Tinslee Lewis is just the latest victim of politicians who believe the state has more interest than families in determining who should receive care.

Texas’ 10-day “Futile Care” rule has come under fire again as doctors have determined further treatment for 11-month-old baby Tinslee Lewis, who was born with Ebstein’s Anomaly, a congenital heart defect, is futile.

Tinslee has spent her entire life at Cook Children’s Hospital in Fort Worth, Texas. Her mother would like to bring her home. This would require Cook’s cooperation, a transfer to a long-term care facility, and eventually home health providers.

Instead of working toward this goal, in November, the ethics committee of Cook Children’s Hospital informed Tinslee’s family that doctors will discontinue the care they’d given her since birth. Tinslee’s family has pushed back, and the court battle has been ongoing ever since. The case is now at a standstill, with both parties filing motions they hope will bolster their positions.

Trinity Lewis Tells a Different Story Than the Media

After multiple news outlets shared the hospital’s view of Tinslee’s poor quality of life, her mother, Trinity Lewis, made public statements regarding her daughter’s medical condition. She highlighted the lack of evidence, found by independent cardiovascular surgeons, of the severe pulmonary hypertension Cook’s used as part of its basis for recommending withdrawal of care.

During the same press conference, her lawyer suggested unnecessary obstacles may be stifling efforts to transfer or obtain emergency permissions for an outside physician to perform a tracheostomy Lewis has been requesting for her daughter since July. Both Lewis and her lawyer spoke of Tinslee’s interaction with family, her emotional responses to a television cartoon she enjoyed, and their hopes of finding life-affirming medical professionals who will help Tinslee live the life she is meant to live, regardless of how long or short it may be.

This press conference showed an entirely different perspective than the media had portrayed. Previous news stories, based on court documents, had evoked an image of an infant girl suffering unmitigated pain. We were led to understand Tinslee was riddled with infection, suffering cardiac events multiple times a day, and unquestionably close to death. It was assumed Trinity Lewis’ hopes for her daughter were unrealistic.

Instead, we learn Lewis has been seeking reasonable alternative care for months, possesses an affidavit and independent review from medical professionals outside Cook’s who believe Tinslee may not be quite as medically compromised as has been reported. Tinslee is currently on only 30 percent oxygen (room air is 21 percent oxygen), and is at 70-80 percent saturation, which is typical for a person with cardiac issues.

Hannah Mehta, director of Protect TX Fragile Kids, a grassroots advocacy group that focuses on improving Texas’s policies and priorities for fragile children and assisting families in accessing proper medical care for their children, also spoke at the press conference, highlighting information mainstream media sources didn’t mention. This information primarily pertained to outdated medical records that outside facilities were using to determine whether they could care for Tinslee, which were not indicative of her current medical condition.

Just this week, physicians indicated to Lewis that a previous infection introduced by Tinslee’s ET tube had been resolved. Current records confirm any concerns of sepsis or septic shock have also been resolved.

Tinslee Isn’t the Only Patient Harmed by These Laws

While Tinslee lies waiting in a hospital room for her case to make its way through the Texas court system, her family’s struggle to find alternative care is evidence of the need for reform of this unforgiving legislation. Unlike some other cases we’ve seen, where families fight to retain treatment for children after brain or clinical death has been determined (still questionable in some cases), Tinslee is responsive to the presence of those she recognizes and is very much alive.

There is no indication she is suffering excessively. As with most medical treatments, some pain may be involved, which is why Lewis has requested the creation of a hospice or palliative care plan for her daughter. Lewis understands that, ultimately, Tinslee’s life may be shorter than she would hope for. But if Tinslee were to pass away, Lewis, like more and more Americans, would like her daughter to be at home, a place she has never known, where the rest of her family will be waiting to care tenderly for her.

The state of Texas has decided goals like this are too far-fetched, giving individual physicians virtually absolute power over end-of-life care not only for minor children, but also for adults. In many cases, such patients are alert and can communicate their desire to stay alive.

In at least one case, a patient had multiple alternative facilities offering to assume medical care, but ventilation was withdrawn before her family could secure proper Medicaid approval. Her family had to forcibly remove her from a hospital unwilling to treat her, in a daring middle-of-the-night ambulance escape.

Then there are cases such as Zach’s, in which a clerical error may have saved his life. He was determined to be a “futile case,” but because the ethics committee didn’t register documents properly, his parents had time to stop the clock before it started.

We Must Create Better Laws

Tinslee’s case is tragic not only because it involves an innocent child and a grieving mother, but because so many people either don’t realize the insidious nature of this law until it’s too late or don’t understand the scenarios in which this law is applied. In addition, pro-life groups such as Texas Right To Life and Texas Alliance for Life are at odds over the best solution.

Finding a balance between a family’s right to direct end-of-life care for fragile loved ones and a medical professional’s right to legally practice medicine within the confines of his moral codes has proven to be almost impossible while the law is in place. We must protect children like Tinslee from passive euthanasia, but also be cautious not to create laws compelling physicians to participate in morally questionable “treatments,” such as physician-assisted suicide and abortion. Unfortunately, more states are beginning to adopt statutes like the one in Texas.

In the end, the law as written may not allow enough leeway to save Tinslee. Currently, there is no ability to review the ethics committee decision once it’s finalized. The law only allows for appeals regarding the length of time a facility must continue care. The sole possibility for Lewis and her daughter is an alternate facility, which may be difficult to secure given the news media’s characterization of Tinslee’s condition — a characterization based on out-of-date records.

An anonymous source close to the situation has shared with me rumors that physicians view this dilemma and others like it as “right-to-die” cases, and hospitals may have unofficial, preexisting agreements to decline patients who have been given a 10-day letter.

If Lewis cannot find care outside Cook’s, Tinslee may spend her final days suffocating in her mother’s arms, with the machines needed to ensure survival sitting unused in the corner, within her mother’s view. Tinslee will be just the latest victim of politicians who believe the state has more interest than families in determining who should receive care and who shouldn’t, and she most likely won’t be the last.