Trisomy 18, also known as Edwards syndrome, is a condition that is caused by a error in cell division, known as meiotic disjunction. According to the Trisomy 18 Foundation, the condition is extremely rare and occurs in only 1 out of every 2500 pregnancies in the United States and about 1 in 6000 live births. Former Senator and presidential hopeful, Rick Santorum, is familiar with the condition because his daughter Bella was born with it.
The Santorum’s said the following when Bella beat the odds and survived:
“The news from doctors was bleak, and the odds were stacked against Bella. Of the 10% of babies with Trisomy 18 who survive birth, 90% won’t make it to their first birthday. Ten days after her birth, we brought Bella home, and doctors prepared us for how she was going to die. Frankly, this made us angry; Karen and I were not going to just let Bella go, we were going to fight to give her the opportunity and the chance to do as well as she could. We did just that. We celebrated her life every day, and took nothing for granted, rejoicing in every day we had with her. And since those early, difficult days, an amazing thing has happened: Bella has defied all of the odds. Nearly four years later, Bella is a ray of sunshine at the center of our family’s universe, every day inspiring our family with her joyful spirit.”
Rick admits that until Bella was five months old he was convinced that she was going to die and thought the best thing he could do was to treat her differently and not love her as he had his six older children. He believed that it wouldn’t hurt as much to lose her if he had his guard up. However, since then he’s realized that was wrong. He said, “I remember holding that finger, looking at her and realizing what I had done. I had seen her as less of a person.”
Unbelievably, now Bella is seven and the Santorum’s are releasing a new book called, Bella’s Gift, about their family’s journey with their daughter’s condition. The book discusses the morality of abortion as it relates to children with disabilities, especially for children diagnosed with Trisomy 18. Both Karen and Rick wrote the book and their chapters were written separately.
Theirs has been a shared journey, but one in which they initially found themselves on different paths.
The Santorums each started with a different interpretation of God’s will. Hers was a conviction that providence had put a challenge before them, one that they should fight to overcome. His was an acceptance that it was out of their hands, and that they should come to terms with that.
He was out of step with others in his family as well. There was the time that Rick and his teen daughter, Elizabeth, were putting together a crib for newborn Bella. Rick told Elizabeth to save the box, in case they needed it to send the bed back to the store, because “we just don’t know how long Bella is going to be here.”
He wrote: “I wish I could take those words back, because I’ll never forget the way she looked at me, as though I had not only hurt her but condemned Bella myself. My feisty Lizzie grabbed the box and tore it up as she started to cry.”
“Bella’s Gift” is an unorthodox volume to put out as Santorum gears up for a second presidential bid.