Mom battles school over how terminally ill son might die

The mother of an Alabama teen with a terminal heart condition will not allow her son to return to school for fear that school officials will not comply with his wish to die naturally.

Fourteen-year-old Alex Hoover of Athens, Ala., is autistic and receives hospice care twice a week for a heart condition, The Decatur Daily reported.

Alex has aortic mitral valve stenosis, which occurs when the aortic valve narrows and restricts blood flow, according to Mayo Clinic. After years of hospitalizations and four heart catheterization procedures, Alex's mother, Rene Hoover, told the Decatur Daily she does not want to put her son through another procedure.

Alex's heart is too weak to keep up with his growth, and while doctors may be able to prolong Alex's life if he goes into cardiac arrest, his mother believes his quality of life would be greatly diminished, AP reported. 

“That would be the rest of his life, surgeries and treatments,” she told The Decatur Daily. “As a kid with autism, it is very hard on him mentally and physically because he doesn’t understand. Just typical doctors' appointments are extremely hard on him. For my son, I choose quality, peace and happiness over that.”

Because Alex has autism and cannot speak, Rene obtained an advance directive to guarantee that medical professionals “do not resuscitate,” if her son goes into cardiac arrest. The only problem is that Limestone County school board officials have refused to honor the advance directive, WHNT-TV reported. 

“They won’t follow this advanced directive,” Hoover told WHNT-TV. “So it put me in a position where I’m having to fight for my son's rights, which I think is human rights, that we have made this decision for him.”

Do not resuscitate orders only apply to those 19 and older in the state of Alabama, AP reported. In the absence of a state or federal policy on how schools should handle advance directives, the school administration has decided to follow standard medical procedure, Tara Bachus, director of special education for Limestone County Schools, told WAFF-TV. 

Bachus told WAFF-TV the school would make every attempt to save Alex’s life in the event of a cardiac arrest at school.

Hoover told the news station that she wanted to attend classes with Alex for a few hours each week to ensure she can make medical decisions for him, but the school declined based on policy about how much time parents can spend on campus.

"He misses school. He misses his teachers. He misses his friends," Hoover told WAFF-TV.

With few options, Hoover has turned to state lawmakers for help. After hearing about Alex’s case, Rep. Mac McCutcheon said he may propose a law in 2016 that would allow advance directives to cover minors, AP reported.

"My child has a right to be there just like any other child in that school … For him to not be able to go to school and finish out the last days that he has, it breaks my heart," Hoover told WAFF-TV.

Follow @MaryBowerman on Twitter.