The mother of the 13-year-old California girl who was declared brain dead after suffering complications during a tonsillectomy says her daughter is "still asleep" in her first interview since relocating her daughter more than 10 weeks ago from the Oakland hospital where the surgery was performed.
"I do not use the word 'brain-death' towards my daughter," said Jahi McMath's mother, Nailah Winkfield, while in Philadelphia for the Terri Schiavo Life & Hope Award Gala Thursday.
McMath underwent surgery to remove her tonsils, uvula and adenoids to help her sleep apnea on Dec. 9 at the Children's Hospital and Research Center Oakland. Following the operation, she suffered massive bleeding and a heart attack.
Doctors at the Children's Hospital Oakland declared her brain dead on Dec. 12, 2013 -- at which point they could no longer treat McMath due to California state law.
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But the teen's family appealed the law, saying she still showed signs of life.
After a nearly month-long battle, McMath was relocated to an undisclosed long-term care facility on Jan. 5.
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"I've learned that if you really want something and you really believe in something, you fight for it," Winkfield said. "One of the main things you fight for is your children."
The battle for the teen led the Terri Schiavo Life & Hope Network to honor McMath's mother and stepfather, Marvin Winkfield, with their second annual Terri Schiavo Life & Hope Award at the Union League in Philadelphia Thursday.
"Jahi’s family persevered through extreme pressure from doctors, media and public opinion to enable their child a chance to be properly cared for,” Terri Schiavo's brother, Bobby Schindler said. "More and more these medical decisions are being put in the hands of hospitals and physicians rather than the way that it used to be where the family was the one making these types of decisions."
"We believe in the protection of and the value of life," said Schindler, who considers this a medical rights issue for the disabled. "Just because ... they can't do what an able-bodied person can do, we don't feel like there is any reason to treat that person any differently than a person who doesn't have to deal with those types of injuries."
McMath, who is unable to communicate, moves her arms and legs, turns her head from side-to-side and repositions herself in bed -- even sitting cross-legged, Winkfield said.
"Her movement is a big deal to me," she said. "If somebody was totally, 100 percent brain dead, I don't think they'd be able to move as much as my daughter does."
But the Children's Hospital Oakland stand by its doctors' assessment.
"The loss of a child is a tragic situation, regardless of when or how. Our hearts go out to the family and we wish them peace as they grieve the loss of their child," the hospital statement reads.
Winkfield, however, dismissed the remarks.
"I'm definitely not grieving a loss because I kiss her everyday, tell her I love her everyday," she said. "[The hospital] did everything they could to dehumanize my daughter so that people can really envision a corpse on a ventilator."
Winkfield appreciates the facility currently caring for her daughter, saying they refer to her by name and treat her like any other teenager.
McMath's mother also takes steps to create a sense of normalcy for her daughter.
"I give her a manicure and pedicure every Friday," she said. "It's mandatory because that's what we did when we were at home."
Her daughter also has her hair braided and listens to music, like Rihanna and Beyonce, on her iPod regularly, Winkfield said.
"She is blossoming into a teenager before my eyes," said Winkfield, who plans to remain by her daughter's side for as long as it takes.
"I can do it as long as her heart is beating and as long as my heart is beating."
You can watch the full interview with Nailah Winkfield and Bobby Schindler on NBC10 @Issue March 30 at 11:30 a.m.
Contact Alison Burdo at 610.668.5635, alison.burdo@nbcuni.com or follow @NewsBurd on Twitter.
