Lin Sue Cooney: When hospice care is needed for newborn babies

The Arizona Republic
June 28, 2017

It’s only natural to associate the word “hospice” with end of life—to envision a patient who is elderly and frail—someone who has lived a long, full life.

But what happens when care is needed before a baby draws its first breath—before life even begins?

Five years ago, when a desperate mom carrying a child with a life-limiting condition asked Hospice of the Valley for help, we created a unique perinatal support program. It embraces any family grieving the anticipated death of a baby still stirring inside a mother’s womb. These are families with crushed dreams, who still want to meet and hold their little one—even if the first time will also be the last time.

I can’t imagine that kind of heartbreak. Or the courage it took for Derrick and Maricela Kempf to share their story with me so other couples know where to find help. At their 20-week ultrasound, they were just hoping to keep the gender of their third baby a surprise. Instead they were told he “was incompatible with life.”

Maricela didn’t know what to think.

“We were shocked and confused—I felt like he was saying—well your baby’s not really a baby. It’s not real. We were shattered. Then we found Hospice of the Valley,”

Perhaps you didn’t know Hospice of the Valley offered this kind of support—or that families don’t pay for this community program. Pam Roman, our director of pediatric services, calls it “service to the human spirit.”

“Our families come to us feeling isolated and alone, so we support them holistically with nursing, physicians, social workers, child life specialists and grief counselors. This baby is precious to them and will always be their child regardless of how long they have together.”

Just as with hospice, the care is tailored to each family. Derrick and Maricela asked if their son could be born at home, not in a hospital. So our teams worked to get all the right people in place to make that happen. To make the home birth extra special, Pam arranged for one of our harpists to play soothing music during and after delivery.

In her words: “It’s what we do with our babies—we nurture them, we sing to them. This was something we could offer that was beautiful and comforting.”

Rafael came into the world peacefully and drew his last breath seven and a half minutes later. Yet Maricela remembers that day with happiness. “We were experiencing something so tragic, but in my memory, we were able to welcome Rafael with joy and peace and beautiful music in the background. We just felt so loved and honored.”

Derrick is grateful for the way the perinatal team seemed to rejoice in caring for them—lightening the burden.

“It let us focus on each other, love each other and just be a family. It was a gift.”

It's a gift that we want to share with every family on this difficult journey—because no one should face it alone.

Lin Sue Cooney is director of community engagement for Hospice of the Valley. She was a newscaster at 12 News for 31 years.