A mother awaiting a court decision in her battle against Cook Children's Medical Center's plan to end life-sustaining treatment for her 11-month-old daughter spoke out Monday after revoking the medical center's permission to talk about her child's treatment.
"This situation takes away my job as a mother and lets other people who don't even know her decide whether her life is worth living," Trinity Lewis said during a news conference outside the hospital. She said she doesn't believe her daughter is suffering.
Doctors at Cook Children's in Fort Worth insist Tinslee Lewis is in pain and will never recover. They had planned to remove Tinslee from life support Nov. 10 after invoking the state's "10-day rule" that can be employed when a family disagrees with doctors who say life-sustaining treatment should be stopped. The law stipulates that if the hospital's ethics committee agrees with doctors, treatment can be withdrawn after 10 days if a new provider can't be found to take the patient.
Texas' Second Court of Appeals on Friday said the hospital can't remove Tinslee from life support until the court makes a final ruling in the case. A Tarrant County judge on Thursday denied the mother's request to issue an injunction in the case.
"I know that my daughter's medical needs are complex but I am praying for someone to give her a chance," Lewis said at the news conference, which was organized by Texas Right to Life, an anti-abortion group, and Protect TX Fragile Kids, a group made up of parents of medically fragile children.
Tinslee has been at Cook Children's since her premature birth. The hospital has said she has a rare heart defect and suffers from chronic lung disease and severe chronic high blood pressure. The hospital has said she has been on a ventilator since going into respiratory arrest in early July and requires full respiratory and cardiac support, deep sedation and to be medically paralyzed.
During a news conference on Monday morning, the child's mother and attorney insisted Tinslee is awake sometimes, is alert and has even started to watch children's videos.
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"Last night the baby was watching Puppy Dog [Pals]," said Nixon. "She loves having her nails painted."
"Yeah, she be wanting to pick her up, she'll be like put her hands up to like get her," added Lewis.
Baby Tinslee has a tooth coming in and will turn a year old in February, according to the family.
At a hearing last month, Dr. Jay Duncan, one of Tinslee's physicians, testified that the girl is in pain and that treatment was no longer benefiting her.
Lewis said the hospital is no longer allowed to speak to the media about Tinslee. A hospital spokeswoman said they were informed Friday that permission to speak about the case was revoked.
Efforts to find another facility to take the girl have been unsuccessful. The hospital said it has reached out to more than 20 facilities. Hannah Mehta of Protect TX Fragile Kids said their search for another facility is ongoing.
Mehta claimed Tinslee's family has been provided medical information that is three months old.
"Which made it very problematic for physicians to provide an opinion on her current status," Mehta said.
For now, the family is calling on Cook Children's to perform a tracheotomy on the infant or allow an outside doctor to perform it, believing it would improve her chances at one day going home.
The family's attorney said it was not known when the case will be decided, but added that their legal brief is due Jan. 23.
"We're going to brief the [appeals] court. The court will hear our argument and the court will make a decision and Cook must maintain life-sustaining care throughout that time," he said. "We're all in danger here if this law stays in place because we've taken away the decision of life that belongs to either the patient or the patient's family and given it to a nameless, faceless committee. We don't want that."
NBC 5's Maria Guerrero contributed to this report.
