Update: The deadline has been extended until Nov. 22.
FORT WORTH (CBSDFW.COM) — A North Texas mother is fighting for her baby’s life as Cook Children’s Hospital plans to remove her off life support.
Nine-month-old Tinslee Lewis has never seen the outside of a hospital, and her mother is afraid she will never have that opportunity.
Her mother, Trinity Lewis, said Tinslee was diagnosed with Ebstien Anomaly, a heart defect, which — in Tinslee’s case — caused her heart to be so enlarged that it pressed against her right lung, causing chronic lung disease. She has had three surgeries and has also been on a ventilator for roughly two months.
Texas has a “10 day law,” in which medical facilities can withdraw treatment unless the family can transfer the patient to another facility.
She said the hospital gave her paperwork last Thursday, and since then she has been trying to find a hospital that will take her daughter, but some are just now starting to get back to her.
Lewis said she is hoping for and extension so she has more time.
“I just don’t think that what they’re doing to my baby is [right], because she’s not brain dead. She’s there. And she has overcome so much I know she’ll be OK this time,” Lewis said.
She is now hoping to catch the ears of the ethics committee, doctors, or just anyone behind the final decision to extend the deadline.
Cook’s has since come out with a statement:
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 life-sustaining 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:
- Children’s Hospital of Philadelphia
- Johns Hopkins
- University Hospital San Antonio
- Texas Children’s
- Dallas Children’s
- Boston Children’s
- Children’s Hospital of Los Angeles
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.