Marion Pellicano Ambrose
Republican presidential hopeful Rick Santorum canceled his Sunday morning campaign events and planned to spend time with his hospitalized daughter. Senator Santorum and his wife Karen were forced to admit their 3-year old daughter Bella to a
“Rick and his wife Karen are admitting their daughter Bella to Children’s
Isabella Santorum has Trisomy 18, a genetic condition caused by the presence of all or part of an extra 18th chromosome. When asked about her, Santorum says his daughter was not expected to survive until her first birthday and often has to catch himself to stop from tears.
"I have a little girl who's 3 1/2 years old," he told Christian conservatives in
"I don't know whether her life is going to be measured – it's always been measured – in days and weeks. Yet here I am. ... because I feel like I wouldn't be a good dad if I wasn't out here fighting for a country that would see the dignity in her and every other child."
When voters ask him about her, he calls the decision to campaign "gut-retching" but says he goes forward for all special needs families.
"You think she's fine, and then one cold and she's this close to dying," he told The Washington Post last year in an interview.
In October, he missed one of Bella's surgeries to participate in a debate and told the audience that he planned to take an all-night flight home from
"I look at the simplicity and love she emits," Santorum said in a web video his campaign released after his scheduling drew questions, "and it's clear to me we're the disabled ones."Santorum largely has kept his daughter off the campaign schedules, preferring her to stay home with her mother. But Bella did join Santorum for a few days around
She didn't join her six siblings for the public speech. She stayed backstage.
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independantly without assisted caregiving.