Kristin Murphy, Deseret News
Scores of multicolored ribbons are now fluttering in the light spring breeze, a testament to the young lives that were lost and the lessons learned at Primary Children's Medical Center.
Drawn by memories of the 161 children who died at the hospital in the past year, dozens of family members, friends and hospital personnel gathered Sunday for a memorial service. They listened as the names and faces of their loved ones appeared on a video screen, with soft music, flowers and fountains in the background, and the name of each child was read.
Many dabbed at tears, pulled children close and reflected on memories that included medical battles won and lost, questions about the future and how to cope with the loss.
After musical and verbal tributes by hospital staff, the assembly followed a lone bagpiper outside onto the hospital's third-floor, open-air patio, where they clutched packets of "forget-me-not" seeds and tied ribbons to the wrought-iron fence.
Stacy Polanshek's son, Damien, had health problems before birth and her doctor had suggested an abortion, she said. "I refused. I said I'm going to fight until he is done fighting." The battle for his life went on for two years and two weeks, with the baby in and out of the hospital on a regular basis.
As he got weaker, she finally had to decide when his time had come, she said. "We let him go on Thanksgiving Day. It was way too soon," but after doctors had told her he wouldn't survive outside the womb, "every day was just a gift.
"I don't know whether it would have been harder to lose him at birth, or to get to know him and then lose him." She makes regular trips to the Mt. Calvary Cemetery where he's buried, trying to work through the grief that is with her daily, she said.
She keeps pictures close by and she and her family members kiss the photo of Damien she keeps logged into her cell phone memory each night. What would she tell other parents who may have a terminally ill child?
"Just don't ever give up hope. Just fight for your kids and do what you have to do."
Brad and Angie Bailey's baby, Brooklyn Mae, was born in St. George where the family lived and all seemed normal at first. But 36 hours later, a nurse found the baby had more than a heart murmur.
She and her mother were flown to Primary Children's, where doctors found six different heart defects and three blood clotting disorders. Brooklyn would endure eight surgeries in her 10 weeks of life, as her parents' lives turned upside down.
"We had our own business so it kind of separated us," Angie said. "We lost our business and our home, and lived in the parking lot," of the hospital when they weren't living at the Ronald McDonald House. "But what we went through was nothing compared to what Brooklyn did."
The couple said they are grateful that doctors and nurses still remember them, and especially their daughter. "The staff here is absolutely amazing," Brad said. "They became our family and they're still our family. It helps to come and see them and today that was one of the highlights."
Jean Mannela couldn't praise hospital personnel enough following her experiences there. She lost two daughters, six years apart, at Primary Children's to a pulmonary condition whose origin was never determined, but doctors are looking at a genetic connection, she said. Rowelena was 6 years old and died during the 2002 Winter Olympics in Salt Lake City. Jolyn was 14 and died in April 2008.
Teams of doctors, nurses, social workers and child-life staff worked together to help ease her family through both daughters' treatment, Mannela said, praising the hospital's new palliative care team that was organized after Rowelena's death but in time to help them make decisions about Jolyn's end-of-life care.
Her lungs were failing and the final option was to list her for a double lung transplant. Her parents didn't feel good about it. "She agreed that it wouldn't be the best thing as well, and we were able to make that decision together. The palliative team helped us see things we didn't want to see and understand things we needed to understand."
"We were treated like gold. … If I could choose a place for my children to die, it would be Primary Children's. As hard as death is, it was a beautiful experience here. … The things they arranged for us. I can't tell you how grateful I am."
Orley Bills, the palliative care team leader, said the program was organized two years ago. While grieving for both children and adults is individual, he does see some similarities.
"Guilt is huge. (Parents) feel there is something they should be doing or didn't do that caused (the child's death). And all parents feel helpless. They try to control whatever they can control."
His job is difficult, as he helps people walk through the dying process and loses children he has become close to, Bills said. But the chance to "bear witness" of small lives that make a difference in the world is priceless.
"I bear witness every day to pain, to kindness, to grief and to love. That's my job, to bear witness to people's stories."
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