Mom of baby on life support at Cook Children’s gives update on legal battle, condition
The mother of an 11-month-old baby at Cook Children’s Hospital in Fort Worth said Monday she wants her baby transferred out of the hospital immediately.
Trinity Lewis, 20, has been fighting Cook’s decision to remove life-sustaining care for her child for several months. The legal debate over Tinslee Lewis’ life has prompted restraining orders, the recusal of a judge and statements from politicians across Texas.
“Just like any parent, I want the best for my daughter. I definitely respect Tinslee’s physicians’ abilities and other options, but I have not had a voice in her current plan,” Lewis said at a press conference Monday. She wore a black shirt with Tinslee’s name printed across it in red and white letters. “‘I know that my daughter’s medical needs are complex, but I am ready for someone to give her a chance.”
Tinslee was born prematurely in February 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. Lewis previously described her daughter’s “sassy” personality and said she likes the movie “Trolls” and having her nails painted.
In a prior statement, the hospital said Tinslee’s condition was “most certainly fatal,” painful, and that she requires full respiratory and cardiac support, deep sedation and to be medically paralyzed.
Outside the hospital Monday, Lewis, who is pregnant with a second child that is due in February, spoke to reporters about her daughter’s condition. The press conference was organized by anti-abortion group Texas Right to Life and Protect TX Fragile Kids, a group made up of parents of medically fragile children.
Trinity Lewis said Tinslee is doing well and is awake most of the time. She is only sedated so she does not pull out her tubes, Lewis said.
“Because of the medicine she receives and because I watch her every day in the hospital, I do not think Tinslee is suffering,” Lewis said.
Tinslee is being treated under Medicaid, Lewis’ lawyer, Joe Nixon, said Monday.
At a hearing in early December, Cook Children’s and Lewis’ attorneys laid out arguments before Texas Fourth District Court of Appeals Chief Justice Sandee B. Marion as to whether or not the hospital should be able to end Tinslee’s life support.
Cook Children’s physicians explained that they believe Tinslee’s condition is not going to improve, and keeping her alive with a ventilator is causing her unnecessary pain.
Judge’s ruling
On Dec. 2, Marion ruled Cook’s could end Tinslee’s life support. The next day, the Texas Second Court of Appeals granted an emergency motion from the family halting that decision while Lewis appeals.
Lewis said she wants to be able to make the decision about her daughter’s life, not the hospital.
“I know that everybody has to pass away, but my fear is them pulling the plug on her with me not being able to make the decision first,” she said.
On Friday, the Lewis family revoked their decision to allow Cook Children’s to publicly speak about Tinslee’s case, the hospital said in a statement.
“This remains an emotional and difficult situation for everyone involved. Cook Children’s medical team remains committed to caring for every patient and family we serve,” the statement said.
At Monday’s conference, Lewis addressed the decision.
“To be completely clear, Cook’s does not have my permission to publicly talk to the media about my baby’s medical information,” she said.
Nixon said he will file a brief with the appeals court by Jan. 23. The brief will argue against the law that allowed Cook Children’s to move to end Tinslee’s life support — the Texas Advance Directives Act.
The act allows an ethics committee to choose to end treatment if doctors determine care is futile or medically inappropriate. The hospital can end a patient’s treatment 10 days after a family is notified, unless the family can find another hospital to take the patient.
Nixon has argued the act is unconstitutional because it denies patients and their families the right to due process.
“We’re all in danger here if this law stays in place, because we’ve taken away the decision of life away from the patient or the patient’s family and given it to a nameless, faceless committee,” he said.
Supporters of the Texas Advance Directives Act say it allows physicians to make a difficult, but responsible, decision that families may not be able to accept.
Potential transfer
Tinslee’s family and the hospital have been searching for another hospital to take the baby since October, when an ethics committee told Lewis — after several meetings with Lewis and Tinslee’s doctors — they would take Tinslee off life-sustaining care in 10 days.
At Monday’s press conference, Hannah Mehta with Protect TX Fragile Kids said the family is still searching for another facility to take Tinslee. She said the transfer process is complicated and takes time.
In a previous statement, Cook Children’s said the hospital reached out to at least 19 other facilities to potentially transfer Tinslee, but said each facility agreed with Cook Children’s diagnosis.
Lewis wants to transfer Tinslee to another facility for palliative care — or care that focuses on improving someone’s quality of life — and eventually transition her to home care. She also has requested Cook Children’s perform a tracheotomy on Tinslee, which would increase her chances of transitioning to home care.
However, Jay Duncan, a pediatric cardiologist at Cook Children’s, said in his testimony in December that it is not safe for Tinslee to receive care from a home-care nurse because her condition and care are so complicated.
Fort Worth Catholic Diocese Bishop Michael F. Olson offered to help the family find “compassionate and appropriate care” at a Catholic health care facility in a statement on Jan. 2.
Olson said in the statement that “healthcare decisions involving the vulnerable and severely ill are best made in the patient’s interests by family and healthcare providers and not by judges, by politicians, or lobbyists.”
He said the offer is made out of respect for Tinslee’s life and to “prevent and relieve her suffering.”
Others weigh in on the case
The case has drawn the attention of Texas’ top officials and many organizations.
An official from the Texas Attorney General’s Office spoke at the hearing in December, saying the Attorney General’s Office agrees the statute violates due process. In November, Attorney General Ken Paxton filed a brief in support of Tinslee and argued that the statute is unconstitutional.
On Friday, Abbott and Paxton sent a letter to the Second Court of Appeals that urged the court to grant an emergency stay until the family’s appeal could be resolved.
When the stay was approved, Paxton celebrated the news on Twitter. He thanked the court and urged prayers for Tinslee’s family.
In a joint statement Thursday, Abbott and Paxton called Tinslee’s case “complex and heartbreaking” and signaled their willingness to support the case if it reached the Supreme Court.
“If the Court does not stay that order and preserve the status quo, baby T.L. will suffer the ultimate — and jurisdiction-threatening — irreparable harm: She will die. Simply put, this case presents a life-or-death decision,” the Friday letter read.
Lt. Gov. Dan Patrick tweeted his support for Lewis’ appeal Monday.
Tinslee’s case has renewed calls for the law’s repeal, and last month 16 state lawmakers signed a letter urging the governor to call a special session to address the law at the center of the case.
Abbott has the sole authority to call lawmakers back for a special legislative session, and while he has espoused his support of Tinslee’s case, he has yet to do so.
Texas Alliance for Life, another anti-abortion group, has publicly supported TADA and the hospital’s decision in Tinslee’s case.
After Marion’s ruling against Tinslee’s family, the group said in a statement that TADA “is good public policy, it is constitutional, and it provides a balance between the patient’s autonomy and the physician’s conscience protection rights to do no harm. We are praying for the family and all involved in Tinslee’s care.”
The group and nine other Texas organizations signed an amicus brief on Dec. 11 in support of the law. The other groups included the Texas Catholic Conference of Bishops, Texans for Life and the Texas Medical Association.
State Rep. Garnet Coleman, a Democrat from Houston who was one of the original authors of the Advance Directives Act 20 years ago, said in a previous interview that that despite pushes to change the law nearly every session, the law is sound.
“I stand by the law as I passed it,” Coleman said. “It works the way it’s supposed to work.”
Legal battle
The following is a timeline of the legal battle between Cook Children’s and Tinslee’s family:
▪ Oct.: Cook Children’s officials tell Trinity Lewis, Tinslee’s mother, they are planning an Ethics Committee meeting about Tinslee’s treatment
▪ Oct. 30: The committee makes an unanimous decision to end Tinslee’s treatment.
▪ Oct. 31: The committee gives Trinity Lewis a letter saying treatment for Tinslee will end in 10 days.
▪ Nov. 10: Joe Nixon, the Lewis family’s attorney, files for a temporary restraining order against the hospital. Judge Alex Kim grants the order, which is set to expire on Nov. 22.
▪ Nov. 19: Kim extends the restraining order to Dec. 10.
▪ Nov. 20: Cook Children’s files a motion to have Kim recused from the case, saying he is biased and violated legal procedure by assigning himself the case.
▪ Dec. 4: Judge Kim is recused from the case at a hearing.
▪ Dec. 10: A temporary injunction hearing is set for Dec. 12. under Chief Justice Sandee B. Marion of the Fourth District Court of Appeals.
▪ Dec. 12: The temporary injunction hearing takes place.
▪ Jan. 2: Judge Marion rules Cook Children’s can take Tinslee off life support.
▪ Jan. 3: Texas Second Appeals Court approves emergency motion to keep Tinslee on life support while family appeals.
This story was originally published January 6, 2020 at 5:21 PM.
