A new study is bringing encouraging news to families whose unborn babies have been diagnosed with rare genetic disorders.
The Associated Press reports a new Canadian study about children with trisomy 13 and trisomy 18 found that the chromosomal disorders may not be as fatal as doctors often say they are. The news of a genetic disorder in an unborn child often is accompanied by suggestions of abortion.
According to the Trisomy 18 Foundation, the condition is extremely rare and occurs in only 1 out of every 2,500 pregnancies in the United States and about 1 in 6,000 live births. The National Institute of Health reports most children die before birth or within the first few months, and only 5 percent to 10 percent live past their 1st birthday.
But the new Canadian study, published this month in the Journal of the American Medical Association, found a higher survival rate (about 20 percent) among children with trisomy conditions, according to the AP. The study reviewed two decades of data from Ontario, Canada, and followed the lives of 428 babies who were born with trisomy 13 or trisomy 18. The study reported 65 of the children lived for at least a year and 29 lived at least 10 years.
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“There’s little previous research on these children surviving that long, and the new results suggest the birth defects are not always as lethal as doctors have advised parents,” the AP reports.
Bella Santorum, the daughter of former Pennsylvania U.S. Senator Rick Santorum, is one example. Bella (pictured) has trisomy 18. Her parents chose life for her and refused to give up on her, despite doctors’ predictions that she would die soon after she was born.
Because of the love and continued care that she receives, Bella celebrated her 8th birthday in May.
Son Peter with birthday girl sister, Bella, before he leaves for the prom. Happy 8th birthday Bella. pic.twitter.com/A2zycExmYc
— Rick Santorum (@RickSantorum) May 13, 2016
Thanks to the new study and more efforts online and in the media to recognize the value of people with disabilities, more children like Bella may be saved from abortion.
The report explains more about the future for children with these disorders:
Online images of smiling kids with the conditions has led some parents to doubt the dire warnings and seek aggressive and costly surgeries to correct organ abnormalities. Ethicists say the power of social media is changing the landscape for how the medical community views these children, although some still say it is acceptable to let newborns with the conditions die.
… In the study, about 70 percent of the 76 infants who had surgery lived for one year after the procedures. But whether surgery prolongs survival is unclear, said Dr. Katherine Nelson, the Canadian study’s lead author and a palliative care specialist at Toronto’s Hospital for Sick Children. Most infants in her study who had surgery were at least 3 months old when they had the operations, suggesting they were healthier to begin with.
The study was published Tuesday in the Journal of the American Medical Association.
A separate study from nine states found 5-year survival rates of 10 percent to 12 percent for trisomy 13 and 18 children. The highest rates were in those who had aggressive treatment, according to the research, published in April in the American Journal of Medical Genetics.
Despite the survival of some, an editorial accompanying the Canadian study says it is “ethically justifiable” to withhold aggressive medical treatment and let some infants die while offering aggressive treatment to others. Parents’ values should drive the decisions, said Dr. John Lantos, a medical ethicist at Children’s Mercy Hospital in Kansas City who wrote the editorial.
Lantos notes that 30 years ago, new doctors were taught that the two conditions were fatal, but “in the social media age, however, everything changed,” he wrote.
The Santorums admit that life is not always easy because their daughter Bella needs constant care. But they also could not imagine life without her.
“Now, Bella is a ray of sunshine at the center of our family’s universe, every day inspiring our family with her joyful spirit,” Rick Santorum said, previously.
Her story and the dozens of others like her’s also are shining a ray of hope into today’s society. Through increased awareness, these stories are helping people to recognize that every child deserves a chance at life.