and privacy as Bella works her way to recovery," Santorum Communications Director Hogan Gidley said in a statement.
In January, she was rushed to a hospital in Virginia when she developed double pneumonia.
The Santorums have medical equipment in their Virginia home and and a nurse on call that can tend to Bella. Because of these accommodations, Bella only needs to be taken to the hospital when her condition is very serious, a person familiar with the situation told NBC News.
This is the second time during the campaign that his 3-year-old with Trisomy 18 has needed to be taken to a hospital. Santorum canceled events in late January after Bella was rushed to a Virginia hospital when she developed pneumonia in both lungs.
The Santorums prefer to take Bella to Children's Hospital of Philadelphia, but the severity of the January incident caused the family to rush to a hospital closer to their Virginia home.
It is unclear at this time which hospital she has been admitted to.
A small number of children with Trisomy 18, usually girls, live into their 20s and 30s, according to the foundation. However, the organization says, they have “significant developmental delays that do not allow them to live independently without assisted caregiving.”
Those who do survive beyond their first year usually can’t talk or walk and need some sort of a feeding tube in order to get nourishment, Fenton says. Although they are able to breathe, they’re likely to die eventually of pneumonia or other infections, he says. Largely it’s because they spend a lot of time in bed. "They don’t do the kinds of things that help clear the lungs, so they are much more vulnerable to infections.”
Recently, Fenton says, he met a 30-year-old woman with Trisomy 18, the oldest person he’d ever met with the disorder. “I would have to say she was profoundly disabled on the one hand and beautiful on the other. She was impeccably dressed. She had makeup on. She clearly knew her mom and dad and could reach out to them.”
Santorum's ailing daughter taken to the hospital
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