For babies diagnosed with fatal conditions in utero, and for the compassionate parents who carry them to term and love them for who they are, there is hope and support. A growing network of perinatal hospices offers care conformed to the specific needs of preborn children and their parents. When a brief Life is expected, perinatal hospice can provide an atmosphere of comfort and support through the first and last hellos and goodbyes of the baby’s Life.
Mothers who have undergone prenatal diagnostic testing early in pregnancy, and know that the child they carry is likely destined for a very brief time on earth, are faced with daily challenges during pregnancy. They often do not have the chance to prepare a nursery, have a baby shower, or pack a homecoming outfit for baby in their hospital bags. They treasure each day of pregnancy, which may be the only time they have to spend with their baby while he or she is alive.
The parents of Robbie, who was diagnosed in utero with a chromosomal abnormality called Trisomy 18, worked with a perinatal hospice in Seattle. Together they made a birth plan specific to Robbie’s condition, and knowing that birth and death would likely happen within a short window of time, Providence Hospice helped Robbie’s parents to enjoy all the time that they would have with their son with as little anxiety as possible. The hospice provided Robbie’s parents with the support they would need after Robbie passed away so that they could focus their attention entirely on him and cherishing their moments together.
The hospice also helps parents to bring their babies home if that is what parents want, looking in on the babies and offering support and encouragement to parents as they strive to make the baby comfortable at home. After the baby dies, the hospice also helps to preserve memories of the baby by “cutting a lock of their baby’s hair or making hand impressions that parents can run their fingers over during all the years to come.”
Maureen Horgan, an expert in perinatal hospice, says that the programs also provide parental education that is specific to their circumstances. For example, they teach parents that warm baths help “stave off rigor mortis,” giving parents more time to hold and caress their baby after he or she passes away. This time of bonding is crucial to grieving parents seeking closure and healing. Sadly, parents were deprived of this important experience for years prior to the perinatal hospice movement, when stillborn or terminally ill babies would be whisked away at birth because medical professionals were under the false notion that a quick separation would be easiest on parents.
Although perinatal hospice represents a great stride in maternal-infant care, the fact remains that a large number of parents choose to end their babies’ lives when they receive an unexpected prenatal diagnosis. (And according to a recent expose conducted by the New England Center for Investigative Reporting, a high number of abnormality diagnoses are actually false positives.) There is a growing movement to change the way that genetic counselors and physicians guide parents who receive these diagnoses, to eliminate a bias in favor of ending the baby’s Life.
Genetic counselors and small studies estimate that only 10-40% of parents who receive a terminal diagnoses while their baby is in utero choose to carry the child to term (in other words, they choose not to end the child’s Life in abortion). Parents facing the earth- shattering news that their baby may not come home in their arms at the end of their nine-month wait may not be fully aware that ultimately, aborting the child does not make their grief or the baby’s illness go away. Abortion only beats a terminal diagnosis to the punch, depriving parents of knowing who their baby was, and babies of the chance to die in the tender embrace of their parents. In light of these startling statistics, the importance of perinatal hospice cannot be underscored enough.