The Vatican has published a free book online that can be a resource for parents facing a difficult or fatal diagnosis for their unborn child during pregnancy.
The nearly 300-page ebook is a compilation of speeches given at a Vatican conference held last year dedicated to the medical care and ministries that support families who receive a prenatal diagnosis indicating that their baby will likely die before or just after birth.
“Yes to Life: Caring for the precious gift of life in its frailness,” a conference organized by the Vatican Dicastery for Laity, Family, and Life in May 2019, brought together medical professionals, bioethicists, ministry providers, and families from 70 countries to discuss how best to provide medical, psychological, and emotional support for parents expecting a child with a life-limiting illness.
“Sometimes people ask me, what does perinatal hospice look like? And I answer, ‘It looks like love,’” author and mother Amy Kuebelbeck shared at the conference.
Kuebelbeck was 25 weeks pregnant when she received the diagnosis that her unborn son had an incurable heart defect. She carried her pregnancy to term and had a little more than two hours with her son, Gabriel, before he died after birth.
“It was one of the most profound experiences of my life,” Kuebelbeck said. She wrote a memoir of her experience of grief, loss, and love called Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life.
“I know that some people assume that continuing a pregnancy with a baby who will die is all for nothing. But it isn’t all for nothing. Parents can wait with their baby, protect their baby, and love their baby for as long as that baby is able to live. They can give that baby a peaceful life -- and a peaceful goodbye. That’s not nothing. That is a gift,” Kuebelbeck wrote in Waiting with Gabriel.
Kuebelbeck’s testimony at the conference is included in the ebook in English, as is a transcript of the presentation provided by Dr. Byron Calhoun, a medical professor of obstetrics and gynecology, who first coined the term “perinatal hospice.”
Calhoun’s research has found that allowing parents of newborns with a terminal prenatal diagnosis the chance to be parents can result in less distress for the mother than pregnancy termination.
Other speeches from the conference are also published in Italian and Spanish, such Sister Giustina Olha Holubets’ Italian presentation. The Ukrainian religious sister, who works as a geneticist at the University of Lviv, helped to found “Imprint of Life,” a perinatal palliative care center in Ukraine.
“Imprint of Life” offers grief accompaniment, individualized birth plans, the sacrament of baptism, and burial, as well as respectful photos, footprints, and memory books to help families cherish their brief moments with their child. Their motto is “I cannot give more days to your life, but I can give more life to your days.”
There are now more than 300 hospitals, hospices, and ministries providing perinatal palliative care around the world.
Many families facing these diagnoses have to decide if they will seek extraordinary or disproportionate medical care for their child after birth.
According to the Catechism of the Catholic Church, “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘overzealous’ treatment. Here one does not will to cause death; one's inability to impede it is merely accepted.”
Ministries like Alexandra’s House, a perinatal hospice in Kansas City, Missouri, provide counsel and grief support to parents as they face these difficult medical decisions. They also connect families with a network of other parents who have had a terminal prenatal diagnosis.
“Most of the families stay in contact indefinitely,” said MaryCarroll Sullivan, nurse and bioethics adviser for the ministry.
The book, published by the Vatican’s Publishing House, includes Pope Francis’ speech from his meeting with the conference participants in the Vatican’s Apostolic Palace.
In this speech, Pope Francis said that selective abortion of the disabled is the “expression of an inhumane eugenic mentality that deprives families of the chance to accept, embrace and love the weakest of their children.”
“Fear and hostility towards disability often lead to the choice of abortion, presenting it as a practice of ‘prevention,’” the pope said on May 25, 2019.
Pope Francis also thanked the perinatal hospice providers for creating “networks of love” to which couples can turn to receive accompaniment with the undeniable practical, human, and spiritual difficulties they face.
“Your witness of love is a gift to the world,” he said.
“Caring for these children helps parents to process their mourning and to understand it not only as loss, but also as a stage in a journey travelled together. They will have had the opportunity to love their child, and that child will remain in their memory forever,” Pope Francis said.
“Those few hours in which a mother can cradle her child in her arms leave an unforgettable trace in her heart.”