The rights and ethical beliefs of the doctors and nurses who are treating Tinslee Lewis “should not be ignored,” writes Cook Children’s Hospital as the legal battle over the baby’s life continues in Texas courts.
A brief filed this week to the Second Court of Appeals details Cook Children’s exhaustive efforts to treat Tinslee, who was born with a rare congenital heart condition and has chronic lung disease.
She is kept alive on ventilators and doctors say the prolonged medical treatments are only causing the baby pain.
Legal documents say 11-month-old Tinslee experiences a “dying event” nearly every day if not more frequently. When this happens, medical staff must manually inflate the baby’s lungs to keep her alive.
Though Tinslee cannot survive on her own, she is not brain dead. She can feel each treatment she undergoes, the brief says.
To calm the baby and to keep her from crying from the pain of the medical interventions, she is kept “sedated and paralyzed.”
“She cannot move. She cannot cuddle. She is rarely, if ever, held,” the brief says. “The physician who has been treating her since birth has never seen her smile.”
Tinslee’s family has filed restraining orders to keep Cook Children’s from removing her from life support, triggering a legal battle that has landed in the Texas appellate court system. State politicians, including Gov. Greg Abbott, have publicly supported Tinslee’s right to live.
"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,” said Texas Attorney General Ken Paxton in a written statement earlier this month. “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."
But the hospital says it is not trying to end Tinslee’s life and believes in her right to life as well.
“But the tragic reality is that only her diseases, not Cook Children’s, threaten to deprive her of life,” lawyers for Cook Children’s write in the latest appellate brief.
Furthermore, the doctors and nurses who are treating Tinslee believe they are only causing the baby harm and that the continued interventions are “unethical” and “cruel.”
“Experienced pediatric nurses and doctors — who have dedicated their lives to treating the sickest children — are unable to reconcile with their ethical duties the excruciating but pointless pain they must cause [Tinslee] every single day,” the brief says.
'Moral distress'
The court filings detail the timeline of Tinslee’s treatment and illness but also shows how extending the baby's life is also hurting Cook Children's medical staff.
Trinity Lewis claims that her daughter enjoys having her nails painted and reacts to watching TV shows. The mother also says that her baby reacts to her.
"She acknowledges that we’re there. When you come into the room, you touch her, you talk to her, she knows that we’re there, yeah," Lewis said during a news conference earlier this month.
But in court documents, Cook Children's disputes Lewis’ claim that Tinslee can enjoy any activities. Instead, the hospital says, the child is constantly suffering.
“Her doctors and nurses must hurt her to provide the constant medical intervention that keeps her alive,” the brief says.
Changing the baby’s diaper hurts her. Moving her so that she doesn’t get bedsores is painful. Even the ventilator that forces air into her damaged lungs causes suffering.
The legal brief says the doctors and nurses are used to performing “painful treatments on children every day without shirking” but that is in cases where they know they are helping the pediatric patient improve.
In Tinslee’s case, “the medical staff inflicts pain that — it is undisputed — will not help her get better,” the document says.
Continuing to treat Tinslee is causing “moral distress” that particularly affects nurses, who are the primary caretakers.
There is at least one nurse with Tinslee at all times, and nurses work together to administer medications and provide respiratory treatments. Touching the baby can cause her vitals to crash, so multiple medical professionals gather around her to limit the length of time they move or medicate Tinslee.
Nurses are informed in advance that they will be assigned to care for Tinslee so that they have time to request a different assignment, the brief says. Many refuse because they “are uncomfortable in inflicting that kind of pain on her,” according to court documents.
'Every hospital refused'
Cook Children’s claims that early in Tinslee’s life, doctors and nurses believed she could one day leave the hospital. Several surgeries were performed between February and June, but Tinslee’s condition worsened in July.
The baby was put on a heart-lung bypass machine and a final surgery was performed to improve her blood flow in an attempt to increase her oxygen levels. But her condition did not improve, and medical staff started discussing with Trinity Lewis that her child would not survive, court documents show.
The brief filed this week says that “even after months of conversations” between the mother and the physicians, Lewis “persisted in believing that there must be some drug or surgery that would fix” Tinslee. The hospital claims that the mother stopped talking to the physicians and “began to avoid them.”
Cook Children’s contacted Boston Children’s Hospital and Texas Children’s hospital about transferring Tinslee, but “both hospitals refused,” the brief says.
That’s when the hospital’s ethics committee decided that Cook Children’s “could not ethically” continue to keep Tinslee on life-support. The baby’s mother was notified five days before a meeting on Oct. 30. She and her parents were invited to speak before the committee made a decision.
Tinslee's physicians continued to make "extraordinary efforts" to contact the top cardiac children's hospitals about the baby's care. More than 20 medical facilities were consulted about taking over Tinslee's care.
"Every hospital refused," the brief says.
The hospital notified the family that Tinslee would be removed from life support. Lewis filed a request for a temporary restraining order.
In November, attorney Joe Nixon said there were facilities willing to take Tinslee. Nixon is representing the Lewis family.
He argued during a December court hearing in Tarrant County that "criminals on death row get more rights than Tinslee does."
Nixon claimed state law allowing a hospital to remove care is unconstitutional.
The Texas Advance Directive Act gives a family 10 days to find another medical facility after a hospital's board has decided to remove care.
Cook Children’s Hospital has not requested to present oral arguments in the appellate court, saying that doing so would further delay the case and would cause “additional pain and suffering” for Tinslee.
Full brief of appellee:
Cook Children's timeline on Tinslee Lewis' medical care:
