Websites
PERINATAL HOSPICE & PALLIATIVE CARE (PHPC)
The most comprehensive and up-to-date website related to Perinatal Palliative Care (PPC). It includes listings of all existing programs in the U.S. and internationally. PHPC provides resources for parents, including videos, testimonials, books, websites of interest, link for on-line forum, and bereavement resources. Resources for caregivers include medical videos, books, hundreds of scientific articles relevant to PPC, and information for conferences, training courses and online education.
SUPPORT ORGANIZATION FOR TRISOMY (SOFT)
The most comprehensive website related to trisomy 18, 13 and other related disorders. SOFT was launched in 1980 and is currently associated with nearly 2,000 families and 250 professionals. It provides a large number of written and video resources for families at any stage of the diagnosis, and throughout life. SOFT also provides resources for medical professionals including growth charts, literature, and information about potential medical and surgical treatments.
HLHS COMFORT CARE
A collection of family stories / testimonials. HLHS Comfort Care also provides resources about the non-surgical option for babies with hypoplastic left heart syndrome.
A Gift of Time (A. Kuebelbeck, D. Davis)
Waiting With Gabriel: A Story of Cherishing a Baby’s Brief Life (A. Kuebelbeck)
My Many Colored Days (Dr. Seuss)
The Feelings Book (Todd Parr)
The Goodbye Book (Todd Parr)
I Miss You: A First Look at Death (Pat Thomas)
When Dinosaurs Die (Laurie Krasny Brown)
Something Happened (Cathy Blanford)
We Were Gonna Have a Baby But We Had an Angel Instead (Pat Schwiebert)
The Invisible String (Patrice Karst)
Life is Like the Wind (Shona Innes, Irisz Agocs)
Help Me Say Goodbye (Janis Silverman)
Special Delivery (Melanie Tioleco-Cheng, Melissa Tioleco-Cheng) **
** Free copies of this book may also be requested at www.SpecialDeliveryBook.org
