Controversial Hormone Therapy Keeps 'Permanently Unabled' Individuals in Child-Like State

Five years ago, the world was told about Ashley, a 9-year-old from Seattle who was given a treatment that would prematurely stop her growth, keeping her child size. Ashley was born with severe disabilities that would prevent her from walking and developing cognitively past the age of an infant. Her parents decided to allow doctors to give her hormones and perform other surgical procedures -- eventually dubbed the "Ashley Treatment" -- to improve her quality of life. When this treatment was published in a medical journal in 2007, it stirred ethical controversy.

Now, the Guardian reports that support and use of the hormone therapy is spreading. The Guardian states that it knows of at least 12 families who are in the process of carrying out this treatment with their disabled children and that more than 100 children already been treated in this manner.

Parents of these children with severe mental disabilities -- children who are also deemed "permanently unabled" -- believe limiting physical growth will improve their quality of life by avoiding pain they may have experienced otherwise. In a slide about Ashley's treatment, "permanently unabled" is described as being at an "infant level mentally and physically, and will not improve."

The Guardian followed up with Ashley's father about the now 14-year-old's condition, ethical issues, others seeking the treatment and the criticism surrounding it.

During the email interview, AD -- "Ashley's Dad" -- explains that the treatment given to Ashley sped her through puberty so she would stop growing at an earlier age and remain a smaller size. In the last five years, she has grown an inch, and AD writes that she is in stable health. Here's how the Guardian explains the procedure:

For three years from the age of six, Ashley was administered high doses of the hormone estrogen to bring to a close her growth, effectively freeze-framing her body at the size of a child's. She was also given a hysterectomy so that she would avoid menstruation, and had her nascent breast buds removed to escape the discomfort of fully grown breasts.

AD explained that since Ashley cannot walk, scoot or crawl, limiting her size has given her the "best quality of life for someone in her condition." Because she is smaller, her caregivers can easily move her to prevent bedsores:

 We carry her or wheel her to keep her with us in the house, go on walks, get fresh air, and so on.

Ashley's life may be very limited, but like any baby, novelty attracts her attention. We do all we can to provide her with experiences that seem to make her happy, give her a good life, and cheer her into expressing delight through vocalization and kicking.

AD states that as for Ashley's mental capabilities, she remains very much in an infant-like state, but she can hold her head up, stick her thumb in her mouth and push her hair behind her ear. AD said these were "big milestones for her and very exciting developments for us."

AD wrote to the Guardian that many hospitals and doctors will not provide the treatment because of its controversial nature. He notes that cases where treatment such as this would be considered acceptable are rare -- "much less than 1 percent" of children with disabilities should qualify. He said Ashley's treatment cost less than $40,000 and was covered by insurance.

The Guardian reports Curt Decker, director of the National Disability Rights Network, as saying he and his organization will be releasing a report in April petitioning Congress, states and other institutions to ban treatments such as this:

"This is a violation of the civil rights of individuals, and it should be prohibited," Decker said. "Parents have rationalised that this is an OK thing to do, but it treats people as though they have no worth and that's a slippery slope that could end with the idea that people with disabilities don't have to be kept alive or integrated in society."

Silvia Yee, a lawyer with the Disability Rights Education & Defense Fund, agreed with this sentiment, saying it is "just one more choice on the menu of possibilities." She asked, "Who has the right to decide to change an individual into a different entity?"

According to the Guardian, in 2007 the treatment performed on Ashley by the Washington children's hospital was found unconstitutional and in violation of state law because it was done without a court order. The hospital agreed to not perform such a procedure without court permission in the future.

Still, AD said that of the contact he has received from outside parties on this issue, 95 percent has been positive. He said they have received more than 1,100 emails of support from parents and caregivers. Some who disagreed with the procedure before, he said, changed their mind when they visited his blog Pillow Angel -- his nickname for Ashley -- and saw pictures of her.

The Guardian has more from parents in support of this treatment. One is the mother of "Tom", a now 12-year-old boy adopted from Vietnam who has been receiving attenuated therapy treatment since age 7 due to his severe cerebral palsy and epilepsy:

She rejects the argument that the therapy was a form of disrespect for her child: "It's the opposite. It will help Tom a lot and I will be grateful for the rest of my life for what [Ashley's family] did."

Tom's mother said that she was unsure whether the hormone therapy he underwent to keep him small was granted any official approval. "Our doctor told me that there is still no official protocol; cases are assessed one by one."

The mother of a Midwest girl, "Erica", who was treated at age 10 also spoke with the Guardian:

Erica's mother said: "People don't understand we are talking about a small percentage – just one percent of the disabled population with disabilities like Erica's – who would be candidates for this treatment … People think you are playing God or messing with nature. But our loving God wouldn't want Erica to be in pain. She has a right to a happy life."

Complete stories from these two families will be published in the Guardian tomorrow. Read more about AD's perspective on why they decided to give Ashley this treatment and her condition here.