Perinatalhospice.org is a clearinghouse of information about perinatal hospice & palliative care, including many resources for parents and caregivers as well as an international list of more than 300 programs. The website was founded in 2006 by and is edited by Amy Kuebelbeck, a journalist with experience at the Associated Press and other news organizations and lead author of A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief (Johns Hopkins University Press, 2011; also published in Polish, Dar czasu, 2017, and Czech, Darovaný čas, 2020). She described her experience of continuing a pregnancy with a life-limiting prenatal diagnosis in her memoir, Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life (Loyola Press, 2003), with translations published in Italy (Aspettando Gabriel, Edizioni San Paolo, 2005) and in South Korea. The book received attention from a variety of media, and Publishers Weekly called it "exquisite." Both books are used by many hospitals and clinics as resources for patients.
Kuebelbeck has been invited to speak at numerous medical conferences across the U.S., Canada, the Czech Republic, England, Italy, and New Zealand about the issues raised in her books. (A list of speaking events is here.) She founded a perinatal hospice e-mail group for caregivers in 2006, which now has more than 300 members, and continues to serve as moderator. She has written a number of articles to help explain perinatal hospice & palliative care to health professionals as well as the public, including this blog post and summary and chapters in Handbook of Perinatal and Neonatal Palliative Care (Springer, 2020), Perinatal Palliative Care: A Clinical Guide (Springer, 2020), and Neonatal Palliative Care for Nurses (Springer, 2020). She regularly shares perinatal hospice news with several thousand followers on Facebook and Twitter, and she also has been quoted by media including the New York Times and MSNBC.com in stories about perinatal hospice and related issues. She lives in Saint Paul, Minnesota.