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A Mom Is Fighting To Keep Her 11-Month-Old Daughter On Life Support Despite What Doctors Say

Doctors say Tinslee Lewis, who was born with a rare heart defect, is suffering. But her mom believes she has a fighting chance.

Last updated on January 3, 2020, at 8:28 a.m. ET

Posted on January 2, 2020, at 3:29 p.m. ET

A Texas judge ruled Thursday that a hospital can take an 11-month-old girl born with a fatal medical condition off life support, despite her family's opposition.

Tinslee Lewis's family has been fighting for months to keep her on life support at Cook Children's Medical Center in Fort Worth. She was born prematurely in February 2019 with Ebsteinโ€™s anomaly, a rare heart defect, as well as chronic lung disease; she has been in the intensive care unit since her birth. She needs full respiratory and cardiac support, and the hospital said she continues to suffer despite her medical team's best efforts.

"To keep her alive, doctors and nurses must keep her on a constant stream of painkillers, sedatives, and paralytics. As a result, Tinslee is paralyzed at all times," the hospital told BuzzFeed News. "Even with medication and support, Tinslee has 'dying events' 2โ€“3 times per day. When she is in distress, Tinslee crashes and aggressive medical intervention is immediately necessary, which causes even more pain."

Officials at the hospital have been in talks with Tinslee's family about her poor prognosis for months.

In September, hospital officials consulted with an ethics committee about her health and sought help with addressing the "intractable differences of opinion" between Tinslee's doctors and her mom, Trinity Lewis, about her prognosis.

In the meantime, the hospital and Tinslee's family reached out to other medical facilities asking if they would accept her as a patient.

In late October, the ethics committee determined that further treatment for Tinslee "would be inappropriate and should not be continued." The hospital invoked a state law that gives families 10 days to find another medical facility for a patient before it withdraws life-sustaining treatment.

"Itโ€™s become apparent her health will never improve. Despite our best
efforts, her condition is irreversible, meaning it will never be cured or eliminated," the hospital said in its statement at the time. "But more importantly, her physicians believe she is suffering."

However, Tinslee's family won a temporary restraining order against the hospital to keep her on life support for several more weeks. They attended a court hearing with hospital officials in December and awaited Judge Sandee Bryan Marion's decision.

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Marion's ruling on Thursday denying the family a temporary injunction was a blow. Their legal team has already started working on an appeal.

Joe Nixon, the family's attorney, did not respond to a request for comment. And Tinslee's mother, Trinity Lewis, referred BuzzFeed News to Texas Right to Life, an anti-abortion organization working to help the family.

"The family's attorneys are filing an appeal ASAP today," Kimberlyn Schwartz, the group's communications director, told BuzzFeed News.

Along with Protect Texas Fragile Kids, an organization advocating for "medically fragile" children in the state, Texas Right to Life is working with Tinslee's family to continue finding another hospital to take her as a patient.

But, Schwartz said, the transfer process can be lengthy and difficult, especially when court proceedings are involved.

"Also keeping in mind insurance, medical records being moved from one place to another, financial concerns, things like that," she said. "It's not something that really can be rushed."

In a statement provided to BuzzFeed News, Protect Texas Fragile Kids acknowledged that though the case is complex and medically challenging, the 11-month-old deserves an opportunity for due process and time with her family.

"What is best for Tinslee should be a decision made by her family, not by a bureaucratic hospital ethics committee," the organization said. "There are other options in this case which would be far more ethical and humane than abruptly removing life support, and essentially causing Tinslee to suffocate to death in her motherโ€™s arms."

Lewis argues that despite her condition, her daughter is developing.

"She's got her favorite nurses and her favorite doctors, and she loves cuddling with her mom," Schwartz said, noting that Lewis is "in the hospital room all the time, basically."

The hospital said that although Tinslee "may sometimes appear alert and moving," it's in response to being weaned off paralyzing drugs.

"We believe Tinslee is reacting in pain when sheโ€™s not sedated and paralyzed," the hospital said.

Lewis, however, believes her daughter has a fighting chance.

"If Trinity believes that her child was in pain or was a hopeless case, that she would understand. [She] would let Tinslee go," Schwartz said. "But she doesn't believe that that's the case. The doctors at Cook Children's believe that her life isn't worth fighting for, but at the end of the day this is her daughter and this is her right to make that decision."

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