The profoundly disabled girl known as Ashley, now 10, has achieved her full height, 4 feet 5 inches.
A year ago a family that opted to open up on their decision to keep their severely disabled child a “little girl” forever garnered criticizing media coverage. A year later they still in agree that for their family it was right for “Ashley.”
Her case could change the way severely disabled children are cared for in the future.
“The ‘Ashley treatment’ has been successful in every expected way,” Ashley’s parents told CNN exclusively in a lengthy e-mail interview. “It has potential to help many others like it helped our precious daughter.”
At the age of ten Ashley has reached her full height of 4 feet 5 inches. Her parents know that she will be able to be carried around by them for the rest of their lives. A year ago her family openly blogged about the time when their child underwent a sterilization that would stunt her growth. While the family knows for them it was the right thing it still was against the law in Washington state.
The child will always be a little girl because of the radical surgery but she was never going to be fully an adult regardless. She has the mental capacity of a six month old. Severely brain damaged with the condition called static encephalopathy she will never walk nor talk. She eats through a tube and wears diapers. What she can do is smile and be cuddled and loved. At her size she will always be able to be held and carried to wherever she needs to go.
Ashley did not grow in height or weight in the last year, she will always be flat-chested, and she will never suffer any menstrual pain, cramps or bleeding,” say her parents, who felt it important to publicly address their decision after repeated interview requests, in the hopes of sharing their experience with other families.
In 2004 the little girl went through a hysterectomy, removal of breast buds and had high doses of estrogen to retard both growth and sexual maturation. There are risks but “Ashley” has yet to suffer from any of those.
While many were outraged at the family they counter back with;
“If parents of children like Ashley believe this treatment will improve their children’s quality of life, then they should be diligent and tenacious in providing it for them,” her parents write. “We have a sacred duty to do what we believe is right for our children.”
The operation though wasn’t legal even if it seems to may as the right move. In May 2007 Children’s Hospital admitted that the child should have had a proper court review before the hysterectomy. Today the operation would require a court order.
Some doctors remain adamant the treatment shouldn’t be available.
“Adults can consent. But for a child, we’re making decisions for them and hoping in our heart of hearts we are making the right decisions,” says Dr. Nancy Murphy, chairman of the American Academy of Pediatrics Committee on Children with Disabilities.
The overriding sentiment in the medical community is that this case was unethical.
“I think mutilating surgery involving removal of breast buds is indefensible under any circumstances,” says Arthur Caplan, the chairman of the Department of Medical Ethics and director of the Center for Bioethics at the University of Pennsylvania. “Growth retardation is not a substitute for adequate home aides and home assistance.”
In the end the child known as Ashley survives unaware of the fuss going on around her. Her parents are sure that as long as they are alive they will be able to care for her at home.
And she is loved.
That with all the ethics in the world that oppose or support Ashley’s parent’s choice makes a difference.