A family in Fort Worth, Texas is trying to save the life of their 9-month-old daughter, who is currently on life support at Cook Children’s Medical Center. And without the family’s consent, the hospital has told the parents that they plan on pulling the plug and ending the child’s medical care.

Why?

Because they apparently don’t see any signs of improvement for the little one.

Trinity Lewis, the mother of baby Tinslee, is doing everything she can to keep her child on life support, in the hopes of one day seeing her cured. 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.

baby pulled off life support

“She’s a happy baby. She loves to cuddle. She’s a good baby,” said the little girl’s mother, Trinity Lewis.

 

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. She’s been on life support for nine months in total.

“She’s a happy baby. She loves to cuddle. She’s a good baby,” said the little girl’s mother.

The hospital intended to end support on the baby this week, but a court has intervened. This past Sunday, a judge granted Lewis and her family an order preventing the hospital from ending support at the time, but that order only lasts until November 22 of this year.

 “We are just asking for the opportunity to give Tinslee a fighting chance and we’re not being given that,” said Tye Brown, Lewis’s cousin.

According to Winifred King, Assistant Vice President of Public Relations for Cook Children’s Health Care System, there’s nothing more that can be done for the child.

A statement from the department contained the following: “While we believe every child’s life is sacred, we also believe that no child should be sentenced to a life of pain. 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.”

Cook Children’s has evoked a 10-Day Rule on Tinslee, which gives hospitals in Texas the authority to end life support when they’ve exhausted all possible methods of treatment. During that 10-day period, loved ones of patients can reach out to other facilities to see if they’ll continue treatment. The 10-Day rule was originally evoked on October 31, but the judge’s order extended that time to November 22 for the family.

 

The medical team providing care to Tinslee have her constantly sedated while also administering a drug-induced paralysis so the infant cannot remove life-sustaining devices. The medical team believes that the baby is in severe pain when medication wears off for brief periods.

King elaborated on the condition in another statement via email: “In the last several months, it’s become apparent her health will never improve. 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.”

Tinslee’s family disagrees with the prognosis, and Tye Brown thinks they haven’t been transparent.

“Our questions haven’t been answered. We don’t have the information we’ve asked for,” Brown said.

A spokeswoman for Cook Children’s said the hospital had no additional statement in regards to the baby or 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.

“Regardless of the reason, or what the law is, she deserves a chance to fight for her life. And she’s got a troop that will help her,” said Beverly Winston, a family member of Lewis.

State Representative Tan Parker from Flowermound 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.”

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Texas Right to Life, who secured an attorney for the Lewis family, and Protect Texas Fragile Kids are assisting the family to 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,” said Texas Right to Life.

Cook Children’s had allegedly called 19 other hospitals, per their spokesman King, to potentially transfer Tinslee to in October, but has not done so recently. Tinslee’s mother asked to be present on those calls, but was only allowed to be on one call. According to King, each hospital contacted agreed with the hospital’s assessment and “they feel there is nothing more they can provide to help improve this precious child’s life.”

 

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 Governor Greg Abbott to call a special session to repeal the rule.

DeOtte said at the press conference on Sunday: “Under the 10-Day Rule, criminals on death row have more rights than patients in Texas hospitals.”

Senator Bryan Hughes from Mineola proposed legislation in the past that would extend the 10-day rule to 45 days, but the bill didn’t pass and was opposed by the Texas Hospital Association. Their opposition to the bill was summarized as it “would prolong and increase suffering for families and loved ones without medical benefit.”

The THA further stated that extending the rule to 45 days would “mandate the provision of potentially unethical, medically inappropriate procedures, outside the standard of care services.”

No one wants to see a child die, that’s for certain. Yet, is there a specific number of days or attempts at care when hospitals can succumb to failure and relinquish care? It’s not an easy question to answer, and every case is very different. Our hearts and prayer go out to Tinslee, as we pray to see her pull through.

 


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