FORT WORTH, Texas (Tribune News Service) — It’s been about four months since an ethics committee at Cook Children’s Medical Center, in accordance with the Texas Advance Directives Act, determined that the ventilator sustaining little Tinslee Lewis, should be removed — and longer still since her team of doctors determined that her condition was intractable; that without extraordinary medical intervention, she would expire.
Yet Tinslee persists, her precious young life — still dependent on machines and a litany of medical professionals — now at the center of an epic legal battle in which none of the likely outcomes is good, and each of which forces us to reflect on what happens when systems are involved in making medical decisions.
As with several recent cases involving the efforts of parents fighting to keep alive a profoundly ill child, Tinslee’s young mother, Trinity Lewis, is a sympathetic character.
While a combination of devastating medical conditions has meant that every day of her daughter’s achingly short life has been spent inside a hospital room, Lewis has held out hope for Tinslee’s full recovery. What mother wouldn’t?
After all, medical miracles do occur.
Trenton McKinley recovered from a massive brain injury and literal death after his parents had given doctors permission to harvest his organs for donation.
An Emirati woman, Munira Abdulla, awoke in 2019 after a car accident left her in a “minimally conscious state” for 27 years.
And even in the absence of the miraculous, medical prognoses, even in the most desperate cases, can be wrong.
Jahi McMath survived for more than four years, under the diligent and loving care of her mother, after the state of California declared her brain dead and sought to terminate her life support in 2013.
British youngster Alfie Evans survived for five days after his breathing apparatus was forcibly removed, defying medical experts who predicted his swift demise.
But in Tinslee’s case, such a miracle, even a short-lived one, seems too much to hope for.
Her medical reality is too complex; even after several surgeries, her critical organs do not function as they should. She suffers from a heart defect and pulmonary hypertension. Her dire condition exacerbates other problems. She is in an almost constant state of induced sedation, her body enduring severe sepsis.
Whereas the family of little Alfie had a medical facility willing and waiting to accept him and offer him care, Tinslee has no such offer.
That is an unrelentingly tragic circumstance for any mother to have to face.
But now, politics has entered the scene. And judges, and courts. And that has to make Lewis’s own personal tragedy all the more acute.
Tinslee’s case has become the cause célèbre for Texas Right to Life, a group that occupies the far-right of the anti-abortion movement. They have rushed to Lewis’s aid, taking up her legal case in an effort to bring down a flawed but redeemable statute that should be modified — to favor the wishes of families — but not eliminated.
Perhaps the group’s intentions are pure, but one gets a sneaking sense they are exploiting a vulnerable mother in her darkest hour.
It’s reasonable to want Lewis to have agency over her daughter’s fate. And it should be the benefit of a free and just society that any decision about Tinslee’s future — even a foolish or wrong-headed one — should be made exclusively by her mother.
But it’s also reasonable to believe that ceasing medical interventions and allowing Tinslee to pass from this life into the next is a life-honoring action. Courageously accepting natural death, our own and of those we love, has its own profound dignity and blessing.
That might be the conclusion Lewis would come to on her own, if there weren’t so many people, so many parties, so many systems, trying to come to one for her.