A hysterectomy performed on a severely disabled American child to keep her sexually immature and comfortable was illegal, an investigation found on Tuesday.

Ashley’s parents ensured their daughter received hormones to keep her small, as well as surgery to remove her breast buds and uterus to prevent her from maturing sexually (see Forever young: Operating in whose interest?).

However, the hysterectomy was carried out without the necessary court order, according to the Washington Protection and Advocacy System (WPAS), a government-funded agency that advocates for and protects the disabled in Washington state, US.

The WPAS report, issued on 8 May, says that the advice Ashley’s parents received from their lawyer – that a court order allowing her hysterectomy was not needed because sterilisation was not the primary objective of the procedure – was incorrect. Doctors mistakenly relied upon the lawyer’s letter as adequate court review, the report says.


Slippery slope

Seattle Children’s Hospital, where the procedure was performed in 2004, has agreed to a number of measures in response, including adding a disability rights advocate as a permanent member of the ethics committee. The hospital will now require court orders in advance of any future sterilisations or growth attenuation procedures on disabled children.

“This was an internal miscommunication which resulted in a violation of the law, and for that we take full responsibility,” says hospital medical director David Fisher, although he stands by hospital’s decision to treat Ashley’s specific circumstances.

“I wish we had gotten a court order for the hysterectomy,” says paediatrician and bioethicist Douglas Diekema who initiated the hospital ethics committee review of Ashley’s case.

However, he worries that the hospital’s agreement to seek a court order in the future for any growth attenuation treatment of a disabled child creates its own slippery slope, which could lead to court order requirements for more common procedures.

“You’ll have a hard time convincing me that a single judge can make a decision that is somehow more nuanced and less biased than what a whole ethics committee can do.”

Who benefits?

Although the case has proved controversial, Ashley’s parents insist that they are keeping their daughter small and immature for her benefit – to enhance her quality of life while they continue to care for her at home.

The case attracted limited public attention in October 2006, when the doctors involved published details of her treatment and the decision-making process behind it in the journal Archives of Pediatrics & Adolescent Medicine.

However, it was not until Ashley’s parents went public and posted their experiences on a blog in January 2007 that greater attention was drawn to it.

Journal reference: Archives of Pediatrics & Adolescent Medicine (vol 160, p 1013)