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Former Sen Rick Santorum And His Wife Karen Discuss Raising A Disabled Child In Their New Book

“How can you be at peace? Your daughter has been given a death sentence.”

How do you love a baby who’s going to die? In their new book, former Sen. Rick Santorum and his wife Karen explain their unconditional love for a person who wasn’t supposed to be.

“Bella’s Gift” is a gripping account of the peaks and valleys of loving a severely disabled child. Their eighth child, Bella, was born with Trisomy 18, an extremely rare condition resulting from an extra chromosome 18. Babies born with Trisomy 18 suffer from serious health problems including heart, lung, kidney and stomach defects, chest deformity, feeding and breathing difficulties, a small head and jaw and severe developmental delays. Only 10 percent of babies with Trisomy 18 survive birth. Ninety percent of those who do die before their first birthday.

Bella’s diagnosis was not only painful in its own right, but a bleak reminder of the death of their fourth child, Gabriel. Gabriel was born 20 weeks premature and lived for two hours before passing away.

“When we saw the position of her pinkie and her index finger it was such a shock to us,” Rick told The Daily Caller. The pinkie and index fingers touching on top of the middle fingers is a marker of Trisomy 18. “We didn’t see any classic signs of Trisomy 18 except that hand, and that’s why we focused so much on it. It was the singular marker.”

Karen and Rick struggled with the indifference of the doctors, nurses and care workers that were supposed to help Bella survive. One doctor, who wouldn’t refer to Bella by name, couldn’t understand why “the baby” needed oxygen when “the baby” was going to die. Another couldn’t be bothered to physically examine Bella because, if her chart said she was going to die, why should he? A hospice worker thoughtfully brought brochures for coffins to the Santorum home, along with a dose of morphine that could have accidentally killed her.

“Bella’s Gift” excerpts:

He did not refer to Bella by name and kept telling me not to look at the monitor. My gaze turned stony when he pursed his lips and said, “Well, I think it’s best if you don’t grow attached to the baby. It’s for the best.”

The hospice nurse who visited Bella once a week was kind and understanding, yet there was a somber darkness surrounding her coming, simply for the reason that hospice doesn’t invest in life; it prepares for death. Though she was kind, I dreaded her visits. She brought pamphlets about coffins, funerals, and grave sites. “It’s always best to be prepared,” she’d say as she showed me the different types of marble for a tombstone.

Dr. Baugh took the bottle of morphine and turned pale. He could barely get the words out of his mouth as he shook his head, “Well, that is a high dose.” He explained that it would have been a lethal dose.

Karen, a former neonatal intensive care nurse, railed against the assumed inevitable. “Medical schools teach that certain diagnoses are lethal, and that kids are incompatible with life. Too often these kids are pushed aside and not given any care,” Karen explained to TheDC. “All we’re saying is give the kid a chance. They might not be meant to be here for long, but you never lose the love. We aren’t meant to abandon these kids, but to care for them.”

Miraculously, Bella lived. After 10 days in the neonatal intensive care unit, she went home to her six brothers and sisters.

The Santorums celebrated Bella’s one-week birthday and one-month birthday. They had a birthday party for every week she lived.

Six months later, her heart stopped.