A mother fighting for the life of her 9-month old baby has been given more time to do what some people have called impossible.
Tinslee Lewis was born with congenital heart issues and was to be taken off life support Sunday at Cook Children's Medical Center in Fort Worth, until a judge granted a temporary restraining order that stopped it from happening.
Trinity Lewis said she knew her daughter would be born with congenital heart problems and the road ahead would be hard. But she said she's prepared to fight for more moments together.
She came close to that no longer being possible. Tinslee was supposed to be taken off life support Sunday -- specifically, a ventilator and a feeding tube.
A state law known as the "10-day rule" allows hospitals to end life support if another facility cannot be found to accept the patient, or if a court injunction isn't obtained.
"Now, when I hear stuff like that I just pray whenever I hear something. I don't even take it as if I'm believing what they're saying because God has the last say so," Trinity Lewis said.
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On Sunday a judge granted a temporary restraining order, giving Tinslee 11 more days. Trinity Lewis, along with activists, are working tirelessly to find a facility that will take her.
"Making the decision to move into hospice care, to pull an ET tube and take a child off of it should always be the family's decision," said Hannah Mehta with Protect Texas Fragile Kids.
Time is of the essence. In the meantime, Trinity Lewis dreams of a future for her daughter. And she said she draws from the strength of her little fighter.
"She's going to continue to put up a fight with the doctors and nurses."
Cook Children's released the following statement. You can also read it in its entirety here.
"Tinslee Lewis is a beautiful baby who has captured the hearts of many at Cook Children’s since her premature birth nine months ago. She was born with a rare heart defect called an Ebstein’s anomaly and has undergone several complex surgeries at Cook Children’s in an effort to improve her heart function. Further complicating matters, she also suffers from chronic lung disease and severe chronic pulmonary hypertension. Due to these complications, she has spent her entire life hospitalized in Cook Children’s intensive care unit. She has required artificial respiratory support throughout that time, and has been consistently on a ventilator since July.
In the last several months, it’s become apparent her health will never improve. Despite our best efforts, her condition is irreversible, meaning it will never be cured or eliminated. Without lifesustaining treatment, her condition is fatal. But more importantly, her physicians believe she is suffering.
To maintain the delicate balance necessary to sustain Tinslee’s life, and to prevent her from pulling out the lines that are connected to the ventilator, doctors have had to keep her constantly paralyzed and sedated. While Tinslee may sometimes appear alert and moving, her movements are the result of being weaned off of the paralyzing drugs. We believe Tinslee is reacting in pain when she’s not sedated and paralyzed.
Cook Children’s has made heroic efforts to treat Tinslee’s condition, all while being very transparent with her family regarding her poor prognosis. Despite those extraordinary efforts, Tinslee’s condition has not improved.
At the request of Tinslee’s family, we have reached out to nearly 20 facilities across the country to see if any would be willing to accept Tinslee as a patient. Some of the facilities include:
- Texas Children’s
- Children’s Memorial Hermann Hospital
- Dell Children’s
- Dallas Children’s
- Medical City Dallas
- Children’s Medical Center Oklahoma City
- Children’s Hospital of Atlanta
- St. Louis Children’sChildren’s Hospital of Philadelphia
- Johns Hopkins
- Methodist Hospital San Antonio
- University Hospital San Antonio
- Boston Children’s
- Children’s Hospital of Los Angeles
- Arkansas Children’s
- C.S. Mott Children’s Michigan
- LeBonheur Children’s Memphis
- Rady Children’s
- Children’s Hospital San Antonio CHRISTUS
All have said our assessment is correct and they feel there is nothing more they can provide to help improve this precious child’s life. A team of Cook Children’s doctors, nurses and staff have given their all to help Tinslee. While we believe every child’s life is sacred, we also believe that no child should be sentenced to a life of pain. Removing this beautiful child from mechanical ventilation is a gut-wrenching decision for Cook Children’s physicians and staff, however we feel it is in her best interest to free her from artificial, medical intervention and suffering.
-Winifred King Assistant Vice President of Public Relations Cook Children’s Health Care System
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