Not every family gets the joys of a child who will live a long, healthy life. Some have to deal with a disease that strikes in childhood, and can't be cured despite the best efforts of everyone involved. Others wish they had that much time with their child. A pregnant mother who finds out her fetus is diagnosed with Trisomy 18 or Tay Sachs faces the worst decision of her life. Should she carry the baby to term, and try for a few scant minutes-or more-of life?Or terminate early, sparing everyone the pain? These links provide information, comfort, and support for parents who have to prepare to say goodbye before their children's time.
A Heartbreaking Choice: http://www.aheartbreakingchoice.com/ A parents' site to share stories of ended pregnancies.
American Academy of Hospice and Palliative Medicine: http://www.aahpm.org/ Founded in 1988, and consisting of hundreds of hospice physicians. Also home to the American Boards of Hospice and Palliative Medicine.
Babyloss: http://www.babyloss.com/ A UK-based charity.
Center to Advance Palliative Care: http://www.capc.org/ Providing health care providers with the tools, training, and technical assistance needed to advance palliative care.
Children and Grief: http://www.aacap.org/cs/root/facts_for_families/children_and_grief/ An informational page form the American Academy of Child and Adolescent Psychiatry.
Children's Grief Education Association: http://www.childgrief.org/ Devoted to helping children who have lost a loved one.
Children's Hospice International: http://www.chionline.org/ A global nonprofit to promote pediatric hospice care around the world.
Children's Hospices UK: http://www.childhospice.org.uk/ Information on hospice care in England.
Compassionate Friends: http://www.compassionatefriends.org/ A worldwide support service for parents, siblings, and grandparents.
Hospicenet: http://www.hospicenet.org/html/contact_us.html A non-profit site offering links and information on adult and child hospice centers.
Hospice Directory: http://www.hospicedirectory.org/ A listing of hundreds of hospitals and care centers specializing in hospice care.
Hospice Foundation of America: http://www.hospicefoundation.org/ Started in 1982 in Florida, and now a national organization devoted to leadership in the field.
International Association for Hospice and Palliative Care: http://www.hospicecare.com/ Includes a global directory of care centers that provide hospice services.
The Initiative for Pediatric Palliative Care: http://www.ippcweb.org/ IPPC is a project of the Education Development Center's Center for Applied Ethics, and strives to better children's hospitals and related institutions in dealing with child death.