Upon receiving an unexpected prenatal diagnosis, parents are often left feeling devastated, fearful, and overwhelmed. As prenatal testing continues to advance, more parents receive this heartbreaking news about their much loved and wanted baby. Common conditions include anencephaly, spina bifida, Down syndrome, Trisomy 13, Trisomy 18, Potter’s Syndrome, and severe heart defects, but there are many conditions which can challenge a baby and family during a pregnancy.
Embracing Grace was founded by families who have experienced this heartbreaking news. We offer peer support and a network of resources to women and families who find out during their pregnancy that their baby has a potential life-limiting condition and continue to carry their baby. We sojourn alongside families and help them to make fully informed decisions and meaningful plans to protect, honor, and celebrate the life of their fragile baby. Carrying their baby to term is not about passively waiting for death. It is about actively embracing the potentially brief, always beautiful moment of this little life.
Embracing Grace is the peer support component within a perinatal palliative model of care. Having lived this situation, we bring our personal experience, training and extensive network to support families. We bring options and resources to help the family advocate for and achieve their wishes for their baby’s care and life. Our peer supporters assist from the time of diagnosis with birth planning and support, keepsake collection, grief guidance, and referrals to help with palliative care, funerals, and pastoral care. Many of us were served by a fellow peer supporter during our journeys and can strongly testify to the tremendous and positive impact this support made for our baby and our healing. We understand the critical importance of cherishing and preparing for this baby’s beautiful life and that is why we serve.
The broader umbrella under which we work, perinatal palliative care, is an innovative, practical, and healing model of services that supports families from the moment of diagnosis through the remainder of the baby’s life, with decision-making before and after birth, and through grief, if applicable. This model provides supportive services that can be incorporated into standard maternity and birth care. It is a comprehensive and multidisciplinary team approach that can include obstetricians, perinatologists, labor & delivery nurses, neonatologists, NICU staff, chaplains/pastors, and social workers, as well as genetic counselors, midwives, doulas, traditional hospice professionals, and peer supporters.
It includes basic care to satisfy the baby’s needs, such as bonding with the family, warmth, nutrition, and pain alleviation (if needed). Palliative care includes medical treatments to potentially help improve the baby’s life. It allows the baby to be treated with dignity, to be protected if and until death comes naturally, and for the baby’s life to be filled with love. It gives the parents the gift of the fullest life possible for your child and a natural, peaceful goodbye.
The number of parents choosing to carry their baby to term increase dramatically when offered perinatal palliative care and reassured that they and their baby will receive supportive care. In a U.S. study, when parents were given the option of perinatal hospice, the number choosing to carry was 75% (D’Almeida 2006). And in another U.S. study, the number who chose perinatal hospice was 85% (Calhoun 2003).
Positive parental responses to perinatal palliative care are heart-stirring. Parents report being emotionally and spiritually prepared for their infant’s death, feeling “a sense of gratitude and peace surrounding the brief life of their child.”