BATON ROUGE, La. (WAFB) - Tucked away inside the brand new Our Lady of the Lake Children’s Hospital, a facility dedicated to the healing of the smallest patients, is a place to say goodbye when medicine and miracles fall short. That space has occupied the minds and hearts of Kim and Trey Bowman for nearly a decade.
In 2011, doctors diagnosed their 7-year-old daughter, Bella, with a brain tumor. She underwent 11 months of procedures and treatments, but just before Christmas, they received the devastating news that Bella, now 8, would not win her fight. Doctors told the Bowmans Bella’s life was measured in days, and her parents and younger sister made the most of every second.
“It was treated as though every day was Bella’s day. We could do whatever we wanted to do with her and for her,” said Bella’s father, Trey.
The Bowmans got ten final days with their little girl, each one spent at Our Lady of the Lake Children’s Hospital. They tried to squeeze a lifetime of memories into those precious hours. They transformed her hospital room to look more like home and filled it with Barbie dolls and Christmas decorations. She had her first communion. Miss Louisiana stopped by for a visit, and Bella even got to watch one of the Alvin and the Chipmunk movies before it was released in theaters.
Those are memories the Bowmans say are among their most treasured.
“I remember a nurse told me I could hold her. I was like, ‘Really? I’m scared.’ I didn’t want her breathing to be labored or anything and she said, ‘I think you should hold your baby.’ I have the most amazing picture of me holding my baby for the last time,” said Bella’s mother, Kim.
Bella died December 23, 2011. Since then, her family has dedicated their lives to helping other young patients battling brain cancer. They established the Bella Bowman Foundation to raise money for research, to provide comfort for patients, and to support other families facing the impossible. Their latest mission is helping create a room inside the new OLOL Children’s Hospital to help families begin palliative care. It’s called Bella’s Room.
Bella’s Room sits in a back corner of the same wing where cancer patients are treated through the St. Jude affiliate clinic. It’s at least twice the size of an average patient room, with a tall window that lets in lots of light. Every design was made with families in mind to provide the most comfort possible environment during end of life care for a child.
"We just know that this is all you have. After your child is gone, that’s the last memories. There’s no more pictures, no more last conversations and memories,” said Kim. “We want to create as many amazing memories as we possibly can for the whole entire family and for the child that’s going through all this."
In cases where end of life care is needed, the family can be connected to the Bella Bowman Foundation, which will work with the hospital’s child life specialists to decorate Bella’s Room however the patient wants, and capture every memory they can, from hand prints to recording heartbeats.
“As child life specialists, we are really focused on legacy and memory making at end of life, so a lot of things that we do is just try to capture those things for the families that they’re not going to have the opportunity to create when their child is gone,” explained child life specialist manager, Sharon Wesberry.
Wesberry and her team also work to bridge the gap between families and the medical processes. They work with parents, siblings, and even friends to explain what’s happening, why, and to provide ways to cope and understand.
The Bowmans hope that with Bella’s Room, they can help pass on the lessons they learned from their time saying goodbye and let grieving families know they’re not alone.
“The loss of a child is unbearable. It’s almost difficult to comprehend, but if you’re going to go through it, we want to be there in certain ways that we know were effective for us,” said Trey.
The Bowmans also feel Bella has been a part of this project the whole time. When it came time to picking a room, the Bowmans discovered that perfect space just happened look out towards their home. When conditions are just right, you can even see Bella’s old bedroom window from the hospital room.
The new children’s hospital is schedule to open to the public Saturday, Oct. 5.