Common Bonds helps in childbirth crises

Kathie Peterson's daughter, born with Down syndrome two decades ago, is thriving. But her birth was a crisis for Peterson, who didn't know what she would need for her baby or where she could go for help.

She has spent the past five years helping parents in similar crises at LDS Hospital. They are parents with premature babies, those whose children were born with disabilities or life-threatening illnesses, infections and anomalies. She coordinates a program that provides support to parents who have children in the newborn intensive care unit at the hospital, a concept that is popular nationwide.

"It's very parent-based," said Peterson, parent support coordinator in the newborn ICU. "I am a parent, and when my little girl was born, the newborn ICU took very good care of her, but there was no one here for me. No one to answer my questions or just put an arm around me and say it was going to be OK. There were social workers, but mine were not social issues. I needed TLC" — tender, loving care.

In the community, she became active with groups for the disabled and decided she could share what she learned with nurses at the hospital so they could pass it on to other parents. She did a series of in-service sessions with the nurses, and they all agreed there was more that they could to to be parent-friendly, family-centered and help those in crisis get through it.

It turned into a job for Peterson.

The key was finding parents who had been through the ups and downs of newborn intensive care themselves. The program was patterned after existing and similar projects at University Hospital and others around the nation. Intermountain Healthcare's first program opened up at Utah Valley Regional Center in Provo, and McKay-Dee in Ogden now has one, as well. Primary Children's Medical Center is in the process of trying to revive its program, but federal privacy laws have created some challenges and barriers for all of them. It's much harder for the parents who are spending time in the intensive care units to find others there with similar challenges and fears.

It's not a formal, pair-them-up mentoring program, although Peterson has about 20 volunteers who have spent a lot of time with their infants in the NICU in the past few years and make themselves available to the newcomers. Instead, they offer a weekly parent discussion that includes specialists in development. They also talk about grieving and getting better.

"When you have a baby born early or with a disability," she said, "there's a grieving similar to when a baby dies. Lots of parents don't realize the depression, the despair, the anxiety are all grieving. They need to recognize that and then go on with loving that baby."