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AADMD and Amelia

in Rick Rader MD, Seth M Keller MD, Info Blast

For Immediate Release


The Children’s Hospital of Philadelphia (CHOP) is one of the largest, oldest and most respected children’s hospitals in the world. They have been voted as the “best children’s hospital in the United States” by U.S. News and World Report and Parents Magazine in recent years.

The AADMD has long admired the work of CHOP in the area of treating children with “special healthcare needs” and their contribution to the longevity of this population has in part prompted the growth of the AADMD to insure the “CHOP level of care” continue throughout the lifespan. Of particular significance is CHOP’s stated reference to “Availability of Patient Care”….”We provide services to those patients for whom we can safely and appropriately provide care, regardless of race, color, national origin, ancestry, religion, sex, sexual orientation, marital status or actual or perceived disability.”

It is because of the history, legacy and commitment of The Children’s Hospital of Philadelphia that the American Academy of Developmental Medicine and Dentistry is disappointed and dismayed to learn that they have refused a kidney transplant to a young girl named ”Amelia” who has Wolf-Hirschhorn Syndrome, a rare genetic disorder. The transplant team has rejected her due to “quality-of-her-life- Because-of-her-mental-delays” (quote attributed to CHOP transplant physician by Amelia’s mother).

The AADMD had hoped that the notion of denying appropriate organ donations to individuals with intellectual and developmental disabilities was put to rest in 1995 with the case of Sandra Jensen. Sandra was a young woman with Down syndrome who was denied a heart/lung transplant. Sandra eventually got the transplant and lived for 16 months. Her death was not due to her cognitive limits as the reason cited for refusal by the two California transplant centers. She died because of the side effects of one of the drugs she took to prevent rejection.

In an article published in Pediatric Transplantation (Martens, Reiss et al., Organ transplantation, organ donation and mental retardation, 2006) we find, “Presently there is little scientific data demonstrating poor outcomes or medical complications following organ transplantation in individuals with MR….it was suggested that ADA’s requirement of “reasonable accommodations” implies that patients with MR be given support services and that transplantation decisions be made on an individual basis and not influenced by whether or not a person is part of a specific MR category or group.”

Thus it is the opinion of the Board of the American Academy of Developmental Medicine and Dentistry that transplant centers begin to embrace the idea that more than organs are being transplanted…..what is hopefully being transplanted is the notion of dignity, justice and humanity….the very triumvirate philosophy that we hope will continue at the Children’s Hospital of Philadelphia.

Rick Rader, MD
Vice President for Public Policy and Advocacy , AADMD

Seth M. Keller, MD
President, AADMD

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