Trinity Lewis said all she wants is for her 9-month-old daughter, who is on life support, to have a chance to get better. But on Sunday, physicians at Cook Children’s Medical Center in Fort Worth planned to stop all treatment for Tinslee Lewis, she said.
On Sunday evening, a judge granted Lewis and her family a temporary restraining order, prohibiting the hospital from ending Tinslee’s treatment. The family now has until Nov. 22 to move her to another facility.
“We are just asking for the opportunity to give Tinslee a fighting chance,” Tye Brown, Trinity Lewis’ cousin, said. “And we’re not being given that.”
Officials at Cook Children’s said they believe Tinslee is in pain and that nothing more can be done for her medically.
“While we believe every child’s life is sacred, we also believe that no child should be sentenced to a life of pain,” said Winifred King, assistant vice president of public relations for Cook Children’s Health Care System, in a statement. “Removing this beautiful child from mechanical ventilation is a gut-wrenching decision for Cook Children’s physicians and staff; however, we feel it is in her best interest to free her from artificial, medical intervention and suffering.”
Tinslee was born prematurely with a rare heart defect called an Ebstein anomaly. She also suffers from a chronic lung disease and severe chronic pulmonary hypertension, and has undergone several complex surgeries. She breathes with the assistance of a ventilator and is sedated but conscious, the family says, and responds to touch and stimulation as any baby would.
Cook Children’s has evoked a 10-Day Rule on Tinslee, part of a Texas law that allows hospitals to end life-sustaining treatment for patients, even if the family does not want them to. The rule is meant for cases where physicians determine treatment is futile. The family then has 10 days to transfer the patient to another hospital before treatment ends.
Lewis, who is 20 years old, said the hospital’s decision was sudden; she said doctors and nurses told her in October they didn’t believe her daughter would get better and evoked the 10-Day Rule at 11:30 p.m. on Oct. 31.
Under the rule, the deadline when her daughter’s treatment was set to end at Cook Children’s was Sunday night.
However, at 3 p.m. Sunday, doctors told Tinslee’s family they had decided not to take Tinslee off the ventilator that night.
In order to stop Tinslee from pulling out the lines connecting her to the ventilator, doctors have to keep her constantly paralyzed and sedated, King said in an email. When she appears alert and moving, her movements are the result of being weaned off the paralyzing drugs, she said. They believe she is in pain when she’s not sedated.
“In the last several months, it’s become apparent her health will never improve,” King said in a statement via email. “Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated. Without life-sustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.”
However, Tinslee’s family disagrees and said they want to give her more time to get better. Brown said no one has explained a diagnosis to them.
“Our questions haven’t been answered,” she said. “We don’t have the information we’ve asked for.”
A little more time
On Sunday evening, Tarrant County District Judge Alex Kim granted Tinslee’s family a temporary restraining order against the hospital, prohibiting physicians from ending Tinslee’s treatment until at least Nov. 22.
If Tinslee is not transferred to another hospital, Cook Children’s could potentially move forward with ending treatment when the family’s restraining order expires.
A spokeswoman for Cook Children’s said the hospital had no additional statement in regards to the temporary restraining order.
At a press conference outside the hospital, Lewis said she was relieved and hopes to find another hospital to transfer her daughter to for treatment. She described her daughter as a happy baby who loved to cuddle.
“She’s a fighter,” she said. “She’s been through so much.”
Family member Beverly Winston said they believe if there’s even a little bit of hope, it’s worth giving Tinslee a chance.
“Regardless of the reason, or what the law is, she deserves a chance to fight for her life,” she said. “And she’s got a troop that will help her.”
Winston said the hospital has taken “very good care” of Tinslee up until this point, and the family appreciates the nurses and doctors who helped them over the past nine months.
Tinslee’s family and several advocacy groups are trying to find a way to either transfer Tinslee to another hospital or have her put on the equipment they would need to take her home.
At Sunday night’s press conference, State Rep. Tan Parker, R-Flower Mound, said he wanted to “put out an APB to any institution in this country that believes they have the skill set to help baby Tinslee.”
Texas Right to Life, which provided a lawyer for the family, and Protect Texas Fragile Kids were helping the family fight the hospital’s decision.
“The hospital committee cited no physical health reason for their decision to seize Tinslee’s ventilator against her mother’s will but instead cited their own ‘quality of life’ judgments,” Texas Right to Life said in a statement.
Lewis and Brown said Cook Children’s contacted other hospitals to potentially transfer Tinslee to in October, but has not done so recently. Lewis said she requested to be included in the conference calls to other hospitals, but was only allowed to be on one call.
“We’re both having a difficult time right now,” Brown said “There has been no agreement for reasonable accommodation. We’re both devastated.”
King’s statement included a list of 19 hospitals Cook Children’s has reached out to see if any would be willing to accept Tinslee as a patient. Each said Cook Children’s assessment was correct and “they feel there is nothing more they can provide to help improve this precious child’s life.”
The 10-Day Rule
The 10-Day Rule is part of the Texas Advance Directives Act, which was signed into law in 1999 by then-Gov. George W. Bush.
Under the law, if a doctor deems a patient’s treatment is futile, an ethics committee of other hospital employees have the ability to review the case and either agree or disagree with the physician. If an agreement is reached, the committee gives the family 10 days to transfer the patient.
At Sunday’s press conference, Rich DeOtte, who is on the board of directors for Texas Right to Life, called the 10-Day Rule “one of the worst laws in the country” and called for Gov. Greg Abbott to call a special session to repeal the rule.
“Under the 10-Day Rule, criminals on death row have more rights than patients in Texas hospitals,” he said.
DeOtte said a hospital does not “have the moral authority to make these decisions for their patients.” He also commended medical professionals, who he said are “pulling off miracles every day,” and said some physicians are completely unaware of the 10-Day Rule.
Parker also said the 10-Day Rule needs to change to give hospitals, patients and families more time to work together in situations such as Tinslee’s.
“The 10-Day Law doesn’t fit with Texas values,” he said.
In October 2018, Cook Children’s faced backlash over another case in which they planned to end treatment. Physicians at the hospital ruled to take 9-year-old Payton Summons off life support, and attorneys for the hospital said she was legally brain dead and riddled with cancer.
Payton’s family filed a temporary restraining order and filed a motion to extend the girl’s time on life support. A judge granted the girl’s parents an additional week to seek out a health care facility that would care for their daughter.
Payton died Oct. 22, just a few hours after a Fort Worth appeals court denied a writ that would have allowed doctors at Cook Children’s to disconnect her from the ventilator.
In May, the 10-Day Rule came under fire when a hospital in Houston cut life support for 61-year-old Carolyn Jones against her family’s wishes. The hospital gave the family 10 days to transfer Jones, who had been on a ventilator for six months, Channel 12 News in Beaumont reported.
When the hospital took Jones off a ventilator, she survived overnight. The family said that gave them enough time to transfer her to another facility, where she was still recovering as of May, according to the Texan.
Sen. Bryan Hughes, R-Mineola, proposed legislation — SB 2089 — that would extend the 10-day rule to 45 days, but the bill did not pass. , such as the Texas Hospital Association, said it “would prolong and increase suffering for families and loved ones without medical benefit” and “mandate the provision of potentially unethical, medically inappropriate procedures, outside the standard of care services.”
In a statement, Texas Right to Life said the 10-Day Rule “forces everyday Texans to race against the clock to save their loved ones.”