Perinatal Hospice

One of the hardest cases for continuing with a pregnancy arises when prenatal testing reveals that the baby has a fatal condition.  But parents who take this extraordinarily brave step are increasingly finding support.  The NYT, in an article entitled "A Place to Turn When a Newborn is Fated to Die," reports that:

Most couples choose to have an abortion when they learn that the fetus has a fatal condition. But experts say about 20 to 40 percent of families given such diagnoses opt to carry the pregnancy to term, and an increasing number of them . . . have turned to programs called perinatal hospice for help with the practical and spiritual questions that arise.

It's amazing to me what grace some of the parents report finding in the sorrow of this experience.  The article ends with:

Alaina’s birth and the family’s discussions with Mr. Lund have made them think a great deal about God’s role.

“When we were expecting Alaina, people said, ‘You’re in our prayers,’ ” Mrs. Kilibarda said. “But people were praying to make it a mistake, to make it all better for us.

“We weren’t asking, ‘Make it all better,’ ” she said. “God doesn’t come down and touch you to heal you. He sends people to be with you.”

Hospice workers encouraged the Kilibardas to make memories with Alaina. So while parents of healthy newborns might avoid crowds or other situations where their children might get sick, the Kilibardas have taken their daughter to their favorite coffee shop, the houses of friends and big family get-togethers. They want to know, they said, that she was once in places that mean something to them, like the cold forests of northern Minnesota where Mr. Kilibarda grew up and where they recently took her.

“I want to go through this with my eyes open,” he said, explaining why he turned to the hospice program. “I want to feel every ounce of pain, of happiness, because if I avoid it now, it will come back to bite me. I want to experience grace. What does that mean, because it’s such a vague term?

“I’m still trying to figure it out. I think I’ll experience it when this event comes complete,” he said, as his voice cracked, “when she passes.”

The article quotes a friend of mine, Amy Kuebelbeck, a major force in the perinatal hospice movement.  She's written an absolutely beautiful book about her experience, Waiting with Gabriel:  A Story of Cherishing a Baby's Brief Life.