Disability rights groups have joined with baby Tinslee Lewis in a battle against Texas’s controversial 10-day rule. Last year, staff at Cook Children’s Medical Center enacted the 10-day rule for Tinslee against her parents’ wishes, which would allow the hospital to remove her life-sustaining treatment. If the hospital’s request had been granted, Lewis’s family would have had just 10 days to find a new hospital to treat her before life support was removed.
Trinity Lewis, Tinslee’s mother, has been fighting for her daughter’s life for nearly a year. Though Tinslee is not brain-dead, hospital staff seemingly feel that Tinslee’s life is no longer valuable. Tinslee was born premature and was diagnosed with a rare heart defect called Ebstein’s anomaly, which causes her heart to press against her lungs. She has had to undergo multiple heart surgeries since July of 2019, and needs a ventilator to breathe. In a previous legal brief, the hospital argued that her quality of life is so poor, that she should be allowed to die.
“She cannot move. She cannot cuddle. She is rarely, if ever, held,” the brief said. “The physician who has been treating her since birth has never seen her smile.” The brief also claims the treatment Tinslee receives is painful for her, will not improve her condition, and is therefore not fair for the staff. Yet despite insistence that Tinslee cannot move, videos from her mother prove otherwise.
Dr. Glenn E. Green stepped forward this summer to dispute these claims as well, saying he could successfully treat her if given the opportunity. Green, a professor of otolaryngology at the University of Michigan, along with Dr. Patrick Roughneen, a physician practicing in Galveston, Texas, believe that a simple tracheostomy would address many of Tinslee’s problems, and that there was no evidence of pulmonary hypertension. “Tracheotomies are routinely performed for patients after 14-days on a ventilator. Baby T.L. has been on a ventilator for over 10 months,” Roughneen said. “It is not within the standard realm of care to leave a patient on a ventilator this long and refuse a tracheostomy. The benefits of a tracheostomy versus a ventilator are decreased work of breathing, reduction in airway dead space, avoidance of tracheo-innominate fistula [a lethal complication of an indwelling tracheostomy tube] and management of pulmonary secretions. Hence there are very specific patient benefits to performing this procedure.”
The Second Court of Appeals ruled in favor of the Lewis family in July, not only mandating that Tinslee be kept on life support, but giving Lewis the opportunity to challenge the state’s 10-day rule. Currently, the hospital has an injunction preventing them from withdrawing life support until after the trial is held before the Texas Supreme Court, where the 10-day rule would either be upheld, or ruled as unconstitutional.
Multiple disability groups have now come forward with a friend of the court brief. Groups signing the brief include several Catholic bishops in Texas, Protect TX Fragile Kids, ADAPT, ADAPT of Texas, Not Dead Yet, the Healthcare Advocacy and Leadership Organization (HALO), the Terri Schiavo Life and Hope Network, the Autistic Self Advocacy Network, and more. “The amici believe the Ten Day Rule is unconstitutional, and that it is unlawful to unilaterally remove baby T.L.’s life-sustaining medical treatment over Mother’s objection. Although she is a somewhat fragile child, T.L. is cognizant, interacts with her family and some caretakers, and enjoys life,” the brief reads. “T.L.’s life has inestimable value despite her medical challenges, and the joy and love T.L. shares with her family are worth protecting.”
The brief likewise points out that, under the 10-day rule, “There is no standard of proof, no meaningful right for the patient to be heard, no right to call witnesses, no record, and no neutral arbiter to decide the patient’s fate.”
Tinslee’s doctor at Cook Children’s Medical Center said last year that she wasn’t likely to live another six months. Yet Tinslee is still alive, and is nearing her second birthday. Tinslee is not brain-dead or dying, she is disabled. People with disabilities are routinely judged to have low quality of life, as the disability rights groups argued in the brief, which then leads to a withdrawal of their medical protections. Yet all people’s lives have worth and value, and no one should be at risk of death due to the ableism of those in power.
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