Caregivers
Support for continuing a pregnancy: Perinatal ospice
By Amy Kuebelbeck
As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, a few hospitals around the country are starting perinatal hospice programs for families who wish to continue their pregnancies with babies who likely will die before, during, or after birth.
Under the conventional hospice model, services do not begin until the baby is born or is discharged from the hospital, which is of little help when a baby has a life expectancy of hours or even minutes. Perinatal hospice, in contrast, is intended to support families from the time of diagnosis, when their grief journey begins. In the words of one perinatal hospice program, Deeya, based at Children's Hospitals and Clinics in Minneapolis: "We walk with families through pregnancy, birth, life, and bereavement - supporting the dignity and value of each life." It's a tender, life-affirming response to one of the most heartbreaking challenges of prenatal testing.
In a 2001 article in the American Journal of Obstetrics and Gynecology, Drs. Byron C. Calhoun and Nathan J. Hoeldtke proposed a perinatal hospice model that incorporates perinatal grief management and hospice care. They recommend using a multidisciplinary team approach - including anesthesia service, labor and delivery nurses, social workers and chaplains - to care for the family before, during, and after birth.
Perinatal hospice now is offered through San Diego Hospice and Palliative Care; Cincinnati Children's Hospital Medical Center; Kansas City Hospice; Texas Tech University Health Sciences Center, El Paso; Angel Babies of Hinds Hospice, Fresno, Calif.; and others.
Even in areas without a formal program, caregivers can offer care in the spirit of hospice. During the remainder of the pregnancy, for example, caregivers can provide frequent ultrasound pictures for the parents to keep, help draw up specialized birth plans, talk with parents about ideas for creating memories, and help plan for baptism or a blessing if parents wish. Caregivers can discuss difficult but practical matters of decisions about medical intervention after birth, organ donation, burial or other disposition of the body, and how to cope when the mother's milk supply comes in. Once the baby arrives, caregivers can help families keep the baby comfortable (if the baby is still alive), take photographs, collect handprints and footprints and locks of hair, bathe the baby, perhaps rock the baby and sing or read to him or her, and invite family members and close friends to see the baby and enter into the bittersweet circle.
Elisabeth Kübler-Ross once said, "Parents are often not given permission by family or friends to mourn the death of their baby, and they are very often left alone in an apparently unsympathetic world, not knowing how to feel and not knowing how to cope." Thanks to Share and others, hospital practices and societal attitudes regarding pregnancy loss, stillbirth and neonatal death are gradually changing. Perinatal hospice builds upon these efforts.
Caregivers who may view continuing a pregnancy following a lethal prenatal diagnosis as an exercise in futility or denial may wish to reconsider. Many families see it as an effort to honor their child and to embrace whatever time they may be able to have together, even if it is only before birth.
"Parental responses have been overwhelmingly positive," Drs. Calhoun and Hoeldtke report. "These parents are allowed the bitter-sweetness of their child's birth and too-soon departure. Grief lessens as time passes and parents rest secure in the knowledge that they shared in their baby's life and treated the child with the same dignity as a terminally ill adult."
(Amy Kuebelbeck is a former journalist and author of Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life. Her newborn son, Gabriel, died in 1999 of hypoplastic left heart syndrome.)
