“The Ashley Treatment” has been done to a dozen of children, Ashley’s father says, but who sent the email to him?

In his third anniversary update of January 13, Ashley’s father writes “About dozen parents all over the world who are successful at providing the treatment to their Pillow Angels (boys and girls) are in contact with us.” He also mentions an email from “an attending doctor of a panel on Growth Attenuation at the pediatric conference held in Hawaii in May 2008” that says “when we asked for a show of hands, about half of the room said they had been approached by a family seeking growth attenuation, and about a dozen raised their hands when asked if they had offered it to a family.”

Claire wrote a great post here about this shocking revelation, pointing out that the growth attenuation is being justified for children with far lighter disabilities than Ashley’s for caregivers’ convenience. I appreciate what she has been writing on this issue. I agree with her 100% and share her sorrow at this new information.

Here, I would like to raise a question. Who is “ an attending doctor” who sent the email and reported to Ashley’s father about how the conference had gone?

The American Academy of Pediatrics had an annual meeting in Hawaii May 3-6, 2008. I found the program of May 4 here. The program 4195 titled “The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental Disability” seems to be the panel mentioned by Ashley’s father. (Please note that “the Pillow Angel” is replaced by ” the Pillow Baby,” and “puberty attenuation” is added to growth attenuation.) The details of the panel from the program are as below.

May 4, 2008

9:00am–11:00am

4195 The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental

Disability

PAS/LWPES Topic Symposium ~ HCC, Room 316AB

Target Audience: General pediatricians, pediatric endocrinologists, developmental pediatricians and ethicists.

Objectives:

– Understand the ethical, social, and developmental implications of growth and pubertal attenuation therapy in the severely

disabled child

– Integrate potential medical and surgical approaches to growth and pubertal attenuation therapy in the severely disabled child

Chairs: David Allen, University of Wisconsin Children’s Hospital, Madison, WI; and Douglas Diekema, Children’s Hospital and Medical Center, Seattle, WA

Growth and puberty attenuation in children with profound developmental disability has recently received national and international media attention since the publication of the Seattle case known as the “Pillow Baby.” Many pediatricians and endocrinologists are now being approached by families of similarly affected children who wish for similar medical/surgical treatments raising various medical, social, and ethical questions.

9:00 Overview

David B. Allen, University of Wisconsin, Madison, WI

9:05 Endocrinological Aspects of Growth Attenuation

Michael S. Kappy, The Children’s Hospital, Denver, CO

9:30 Social Concerns About Growth Attenuation

Robert A. Jacobs, Childrens Hospital Los Angeles, Los Angeles, CA

9:55 A Developmental Perspective

Douglas Vanderbilt, Childrens Hospital Los Angeles, Los Angeles, CA

10:20 Ethical Aspects of Growth Attenuation

Norman Fost, University of Wisconsin, Madison, WI

10:45 Discussion

Program developed by the Lawson Wilkins Pediatric Endocrine Society and the Pediatric Academic Societies

So the panel was chaired by Dr. Allen, pediatrician of the University of Wisconsin who specializes hormone treatment, same university and same interest area as Dr. Norman Fost. It was chaired also by Dr. Diekema. The last speaker of the panel was Dr. Fost. Interestingly, these three were all members of the growth attenuation working group comprised by the Seattle children’s hospital which held its first meeting in April 2008, just a month before this panel. Then, adding the second speaker of the panel to these three, we have all the authors of the article “Growth-Attenuation Therapy: Principles for Practice” in the June issue of the Pediatrics, about which I wrote here and here.

The email sender wrote “we asked for a show of hands” and must be one of the speakers, not anyone in the audience. So who is the doctor who sent the email and reported to Ashley’s father about how the conference had gone. The email also said, “Everybody seemed agreed that it should be studied or that a registry should be created if this moves forward. It should be interesting to see what happens in the endocrine community after that discussion.” It is the father’s plan to make it a study by making a registry of children who go through this treatment. The sender sounds like someone who knows his plan and is willing to work to help him realize it. (If you go to the father’s update and read the full quotation you will note the humble tone of voice of the message, too.) And it is someone who attended the panel. So who is the doctor who sent the email to Ashley’s father?

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