Recommended Reading

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“With uncertainty of the future, we were scared to allow ourselves to love a baby we wouldn’t get to take home. As the weeks went by, our hearts changed and we celebrated her life and embraced the time we did have. She was in our arms for 20 hours and it changed our lives forever, taught us more than we even realize and showed us that our daughter always was, and always will be a part of our families story.” 

Parent Testimonial

ANENCEPHALY

• A Gift of Time (Kubelbeck and Davis) A Gift of Time is a gentle and practical guide for parents who decide to continue their pregnancy knowing that their baby's life will be brief.  When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, some parents will choose to proceed with the pregnancy and to welcome their child into the world. With compassion and support, A Gift of Time walks them step-by-step through this challenging and emotional experience―from the infant's life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death. 
• Anna, a Daughter’s Life (William Loizeaux) is a journal of memories and remembrances written by the father of a baby girl who died from VATER Syndrome when she was several months old. 
• Bittersweet...hello goodbye. A Resource in Planning Farewell Rituals when a Baby Dies (edited by Lamb) Guidance and specific suggestions for creating a meaningful memorial service.
• Couple Communication After a Baby Dies (Sherokee Ilse and Tim Nelson) provides insight into the differences and similarities of men and women who grieve.  The book includes the stories of two “imperfect couples” (the Ilse’s and the Nelson’s) who have endured 20+ years since their babies have died.  The book also includes a mini-workbook of conversation starters. Ilse has written over 17 books and booklets on loss and has worked with numerous infant loss organizations.  Nelson is the author of A Father’s Story as well as “A Guide for Father’s When a Baby Dies” and co-founded A Place to Remember publishing company. 
• Creating Meaningful Funeral Ceremonies:  A Guide for Families (Wolfelt) Practical ideas for creating authentic, personalized, and meaningful funeral ceremonies.
• Empty Cradle, Broken Heart (Deborah L. Davis) is a national best seller that has been providing comfort and reassurance to parents for many years.
• Goodbye My Child (Wheeler & Pike) Guide for newly bereaved parents. Talks about funeral planning, differences in losses, the five phases of mourning, men and women grief, grandparents, your other children, family and friends and picking up the pieces.
• The Good Grief Club (Monica Novak) is the true story of seven women who make a connection and form friendships through a perinatal loss support group.  It shares their stories as well as how they rebuilt their lives after their losses.
• Losing Malcolm: A Mother's Journey Through Grief (Carol Henderson) tells the story of their son who was diagnosed three days after birth with a heart problem.  Malcolm ends up dying after an emergency surgery. Along with her expression of intense grief, most readers will relate to Henderson's accompanying feelings of inadequacy and guilt. Along that path she experienced mindless numbness, frustration, resentment of other women with their children, fear of her own body, and rage at people who dismissed her loss. Even when she became pregnant again, she felt that the new baby was "floating in a womb of tears." And yet she had the wisdom to embrace all these reactions as natural aspects of the grieving process.
• Loving and Letting Go (Davis) This books is designed for parents who decide to reject aggressive medical intervention for their critically ill newborns. It includes chapters on facing the decision, the dilemmas of withdrawing artificial support and a gentle final chapter, "Letting Go With Love."
• Planning a Precious Goodbye (Ilse & Martinez) Specific suggestions for creating a meaningful memorial service for their baby who has died.
• Silvie's Life: Biography of a Baby Girl (Marianne Rogoff) Imagine a joyous, healthy pregnancy, a well-thought out birth plan, a normal labor, a baby who doesn't cry, who lies limp on her mother, and is raced by helicopter to a hospital with an intensive care nursery. There the nightmare becomes reality, a baby born with severe brain damage, with no identifiable cause. One week after Silvie's birth, her parents are advised to take her home to die. The doctors guessed that she would die in a few days; those days stretched into weeks, accumulated into months. Rogoff's luminous memoir details the conflicting emotions she and her husband felt as they continuously braced themselves for their baby's death. Her descriptions of living in limbo, trying to balance hope with reality, are powerful.
• Waiting with Gabriel (Amy Kuebelbeck) tells the journey of the author and her family as they prepare to deliver their baby boy who was diagnosed before birth with a fatal heart malformation. 
• When a Child Dies:  A Resource for Families (Charles & Ciepielinski) They cover everything from funeral & memorial planning to helping surviving siblings; from announcements to thank you cards; from support for parents to tips on how family, friends, caregivers can actually be helpful.
• When a Meeting is Also a Farewell (Ingela Radestad) is about the author’s first child Ellen who died shortly before birth.  As a midwife and now mother of three, she wrote a book to help parents and those around them cope with the death of a very young child in a sensitive yet realist way.  The book includes personal interviews, letters, and poems as well as guidelines and suggestions for healthcare providers.