Last Updated Nov 3, 2015 4:43 PM EST
ATHENS, Ala. -- An Alabama teen with a terminal heart condition has not returned to school after a spate of hospitalizations because of what his mother says is a dispute with school officials about how he might die.
Alex Hoover's case presents something of a legal loophole: His mother, Rene, has drawn up legal documents known as an advance directive to ensure the 14-year-old is not revived if he goes into cardiac arrest. But officials say they can't follow that directive if his heart stops at school.
Rene Hoover says she does not want her son's last days spent enduring a battery of medical procedures and medication as a result of his condition, aortic mitral valve stenosis. The condition causes the heart's mitral valve to narrow and restrict blood flow.
"The last procedure we had done, it took us three weeks to get him to go to bed at night because he was afraid that if he went to sleep he would wake up and something would be wrong or that he'd be hurt," Hoover told The Associated Press. A successful resuscitation and subsequent surgeries are unlikely to significantly improve the teen's prognosis, she said.
"He would have to live his fears every single day," Hoover said.
Alex, of Athens, Alabama, was hospitalized three times over the summer and hasn't returned to class because Limestone County school board officials have said they won't recognize the advance directive. His heart valve is too weak to keep up with his growth spurt, and his health has declined over the past year, Rene Hoover said.
In Alabama, do-not-resuscitate orders and similar directives apply only to people 19 and older. Alabama State Department of Education spokeswoman Melissa Valdes-Hubert said the department has no policy on advance directives and school staff must decide whether to follow parents' orders. The school district's special education director, Tara Bachus, told WAFF-TV that staff would follow standard medical response procedures in an emergency.
"He instantly had to be revived when he was born," explained Rene Hoover to CBS affiliate WHNT in October. "Life has been a battle."
A teacher visits Alex, who has autism, at home with lessons three times a week, and Hoover said she doubts officials will accept her proposal to take Alex to school for four hours a week on her days off while she sits nearby in case of an emergency.
"It's not about you anymore," said a tearful Hoover over the decision to WHNT. "It's about their quality of life and you have to step in and do what you have to do, outside of what your comfort zone, is to protect them."
Calls and emails to school district officials from the AP were not returned.
Alan Meisel, director of the Center for Bioethics and Health Law at the University of Pittsburgh, questioned whether the teen had the capacity to issue an advance directive.
"The fact that the person in question is under 18 simply to me makes it that much clearer that they need not honor the advance directive in this situation," Meisel said.
Aside from liability concerns, school officials likely have concerns over the potential impact on students who could witness the teen's death, Meisel said.
However, Hoover said she simply wants her son to live as fully and normally as possible.
"We want him to have comfort and peace," Hoover said. "Emotionally, it is probably the hardest thing I think a human being could go through; knowing that you have to choose not if your child's gonna die, but how your child's gonna die."
Republican state Rep. Mac McCutcheon said he's considering introducing legislation next year to allow advance directives to cover minors after hearing about Hoover's case. McCutcheon said medical professionals could take a student with an advance directive to a private area in the event of a medical emergency to lessen the impact on other students and teachers.
"What we're trying to do is get the state into a position to recognize that there should be a law to help juveniles in these situations," he said.
Granting discretion in this area could put school officials, emergency responders and others in a difficult position, Meisel said.
"The nice thing about the 18-year-old age is it's a clear rule, you know when you honor it. You know when you can, or are indeed obligated, to ignore it," Meisel said.
McCutcheon said he's researching legal issues surrounding advance directives and hopes to present a proposal in 2016.