9-month-old to be taken off life support against mother's wishes at Cook Children's

Nov. 10--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.

"We don't know why," Tye Brown, Trinity Lewis' cousin, said. "We are just asking for the opportunity to give Tinslee a fighting chance. And we're not being given that."

Officials at Cook Children's said they believe Tinslee is in pain and there is nothing more that 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."

Explore where you live.

Subscribe for 12 FREE weeks of unlimited digital access.

SAVE NOW

The hospital planned to take Tinslee off life support Sunday night, but a judge granted the family a temporary restraining order prohibiting it from doing so. The family now has until Nov. 22 to move her to another facility.

Tinslee's condition

Tinslee was born prematurely with a rare heart defect called an Ebstein's 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 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 10-Day 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 on Sunday 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 the baby more time to get better. Brown said no one has explained to them a diagnosis for Tinslee.

"Our questions haven't been answered," she said. "We don't have the information we've asked for."

Judge grants more time

On Sunday evening, a judge granted Tinslee's family a temporary restraining order against the hospital, prohibiting physicians from ending Tinslee's treatment until at least Nov. 22.

At a press conference outside the hospital, Texas Right to Life members and local state legislators said --

The quest for a transfer

Tinslee's family and several advocacy groups are trying to find a way to transfer Tinslee to another hospital or have her put on the equipment they need to take her home.

"Our game plan is to leave her on the ventilator and have them give us until Wednesday to get her transferred out of here," Brown said. "We want to get her home. And that's all we're asking them to do."

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. "Now, Baby Tinslee's mother is in a race against the clock to save her daughter."

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.

Cook Children's also faced backlash in October 2018 when physicians ruled to take 9-year-old Payton Summons off life support. Attorneys for the hospital said Payton 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 on 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. Those opposed to the bill, 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."

Related stories from Fort Worth Star Telegram

fort-worth

9-year-old girl who had been on life support at hospital dies Friday evening

October 19, 2018 9:37 PM

fort-worth

Hospital's lawyers appeal court's decision to leave girl on life support another week

October 17, 2018 12:45 PM

fort-worth

Good wishes pour in for family of 9-year-old girl who died while on life support

October 22, 2018 11:14 AM

fort-worth

Texas hospital must keep girl on life support, appeals court says

October 19, 2018 6:00 PM

------

Kaley Johnson

817-390-7028

Kaley Johnson is a breaking news and enterprise reporter. She majored in investigative reporting at the University of Missouri-Columbia and has a passion for bringing readers in-depth, complex stories that will impact their lives. Send your tips via email or Twitter.

Comments

___

(c)2019 the Fort Worth Star-Telegram

Visit the Fort Worth Star-Telegram at www.star-telegram.com

Distributed by Tribune Content Agency, LLC.