HARKER HEIGHTS, Texas (KXXV) — A Salado mother is protesting at Seton Hospital, fighting for new legislation to improve care for sickle cell patients after her daughter's death.
Cassandra Lewis lost her daughter Kyla to complications from sickle cell disease about 3 months ago. Lewis said those who knew Kyla would remember her for her jokes, bright smile and eye for design — but beneath it all, Kyla's daily life was often filled with pain.
"She's my strength because this is very, very hard. She was my baby, so this is hard." Cassandra Lewis said.
"She's always learned to mask her pain, you know, pain could be at a 10, but it may not look like a 10." Lewis said.
From age 7, Kyla received special infusion treatments. But when the family moved to Texas, Lewis said the technology wasn't matched, causing Kyla to develop blood clots and increased pain.
"No parent should have to bury their child for a disease that has come so far in advanced care." Lewis said.
In July, Kyla's pain was severe and she went to Seton Hospital in Harker Heights. Lewis said the experience felt demeaning.
"I felt as if he thought she was drug seeking. That's not why we were going to Williamson County. You're not addressing her pain. I don't know what's wrong with my child. Kyla couldn't even walk." Lewis said.
Within hours of having a high heart rate and low oxygen, Kyla died in the hospital room after going to the Round Rock location. The cause of her death remains unknown.
Lewis is fighting for Kyla's Law, which would require more education and different treatment for sickle cell disease.
"These sickle cell patients' pain tolerance is extremely high. They've been dealing with this since birth and so that needs to be reevaluated to remove the stigma that they are drug seeking because that is not the case." Lewis said.
I reached out to the hospital, which provided this statement:
"While patient privacy laws prevent us from commenting on the circumstances surrounding an individual patient's care, our priority is to provide safe, high-quality and compassionate care. We have processes in place to listen to patient and family concerns and work directly with those involved to address them."
Lewis said she will continue to fight and hopes to get Kyla's Law implemented within the next few years.
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