Rene Hoover, whose son Alex suffers from a terminal heart condition, refuses to allow her son to return to school in fear that school officials will not allow him to die naturally. She’s now locked in a battle with the school over how to proceed and best care for her son.
Fourteen-year-old Alex Hoover is autistic and suffers from aortic mitral valve stenosis, which occurs when the aortic valve narrows and restricts blood flow. Hoover has endured years of hospitalizations, four catheterization procedures, and continues to receive hospice care twice a week for his condition. Alex’s mother told the Decatur Daily that she does not want to put her son through another procedure. Although doctors may be able to help prolong Alex’s life if he were to go into cardiac arrest and be revived, his mother believes that his quality of life would be greatly diminished.
Rene explained:
That would be the rest of his life, surgeries and treatments. 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.
Alex’s autism has hindered his ability to speak, and because of that his mother obtained an advance directive to guarantee that medical professionals “do not resuscitate” if Alex were to go into cardiac arrest.
But the problem is that Limestone County school board officials have refused to honor the advance directive. Do not resuscitate orders only apply to individuals 19 or older in the state of Alabama. With the lack of a state of federal policy on how schools should handle a situation like the Hoover’s, the school administration has decided to follow standard medical procedure. Rene Hoover requested that she attend classes with Alex for a few hours each week to ensure that she can make medical decisions for him, but the school declined based on a policy about how much time parents can spend on campus. Rene said in response:
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.
From a policy standpoint, the school administration is put in a tough position here. However, the administration could be doing more to protect Alex and his mother’s wishes for him as members of the school community. Obviously the nature of Alex’s situation is unique and devastating, and there is no question that he deserves to spend the remainder of his life happy with his friends in school. The school has an opportunity here to set the standard for how schools around the country respond to the unique needs of students (and their families) with illnesses.