Perinatal Hospice & Palliative Care 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 350 programs.
Carrying To Term is dedicated to providing non-directive information on pregnancy continuation for prenatal diagnoses of life-limiting conditions.
String of Pearls was created to provide a nurturing and safe place for families as they navigate the path following a prenatal diagnosis that may result in the death of their baby prior to, or shortly after birth.
Support Organization for Trisomy (SOFT) is a support organization for Trisomy 18, 13, and related disorders.
Anencephaly.info is a site which provides supportive information to families about Anencephaly.
Postpartum Support International provides current information, resources, education, and to advocate for further research and legislation to support perinatal mental health.
Return to Zero: HOPE is a community of bereaved parents, families, and providers offering inclusive resources and holistic support for anyone whose life has been touched by loss, including infertility, secondary infertility, miscarriage, ending a wanted pregnancy, stillbirth, infant or toddler death, loss through surrogacy or failed adoption.
Now I Lay Me Down to Sleep provides remembrance photography to parents experiencing the loss of a baby with a free gift of professional portraiture.
Youth and Funerals is a free e-book created by the Funeral Service Foundation which provides information about the important role funerals and memorialization play in the lives of youth. This includes information about how to prepare and include children in funeral rituals.
What Parents Need to Know About Explaining Death and Grief to a Child: An article published by psychosocial staff from the Children’s Hospital of Philadelphia.
Preparing a Child for the Death of a Parent or Loved One: An article created by the American Cancer Society.
Resources on Death for Young Children, Families, and Educators: An article created by the National Association for the Education of Young Children.
Mesothelioma Hope provides personalized medical, financial, and supportive care for patients, families, and caregivers at every step of their mesothelioma journey.
The Apricity Hope Project is a nonprofit organization for parents and caregivers of medically complex, special needs children who are impacted by life-threatening conditions who live or are treated in the Hampton Roads area of Virginia.
Courageous Parents Network is a non-profit organization that orients and empowers parents and others caring for children with serious medical conditions, by providing resources and tools that reflect the experience and perspective of other families and clinicians.
Pediatric Palliative Care Coalition (PPCC) is a Pennsylvania-based statewide coalition providing information and resources for families of children with life-limiting conditions, and for the medical providers who support them.
Not If But When is a website designed to encourage and support sharing good books and stories about death and loss with children and teens throughout their lives.
Eluna Resource Center is a collection of resources with the purpose of supporting children and families impacted by grief or addiction.
Robert’s Press is Canada's only Grief Resource Centre and offers hundreds of grief resources, H.U.G.S. (Helping Understand Grief Training), Empowerment Workshops, articles and more.
Centering is a 501 (c)(3) non-profit organization dedicated to providing education and resources for the bereaved.
The Autism & Grief Project is a dedicated online platform designed to validate and support the grief of autistic adults. There are also resources on this page that can help families support an autistic child (under the Resources section).
Daniel’s Fish Dies is an episode of Daniel Tiger’s Neighborhood where Daniel experiences the death of his beloved goldfish, Blue Fish. This episode does a great job of explaining death, and introducing healthy ways to cope with grief (this link is a clip of the original episode).
Farewell Mr. Hooper is an episode of Sesame Street that explains the death of one of the cast members, Mr. Hooper.
The information on this page is neither exhaustive nor comprehensive, but may serve as a good starting point for families who wish to seek more support or information as they cope with a life-threatening or terminal diagnosis. Abigail has no business relationship with the authors, publishers, or organizations.
More Helpful Children’s Books
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Finding the Words by Alan D. Wolfelt
This is a handbook that includes suggested phrases and discussion points to help explain serious illness, death, and dying to preschoolers, school-aged children, and teenagers. It is divided by relationship-type (e.g. parent, sibling, friend) and developmental age.
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The Invisible String by Patrice Karst
This is a story about a mother and her kids discussing how they are connected by an "invisible string" of love even when they are apart (e.g. at school, in bed). It mentions an Uncle in Heaven, and that the string also reaches him. This is appropriate for pre-school and older.
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The Gift of the Ladybug by Carole M. Amber
This is a story about two horses who become the parents of a ladybug. The book describes how the parents learn of the different needs and abilities of ladybugs, and how ladybug lives are shorter than horses. This may be used as a metaphor for children with complicated medical needs or disabilities. The parents cherish the time they have with their ladybug son, and treasure his memory after he dies. This book is appropriate for pre-school and older.
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Water Bugs and Dragonflies by Doris Stickney
This is a coloring book for kids with a corresponding story used to explain death with a metaphor of water bugs becoming dragonflies. Water bugs live in a pond and see their friends climb a lily stalk one by one, never to be seen again. They aren't sure why this happens, and vow to tell each other what happens if they also climb the stalk. One bug does, and grows wings once he is outside the pond and is unable to return as planned, as dragonflies cannot swim in the water. He is sad to not be with his friends, but he enjoys his new life outside the pond and looks forward to seeing his friends again once they also become dragonflies. This is appropriate for pre-school and older.
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Something Very Sad Happened by Bonnie Zucker
This is a toddler's guide to understanding death. It is both simple and clear in its messaging, is non-religious, and can be easily adapted to make sense of different death losses that happen within the family. Because you may change the words to accommodate your specific family's experience, it may be better to use with children who are not yet able to read, but the message in the book can be helpful for any young child.
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Something Happened by Cathy Blanford
This book is about a family who is expecting a new baby and experiences the death of the unborn baby. The book is written from the perspective of a young child and has helpful insights for parents on each page explaining different grief concepts and how they apply to children and their understanding of death. It has a non-religious perspective and is appropriate for toddlers through adolescence.
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Lifetimes by Bryan Mellonie and Robert Ingpen
This book can be used to explain death to children. It uses imagery from nature like animals and plants to explain that all lifetimes have a beginning and an end, and also explains that dying is a part of living. It is appropriate for all ages.
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My Many Colored Days by Dr. Seuss
This is a book that talks about feelings in the context of different colors. It is helpful in expanding feeling vocabulary and allowing a space to talk about big feelings. This book is appropriate for all ages.
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You've Got Dragons by Kathryn Cave
This is a story which explains how everyone has "dragons" which are actually worries, fears, or anxieties. It talks about how to cope with your "dragons," how helpful it can be to talk about them, and suggests different coping strategies that may help. It may be helpful for young elementary school children and older.
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The Memory Box by Joanna Rowland
This book is written from the perspective of a child who has experienced the death of a loved one and grapples with missing her loved one and fearing she will forget them. It uses imagery of a church, but is not inherently religious. It is appropriate for school-aged children through adolescence.
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We Were Gonna Have a Baby but We Had an Angel Instead by Pat Schwiebert
This book is about a little boy whose mom is pregnant, and the baby is stillborn. It is clear in its language about death, grief, and emotions; and has some religious imagery (angels). It is appropriate for toddlers and school-aged children.
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My Yellow Balloon by Tiffany Papageorge
This book is a about a little boy who gets a balloon at a fair which he adores, and one day loses. He grieves the balloon and seeks support from family. He eventually finds joy again. It is a lovely metaphor for grief and loss and hope. It is appropriate for school-aged children and older.