The high-profile case of Tinslee Lewis, the Fort Worth child who has been on life support at Cook Children’s Medical Center since she was born, heads back to court Tuesday morning.
A court of appeals will decide whether the baby must remain on life support as her case plays out.
“I see a fighter. I see a girl that loves her family and is letting them know she’s still here and she’s fighting,” said Jennifer Hall, vice president of Protect Texas Fragile Kids.
Lewis has marked a milestone when she turned one year old Saturday.
“They had her dressed up in a tutu, in a 'Trolls' birthday shirt, in pink pigtails,” said Hall, looking at a photograph of the infant in her hospital bed.
The grassroots group advocates for medically complex children in Texas and considers the Lewis case the most high-profile case they’ve had in their four years.
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Hall and Lewis' mother insisted the baby was improving, despite the hospital’s effort to remove her from life support in the fall, triggering a legal battle.
“I think she has a will to live and she’s shown that by being here for three more months and making small improvements,” Hall said.
Lewis was born prematurely and with a heart defect.
She developed other complications, including lung disease, but her family said they believed she can recover.
However, Cook Children’s Medical Center has sustained the baby cannot recover and is only suffering.
New court documents state even nurses are finding it difficult to handle the stress of caring for Lewis, believing her condition is so fragile even a simple touch could trigger "a dying event."
Her mother argued while Lewis is often heavily sedated, she has moments where she is alert, grabs her finger and even watches children’s cartoons on her cell phone.
“She’s a sick child and she’s medically complex, but her life has value and her family wants to have a voice in her care,” Hall said.
For many, this is a battle over choice.
There are those who see a beautiful but suffering baby and those who only see hope.
“Everyone’s definition of suffering is not the same,” Hall said. “Only God knows who’s going to make it and who’s not. She’s giving her family signs that she’s fighting and they want to fight for her.”
Lewis' family and advocates are still trying to find another hospital that will take the infant.
While none have officially agreed, Hall hinted they may be getting closer to having a facility accept the baby.
In the meantime, Lewis' family is calling on Cook Children’s to perform a tracheotomy on her or allow an outside doctor to come in and perform it.
They believe it would improve her chances of one day going home.
The court of appeals will hear arguments at 10 a.m. on Tuesday.
