Trisomy 18 daughter ‘a gift from God,’ former Sen. Rick Santorum writes

Philadelphia, Pa., May 6, 2010 / 23:06 pm

His daughter with trisomy 18 is a loving child at the center of his family’s life, former U.S. Sen. Rick Santorum has said. Though she has taught character and virtue to everyone he meets, he lamented that so many children with her condition are aborted or face doctors with a “negative perception” towards the severely disabled.

In a Wednesday column for the Philadelphia Inquirer, Santorum told of how he and his wife were aggrieved when doctors told them their newborn child, Isabella Maria, had a condition which was “incompatible with life.”

Their eighth child, Bella was born with trisomy 18, 90 percent of whose victims die before or during birth and 90 percent of survivors die within the first year. Most of those diagnosed in the womb are aborted.

The infant was baptized the same day she was born. Rick Santorum and his wife Karen then spent “every waking hour at her bedside, giving her a lifetime's worth of love and care,” the former senator wrote. “However, not only did she not die; she came home in just 10 days.”

Bella was placed on home hospice care, but the hospice doctor graphically described how Bella would die. He claimed the best Bella’s parents could hope for was that she would die of the common cold.

The Santorums discontinued hospice care so that they and their doctors could focus on Bella’s health, “not her death.”

Santorum praised his wife’s “night and day” care for Bella and her fight with health care providers and insurance companies to secure care for Bella.

“Being the parent of a special child gives one exceptional insight into the negative perception of the disabled among many medical professionals, particularly when they see your child as having an intellectual disability,” he explained in his Philadelphia Inquirer column.

They had difficulty finding doctors who were both experienced in treating trisomy 18 and who saw Bella not as a fatal diagnosis but as “a wanted and loved daughter and sister, as well as a beautiful gift from God.”

At the age of three months, Bella needed minor but “vital” surgery. Some doctors said she wouldn’t survive surgery or said it was “not recommended” because of her genetic conditions.

“In other words, that her life wasn’t worth saving,” the former Senator interpreted.

The Santorums found Dr. Thane Blinman, who has had several trisomy 18 patients who did well.

Former Sen. Santorum said that Bella’s second birthday will come next week. Despite the “constant anxiety” of two close brushes with death and many sleepless nights, he said his family has been “inspired by her fighting spirit.”

The Santorum family has seen her “blossom” into a loving child at the center of their family life. She has also taught “character and virtue” in both her family and in every life she touches.

Rick and Karen Santorum recently received Franciscan University of Steubenville's Poverello Medal for their efforts to promote the pro-life cause.