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Rick Santorum, one of the presidential hopefuls, left the campaign trail this past weekend so he could be with his young daughter, Bella, in the hospital. His daughter suffers from Trisomy 18, which is a genetic disorder. The disorder kills 90 percent of children before or during birth and those children who live past birth have serious life-threatening symptoms.
The disorder is also known as Edwards syndrome, which causes children to have an extra copy of the chromosome 18. The syndrome causes symptoms such as low birth weight, clenched hands, a small head and jaw, mental deficiency and an oddly shaped chest.
“Most children with Trisomy 18 die in the first three months of life, and only 10 to 20 percent survive past the first year,” said Dr. Robert Marion, the Chief of Genetics and Developmental Medicine at Children’s Hospital at Montefiore and Albert Einstein College of Medicine.
While pregnant, tests can be performed for parents-to-be to determine if their baby has the syndrome. According to the National Institute of Health, half of infants born with Trisomy 18 do not live past the first week of life. Those that make it to their teen years suffer from serious medical and developmental problems.
“Those who survive are almost always girls,” said Marion. “The reason for this is that the condition is more lethal in boys, who die intrauterinely.”
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The chair of genetic medicine at Weill Medical College of Cornell University in New York City, Dr. Ronald Crystal, said that the syndrome is â€invariably fatal.’ He also said that survival depends on the severity of the symptoms and the quality of care that the child receives. He described Bella Santorum, who is 3, as “already an exception.”
Bella was hospitalized this past weekend for pneumonia and was able to make a “miraculous turnaround,” according to Santorum. Santorum, a former senator from Pennsylvania, decided to resume his campaign for the Republican presidential nomination on Monday. The Santorum family continues to worry about the condition of Bella even though Santorum returned to the campaign trail.
If born with the syndrome, females are five times more likely than males to be live-born. A very small amount of people, most of them women, who suffer from Trisomy 18, have reached their 20s and 30s. A large amount of children with the disorder suffer from congenital heart defects, much like Bella does, which makes it difficult for her heart to pump blood throughout the body. These congenital heart defects can cause fluid in the body to back up and leave children more susceptible to infections, such as pneumonia.
Santorum told Minnesota voters, in a tele-town hall, “I know how she got through it,” he said. “It was with the hands of these doctors and the prayers that guided those hands.”
Back in December, Santorum defended his run for the Republican presidential nomination by saying, “I worry about what I’m trying to do to be the best father and the best husband I can be. And obviously a big part of that is making sure that we have a country that respects her life, and a country that is free and safe and prosperous for all of my children.”
