An Adverse Prenatal Diagnosis often leaves expecting parents concerned and flanked with questions and mounting pressure by hospitals or physicians. In spite of that, there are resources and networks of support that assist during this challenging time in a pregnancy.
Perinatal Hospice Care
Are you faced with a severe or fatal prenatal diagnosis? What if there was a medical team who worked hard for you and your baby to enjoy every precious moment together in a loving environment, turning the suffering into an occassion of sweet memories for your family?
Dr. Elvira Parravicini is the Director of Neonatal Comfort Care Program at at Columbia University Medical Center. Dr. Parravicini is the founder and medical director of a unique and innovative program for infants affected by life-limiting or terminal conditions. The Neonatal Comfort Care Program untilizes a multidisciplinary team to addresses the complex medical and non-medical needs of infants and their families. The team includes a nurse coordinator, social worker, speech pathologist, child life specialist, psychologist, and chaplaincy. They work together to establish a state of comfort for babies in a compassionate, loving environment.
Here is a talk by Dr. Elvira Parravicini from the GIVEN forum.
20 Minutes in Eternity by Daniel Dumas. Written from a Catholic perspective, this story is about the journey of a husband and wife whose unborn son is diagnosed with a fatal diagnosis, and their decision to carry him to term
Letters to Gabriel: The True Story of Gabriel Michael Santorum by Karen Garver Santorum. Karen Santorum, wife of former Senator Rick Santorum tells the story of their son’s brief 2-hour life, wile expressing the gift of life, family values, the bond between parent and child, the grieving process and the paradox of suffering.
Be Not Afraid is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories articles, and links within the site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. These families faced the same decision and chose not to terminate. By sharing their experiences, they hope to offer encouragement to those who may be afraid to continue on.
Prenatal Partners for Life provides support information and encouragement for carrying a baby to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth.
Isaiah's promise provides support for families carrying to term after a severe or fatal prenatal diagnosis .