Emilio Gonzales is terminally ill.
The 17-month-old boy has been diagnosed with Leighâ€™s disease â€“ a rare illness that is characterized by degeneration of the central nervous system.
Heâ€™s been in a pediatric intensive care unit since December 28. According to doctors his condition is irreversible. He canâ€™t breath on his own. Heâ€™s fed through a tube. He rarely opens his eyes. He does not have a gag reflex. He shows no real purposeful response or movement.
Without life support, Emilio would die.
Emilio is at the center of a growing controversy surrounding a 1999 Texas law that allows doctors and hospital administrators to decide when to end life-sustaining treatment in medically futile cases. If thereâ€™s no hope that a patient will recover, hospitals can give a 10-day notice to the family of their decision to discontinue care.
Even though the lawâ€™s been on the books for eight years, hospitals have rarely had to send notices because doctors and family members usually come to an agreement about when is the best time to end treatment.
However, Emilioâ€™s mother, Catarina, doesnâ€™t want life support removed without her consent. She says she understands the condition of her son and that one day sheâ€™ll have to say good-bye but wants to be the one to decide when her sonâ€™s life will end.
I feel for Catarina and the decision sheâ€™s facing. Taking a child off life support is the hardest, most difficult decision anyone can ever make.
Five years ago, my daughter, Hope, came into the world three months early. Though she wasnâ€™t suffering from a disease like Emilio, she was dependant on a ventilator for breath, tubes for food, made no purposeful movements, and had no higher order brain functions. Four days after intensive testing by doctors and specialists, I was informed that Hopeâ€™s condition was irreversible.
Since Hope was too young to speak for herself, I was the one who had to make that life and death decision for her.
Coming to the conclusion to remove my daughterâ€™s life support was utter hell.
On the outside Hope looked fine. She had ten fingers, ten toes. Her skin was a healthy pink color. Even though she was three months early, she had a thick mat of brown hair.
Inside, however, her body wasnâ€™t working. His lungs couldnâ€™t function. There was severe brain damage. Her nervous system was shot.
None of that mattered; not to me anyway. She was my daughter. And like any parent I was hoping for a miracle â€“ one that, as it turned out, would never arrive.
Many agonizing days and sleepless nights passed before I came to the conclusion that being dependant on machines for basic life functions such as breathing, isnâ€™t really a life. Lying in a hospital bed, unable to communicate with or even be aware of who was around you isnâ€™t living. There was no chance that Hope would recover. She could never come home with me. Her life, so long as she lived, would be in a sterile hospital room surrounded by life giving machines.
I didnâ€™t want my daughter to live like that.
Nine days after she arrived in this world, Hope was removed from life support and died in my arms.
I understand Catarinaâ€™s hesitancy to remove Emilio from life support. Theyâ€™re the actions of a parent still holding out for a miracle. Theyâ€™re the actions of a parent whoâ€™s not ready to say good-bye.
All life is precious but there comes a time when a life ceases to be worth continuing. Sadly, Emilio has reached that stage.
Catarina is right when she says the Texas law needs to be changed. Family members are the best ones to make the decision when or if to remove life support. No one â€“ not doctors, nurses, or state legislators â€“ should force their hand.
But sheâ€™s wrong to prolonging a life â€“ and, possibly, the suffering â€“ of her young son.
When another personâ€™s life hangs in the balance, a choice must be made between selfish compassion and loving compassion. The only endurable and principled choice is love.
Loving compassion is choosing â€˜rightâ€™ over â€˜want.â€™ It is the willingness to take upon oneâ€™s self the extreme burden of life-and-death decisions for the benefit of the miserable, and to be willing to absorb the personal cost of anguish and heartache that follows. It might be said, â€œThere is no greater love than a mother who lays down her heart for the sake of her child.â€
If I could impart any words of advice to Catarina it would be this: let your son go to a better place. Itâ€™s the most loving thing you can do for him.
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