At first, the story of “Ashley” sounded purely monstrous: Parents obtained a mastectomy, hysterectomy and anti-growth hormone treatment for their 9-year-old girl, who is so severely mentally and physically disabled that she cannot move or speak or even maintain eye contact.

Ashley’s parents, who have kept secret their names and on a blog they maintain, contend that the radical medical procedures were all for Ashley’s benefit. There is a family risk of breast cancer, they say, and they believe the hysterectomy will spare Ashley decades of pointless menstrual and menopausal discomfort.

They say that keeping her small will make it easier to care at home for the daughter they call their “pillow angel.” And although they write that she is a “blessing and not a burden,” they add “Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers.” Bottom line: We deal with it; you don’t.

Obviously some doctors in Seattle agreed, as they performed the procedures on Ashley. Even Dr. Joel Frader, a medical ethicist at Chicago’s Children’s Memorial Hospital, was loath Thursday to condemn Ashley’s parents:

“This particular treatment, even if it’s OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities. As a society, we do a pretty rotten job of helping caregivers provide what’s necessary for these patients.” So, that’s it, then: Our system of caring for the severely disabled is so bad that a medical ethicist thinks it’s “probably” OK to deny Ashley adulthood.

The largest unanswered question among many now is: What other medical alteration of the disabled should be permissible to simplify their long-term care easier? If parents can green-light such surgeries, should other, non-relative caregivers be given the same options?

Ashley’s parents are being vilified by those who believe that they acted to have their daughter’s body made perpetually childlike to make their lives easier, not hers.

We can’t escape the disquieting questions that underlie this issue: Who could or would be willing to provide the intensive care that Ashley will require during her lifetime?

And if surgical alteration to ensure better long-term care is OK for Ashley, is it OK for other such disabled children? These new, hard questions have no easy answers. The toughest: What is life, anyway?

Theresa Novak is the editorial page editor at the Corvallis Gazette-Times.