Mother tells judge her daughter on life support is 'sassy'

The mother of a 10-month-old girl on life support testified Thursday that her daughter is “sassy” and enjoys cartoons, as a Texas judge considered whether a Fort Worth hospital can remove life-sustaining treatment because doctors say the infant is in pain and her condition will never improve.

The family of Tinslee Lewis is asking an appellate judge to issue an injunction to ensure the Cook Children's Medical Center doesn't take her off life support.

This undated photo provided by Texas Right to Life shows Tinslee Lewis. [Photo: AP]

Doctors at the Fort Worth hospital had planned to remove Tinslee from life support Nov. 10 after invoking Texas’ “10-day rule,” which 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 The law stipulates that if the hospital's ethics committee agrees with doctors, treatment can be withdrawn after 10 days if a new provider can’t be found to take the patient.

Hospital officials said they've reached out to more than 20 facilities to see if one would take Tinslee, but all agreed that further care is futile.

Tinslee has never left Cook Children's since her premature birth. The hospital said she has a rare heart defect and suffers from chronic lung disease and severe chronic high blood pressure. She hasn't come off a ventilator since going into respiratory arrest in early July and requires full respiratory and cardiac support, deep sedation and to be medically paralyzed. The hospital said doctors believe she's suffering.

But Trinity Lewis, Tinslee's mother, testified Thursday that despite her daughter's sedation, she has a sense of the girl's likes and dislikes, describing her as “sassy.” Tinslee enjoys the animated musical “Trolls” and cries when it ends, the mother said. Tinslee doesn't like to have her hair brushed, Lewis said.

“I want to be the one to make the decision for her,” Lewis said, about removing her daughter from life support.

Dr. Jay Duncan, one of Tinslee’s physicians, described the girl's complex conditions and Cook Children’s efforts to treat her, which have included about seven surgeries. The cardiac intensive care doctor said that for the first five months of Tinslee’s life doctors had hope she might one day at least be able to go home.

But Duncan said there came a point when doctors determined they had run out of surgical and clinical options, and that treatment was no longer benefiting Tinslee. The girl is not likely to survive six more months, and the hospital has made “extraordinary” efforts to find another facility for her, Duncan said.

“She is in pain. Changing a diaper causes pain. Suctioning her breathing tube causes pain. Being on the ventilator causes pain,” he said.

Duncan said there had been “many, many” conversations with Tinslee’s family about her dire condition.

“We care a lot about Tinslee,"Duncan said." We care a lot about her family."

Tarrant County Juvenile Court Judge Alex Kim issued a temporary restraining order to stop the removal of life support on Nov. 10. But Kim was removed from the case last week after the hospital filed a motion questioning his impartiality and saying he had bypassed case-assignment rules to designate himself as the presiding judge.

After his removal, Judge Sandee Bryan Marion of Texas' Fourth Court of Appeals was assigned to hear the request for an injunction. It is unclear if Marion will issue a ruling on Thursday.

Cook Children's said hospital officials have been talking to Tinslee's family for months about concerns for her long-term survival. By August, the hospital said, everyone on the girl's care team agreed that further care was futile and by September they had begun talking to the family about withdrawing life support. With the doctors and her family still unable to resolve their differences, the ethics committee met Oct. 30 and unanimously decided further treatment was inappropriate.

Texas Right to Life, an anti-abortion group that opposes the “10-day rule," has been representing Tinslee's family. Spokeswoman Kimberlyn Schwartz said her group has also reached out to facilities and that they hope one will be found that can take Tinslee in.