Resources and Information
Policy Statement of the American Academy of Pediatrics on the Ethical Considerations of Using Infants with Anencephaly as Organ Sources
National Institute of Neurological Disorders and Strokes
The Center for Children with Special Needs

Purchase "Ten Perfect Fingers" by Brenda Winner

Sites Related to Anencephaly

Other Books of Interest on Anencephaly and Organ Transplants

Order "How to Survive the Loss of a Love"
by Melba Colgrove, Harold H. Bloomfield, and Peter McWilliams

One of the most directly helpful books on the subject of loss ever written.
Order "Unspeakable Losses :
Understanding the Experience of Pregnancy Loss, Miscarriage, and Abortion "

by Kim Kluger-Bell

Kluger-Bell examines the "shadow side" of being pregnant--the unspoken grief
of losing a pregnancy before birth through miscarriage, abortion, or stillbirth.

Order "Surviving Pregnancy Loss :
A Complete Sourcebook for Women and Their Families"

by Rochelle Friedman, Bonnie Gradstein

Order "Empty Arms :
Coping After Miscarriage, Stillbirth and Infant Death"

by Sherokee Isle
Order "Empty Cradle, Broken Heart :
Surviving the Death of Your Baby"

by Deborah Davis, Ph.D
Order "Defying the Gods :
Inside the New Frontiers of Organ Transplants"

by Scott McCartney
Order "Organ Transplants : A Patient's Guide"
by Massachusetts General Hospital Organ
Transplant Team, H. F. Pizer
Order "Organ Transplantation : Meanings and Realities"
by Stuart J. Youngner, Renee C. Fox, Laurence J. O'Connell
Order "The Nicholas Effect: A Boy's Gift to the World"
by Reg Green

In 1994, when their 7-year-old son, Nicholas, was killed during a botched car-jacking,
Reg and Maggie Green galvanized all of Italy--and the world--by donating Nicholas's organs
to seven desperately sick Italians, becoming a model of a grief-stricken family
seeking to create good from horror, to reject vengeance in the face of great loss,
to work for justice, and to proclaim--with each of their grace-filled actions--
the superiority of love over hate.

Order "The Ethics of Organ Transplants : The Current Debate "
edited by Arthur L. Caplan and Daniel H. Coelho

With more than 30 of the most important, influential, and up-to-date articles
from leaders in ethics, medicine, philosophy, law, and politics, "The Ethics of
Organ Transplants" examines the numerous and tangled issues that surround organ
procurement and distribution.

Order "Brain Dead, Brain Absent, Brain Donors : Human Subjects or Human Objects?"
by Peter McCullagh

A review of the history of the concept of brain death, and assesses the pragmatic
and moral issues related to organ "harvesting" from ancephalic newborns and
transplants that use fetal brain tissue. Mr. McCullagh asserts that the concept of
"death" is ill-defined by the medical comuunity, and that the public is being kept out
of a crucial debate facing society as a whole.

March of Dimes
The Anencephaly Support Foundation (Non-profit)
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