Fight over baby’s life support divides ethicists - CNN.com

Emilio is 17 months old and has a rare genetic disorder that’s ravaging his central nervous system. He cannot see, speak, or eat. A ventilator breathes for him in the Pediatric Intensive Care Unit at Austin Children’s Hospital, where he’s been since December. Without the ventilator, Emilio would die within hours.

The hospital contends that keeping Emilio alive on a ventilator is painful for the toddler and useless against his illness — Leigh’s disease, a rare degenerative disorder that has no cure.

Under Texas law, Children’s has the right to withdraw life support if medical experts deem it medically inappropriate.

Emilio’s mother, Catarina Gonzales, on the other hand, is fighting to keep her son on the ventilator, allowing him to die “naturally, the way God intended.”

IMO, if she took him off the ventilator, Baby Emilio would be allowed to die “naturally, the way God intended”, instead of being kept alive by artificial means (ventilator). The mother insists he does respond to her and can see her, even though he is blind.

[Leigh's disease] is an inherited disorder which usually affects infants, but in rare cases, teenagers and adults, as well. In the case of the disease, mutations in mitochondrial DNA cause degradation of motor skills and eventually death….

….It is currently treated with Vitamin B1, or thiamin, but even with treatment, infants rarely live longer than two or three years after the onset of the disease. In cases of older people, the disease takes longer, but is still almost always fatal.

(Hat-tip to Wikipedia)

I’m no mother, and I’m not a medical expert, either; but personally, I cannot justify keeping a baby on a respirator in such a state.

The CNN piece continues…

The case, and the Texas law, have divided medical ethicists. Art Caplan, an ethicist at the University of Pennsylvania, supports the Texas law giving the hospital the right to make life or death decisions even if the family disagrees. “There are occasions when family members just don’t get it right,” he said. “No parent should have the right to cause suffering to a kid in a futile situation.”

But Dr. Lainie Ross, a pediatrician and medical ethicist at the University of Chicago, says she thinks Emilio’s mother, not the doctors, should be able to decide whether Emilio’s life is worth living. “Who am I to judge what’s a good quality of life?” she said. “If this were my kid, I’d have pulled the ventilator months ago, but this isn’t my kid.”

Who are you, Dr. Ross? A doctor, and a pediatrician at that! Isn’t it part of a doctor’s job to determine how someone’s quality of life is? Isn’t it a doctor’s job to determine the state of someone’s health? This may not be your child, but you are a doctor. Surely she’s had to make these sorts of assessments before?

Dr. Ross says that under the law, some dozen times hospitals have pulled the plug against the family’s wishes. She says more often than not, the law is used against poor families. “The law is going to be used more commonly against poor, vulnerable populations. If this family could pay for a nurse to take care of the boy at home, we wouldn’t be having this conversation,” she said.

And I would dare say the proverbial nurse’s efforts would be as futile as the doctors’ efforts. Barring a complete miracle, Baby Emilio’s condition would continue to deteriorate; and he would still die.

Toward the end…

But Gonzales says her son is on heavy doses of morphine and not in pain. She said her son does react to her. “I put my finger in his hand, and I’m talking to him, and he’ll squeeze it,” she says. “Then he’ll open his eyes and look at me.”

He may seem to be looking at her, but it doesn’t mean he can see her.

Gonzales said she’ll continue to fight for treatment for her son. “I love my kid so much, I have to fight for him,” she said. “That’s your job — you fight for your son or your daughter. You don’t let nobody push you around or make decisions for you.”

But sometimes you have to cave and realize that your fighting is an exercise in futility. It’s not going to work. Eventually, she’s going to lose her son. I just don’t think she’s ready to give him up and let nature take its course. The baby may be alive (artificially), but he’s not living. I say, let him meet his maker.