6 things to know about Tinslee Lewis, the Fort Worth infant on life support at Cook Children’s – The Dallas Morning News

A judge ruled in favor of Cook Childrens Medical Center, allowing it to take Tinslee Lewis off life support. But on Friday, the Second Court of Appeals granted an order to delay the end of treatment until the court could rule on the case.

A Texas appeals court ruled Friday that Cook Childrens Medical Center must continue care for an 11-month-old who has been on a respirator most of her life. But thats probably not the last word in the court battle over Tinslee Lewis care.

Tinslees mother and an anti-abortion political organization that has publicized the case have said they will continue to fight the hospitals efforts to take the baby off life support. State legislators and leaders have pledged to fight a 20-year-old law that allows care providers like the Fort Worth hospital to make end-of-care decisions when doctors and patients disagree.

Its a complicated and emotional case, fraught with questions about how life-and-death decisions are made and who gets to make them. At the core of the heartbreaking story is the question of whether theres any hope for the babys survival.

Doctors say no. The family wants to wait and see.

Meanwhile, Tinslee remains on life support with what the hospital calls a constant stream of painkillers, sedatives and paralytics. The hospital says she is regularly in severe pain.

Before she was born in February, according to Cook Childrens, the baby was diagnosed in utero with a congenital heart disease.

She was born prematurely and found to have a rare condition called Ebsteins Anomaly, in which a right heart valve sits lower than normal, causing the heart to not pump properly and blood to flow backward through the heart. The left side of the heart works harder, causing that side to enlarge and the heart to weaken. The condition affects only 1 of every 10,000 babies.

The weakening of the heart can cause pulmonary hypertension, which Tinslee developed soon after she was born. She also suffered severe respiratory distress, which is common in premature births. Her lungs were underdeveloped, resulting in more stress on her lungs and heart.

According to the hospital, she is in near-constant sedation. If she were to be brought out of sedation, the hospitals says, her heart would work too hard and stop beating. She is fed through a tube and has severe sepsis.

Tinslee has two to three dying events daily but is kept on a respirator due to ongoing litigation.

According to Tinslees physician, Dr. Jay Duncan, Ebsteins Anomaly can be treated in different ways based on the severity of the disease.

"In some instances, people live into adulthood before the diagnosis is even made, Duncan wrote in an email to The Dallas Morning News. In other cases, the abnormal valve can be repaired and the heart functions at near normal levels. In its most severe form, such as Tinslees, the right side of the heart is rendered non-functional.

Some patients with a more severe version of Ebsteins Anomaly, like the kind Tinslee has, may be candidates for palliative surgery to divert blood flow around the malfunctioning heart valve, Duncan said. But other heart and lung problems make such a procedure impossible for Tinslee, he said.

Any one of the conditions Tinslee has could be deadly, but in combination they are certainly fatal, the hospital said.

Tinslees problem is not singular, Duncan said. It is the combination of pulmonary hypertension, chronic lung disease, and a severe form of Ebsteins Anomaly that make further surgical intervention futile.

Tom Mayo, a medical ethicist who teaches at SMUs Dedman School of Law and UT Southwestern Medical Center, said that although keeping a patient like Tinslee alive may be possible, doing so isnt necessarily whats best.

Weve struggled for a generation with the technological imperative, Mayo said. Medical miracles through technology happen so often that its easy to lose sight of the limits of medical technology. And there are limits.

When there are conflicts between caregivers and patient families at Cook Childrens, an ethics committee meets to discuss the clinical, social and ethical issues involved, the hospital said.

Doctors, chaplains, patients or patient family members can request a consultation with the committee. In Tinslees case, the babys medical team first contacted the panel in September, after caregivers believed it was clear that they had intractable differences of opinion" with her mother, the hospital said.

Tinslee mother, Trinity Lewis, and the childs maternal grandparents attended the ethics committee meeting on Oct. 30. The panel concluded that it would be inappropriate to continue treating the baby and that she should be allowed to die naturally.

The committees authority is derived from the Texas Advance Directives Act, signed into law in 1999 by then-Gov. George W. Bush. It allows for 10 days after the committees decision before life support care can be removed.

Mayo said he was part of a drafting committee that helped write the legislation. Texas is one of few if not the only states with such a law, he said.

I walked out feeling as though we had an important statute that would improve patient care and would only be used as a last resort, he said. I have a pretty high level of confidence that thats how its being used.

The day before Cook Childrens was set to stop treatment, the familys attorney, Joe Nixon, began calling the hospital and asking to extend the timeline for ending life support. Around that time, Texas Right to Life, a group that opposes abortion, began to lobby on Tinslees behalf.

That day, the group encouraged supporters to flood the hospital with calls and emails in opposition to the Texas Advance Directives Act. At a news conference outside the hospital, state legislators also called for action, the Fort Worth Star-Telegram reported. That night, Tarrant County District Judge Alex Kim signed a restraining order against the hospital, preventing physicians from stopping care.

Since then, Texas Right to Life has advocated for the Lewis family and has been the only organization to provide images of the child to the media. In the videos and photos, Tinslee opens her eyes and appears to reach for toys, but she also grimaces and tries to remove the tubes keeping her alive.

The appearance of a patient can be deceiving and make it difficult emotionally and intellectually to wrap our minds around next treatment options, Mayo said.

Mayo said Texas Right to Life was part of the drafting process for the Texas Advance Directives Act and agreed to the laws language reluctantly.

Nixon, the Lewis family lawyer, and Cook Childrens have both said that theyve been looking for another hospital to treat the baby but that none have agreed.

In October, according to Cook Childrens, many hospitals looked over Lewis clinical data and agreed with doctors assessments that further care would only harm the child more. The hospital has said it continues to make reasonable efforts to find another hospital that would take the baby.

Cook Childrens has forwarded her case to over 20 hospitals, all of which have declined further care. They include Texas Childrens and Childrens Memorial Hermann Hospital in Houston, Dell Childrens in Austin, Childrens and Medical City in Dallas, Childrens Medical Center in Oklahoma City, Childrens Hospital of Atlanta, St. Louis Childrens, Childrens Hospital of Philadelphia, Johns Hopkins in Baltimore, Methodist Hospital and University Hospital in San Antonio, Boston Childrens, Childrens Hospital of Los Angeles, Arkansas Childrens, C.S. Mott Childrens in Ann Arbor, Mich., LeBonheur Childrens in Memphis, Rady Childrens in San Diego, and The Childrens Hospital of San Antonio.

Kimberlyn Schwartz, a spokeswoman for Texas Right to Life, told The Associated Press after the appeals court decision that the group will continue to search for another hospital willing to admit Tinslee.

This week, a judge ruled in favor of Cook Childrens, allowing it to take Tinslee off life support. The hospital had already agreed to wait seven days after the decision before removing life support.

But Tinslee will probably linger longer. Her family appealed the decision and filed for emergency relief Thursday, and the next day Gov. Greg Abbott and Texas Attorney General Ken Paxton filed an amicus brief in support of the family.

This case presents a life-or-death decision, Paxton said in a prepared statement. The right-to-life and the guarantee of due process are of the utmost importance not only to baby Tinslee and her family, but to all Texans. I will continue to fight for Tinslee, and my office will continue to use all necessary resources to ensure that she will not be deprived of her right to live.

Late Friday, the Second Court of Appeals granted an order to delay the end of treatment until the court could rule on the case. The court did not immediately schedule a hearing.

This gives us so much hope for Tinslee, Schwartz, the Texas Right to Life spokeswoman, told The Associated Press. This is a prayer answered.

The Associated Press contributed to this report.

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6 things to know about Tinslee Lewis, the Fort Worth infant on life support at Cook Children's - The Dallas Morning News