Public forum on growth attenuation in children with profound disabilities

The “Ashley” case will be discussed in an open forum sponsored by Seattle Children’s Treuman Katz Center for Pediatric Bioethics on Friday, Jan. 23.

In 2006, doctors from Seattle Children’s reported in the journal Archives of Pediatric & Adolescent Medicine the case of a six-year old girl with profound disabilities whose parents asked doctors to prescribe estrogen to limit her growth so that she would grow no taller than 4’6″.

The parents wanted to keep caring for their daughter at home but did not feel they could if she grew too large for them to lift. They also feared what would happen to her should she fall into the hands of “strangers”.

In that article, Dr. Daniel Gunther and Dr. Douglas Diekema that the child, known as “Ashley”, was at the age of 6 unable to sit up, walk, feed herself, or speak, and had the mental development of an infant.  

The combined opinion of the specialists involved in her care, they wrote, was that “there would be no significant future improvement in her cognitive or neurologic baseline.”

“After extensive consultation between parents and physicians, a plan was devised to attenuate growth by using high-dose estrogen and to reduce the long-term complications of puberty in general, and treatment adverse effects in particular, by performing  pretreatment hysterectomy,” they wrote. The child’s breast tissue was also removed.

The case set off a storm of controversy with advocates for the disabled condemning the treatment, which, they argued, was given for convenience of caregivers not the well-being of the child.

This Friday, Jan. 23, a twenty-person working group convened by Seattle Children’s to explore the ethical issues of the case will hold an open a public forum to discuss its findings.

The event is free but registration is required.

When:

Friday, January 23 from 1:00 – 4:00 p.m.

Where:

Magnuson-Jackson Moot Court Room (Rm. 138)
William H. Gates Hall, University of Washington 

To register:

Visit: http://bioethics.seattlechildrens.org/

To learn more:

• Read the October 2006 article by Dr. Gunther and Dr. Diekema in the Archives of Pediatric & Adolescent Medicine, which is available for free and, at the bottom, has links to letters and commentaries related to the case.
• Read Carol Ostrom’s coverage of the case and the response in the Seattle Times.

Tags: Ashley, Bioethics, Disab, Disabled, Pediatrics

Category: Child & Youth Health, Disabilities, Ethics, Seattle Children's, University of Washington