“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.
Kuelbeck 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 2 hours with her son, Gabriel, before he died after birth.
“It was one of the most profound experiences of my life,” Kuelbeck 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,” Kuelbeck wrote in “Waiting with Gabriel.”
Dr. Byron Calhoun, a medical professor of obstetrics and gynecology, who first coined the term “perinatal hospice” spoke at the conference. His 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.
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 ‘over-zealous’ 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, 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 advisor for the ministry.
There are now more than 300 hospitals, hospices, and ministries providing perinatal palliative care around the world.
Sister Giustina Olha Holubets, a geneticist at the University of Lviv, helped to found “Imprint of Life” a perinatal palliative care center in Ukraine that 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.
The motto of Imprint of Life is “I cannot give more days to your life, but I can give more life to your days.”
Pope Francis met with Sister Giustina and other perinatal hospice providers in the Vatican’s Apostolic Palace on the last day of the conference.
Subscribe to our daily newsletter
At Catholic News Agency, our team is committed to reporting the truth with courage, integrity, and fidelity to our faith. We provide news about the Church and the world, as seen through the teachings of the Catholic Church. When you subscribe to the CNA UPDATE, we'll send you a daily email with links to the news you need and, occasionally, breaking news.
As part of this free service you may receive occasional offers from us at EWTN News and EWTN. We won't rent or sell your information, and you can unsubscribe at any time.
The pope thanked them for creating “networks of love” to which couples can turn to receive accompaniment with the undeniable practical, human, and spiritual difficulties they face.
“Your testimony of love is a gift to the world,” he said.
“Taking care of these children helps parents to mourn and to think of this not only as a loss, but as a step in a journey together. That child will stay in their life forever, and they will have been able to love him,” Pope Francis said.
“Those few hours in which a mother can lull her child can leave a mark on the heart of that woman that she will never forget,” he said.