End of life on the internet

LifeNews and Channel 8 TV in Austin, as well as several bloggers are reporting on the denial of the temporary restraining order for Emilio Gonzales in Austin, Texas.

Unfortunately, there are quite a few errors in the story.

I'm disturbed that the false information is spread and that there seems to be no problem in accusing the doctors of wanting to cause Emilio to die. In fact, the disease is causing Emilio to die, and his mother has said as much. The nurses and doctors have fought to prevent Emilio from having a "natural" death.

The doctors have worked with Emilio's mother, and have kept him alive in spite of repeat episodes where the baby's lungs developed a leak - or a "pneumothorax" - caused by the very high ventilator pressures required to keep Emilio's oxygen levels up.

Somehow, the North Country Gazette obtained the Ethics Committee Report and they have posted it on the Internet. I have copied part of the report at this post.

A pneumothorax allows air to escape into the chest around the lung, the pressure outside the lung grows each time the ventilator pushes air into the lungs. The lungs will collapse unless a chest tube is placed, the air is sucked out of the chest, and the lung reinflates. The ventilator pressures, high concentrations of oxygen and the collapsing of the lungs each cause further damage to the lungs.

The same high pressures explain why the doctors did not put in a tracheotomy earlier. The "trach" would have leaked if placed while the lungs needed such a high pressure.

There's no question of the diagnosis and the vitamin IV was not one of the "life sustaining treatments" and probably was not needed at all.

There's no doubt that the child has Leigh's syndrome. The syndrome is diagnosed by a group of symptoms, findings on the exam and sometimes by labs. In Emilio's case, there are also MRI's that show areas of the brain are dead and there are EEG's that show he has seizures one third to one half of the time. There are some tests for finding whether and how many or how severely the cells are affected with a genetic defect that makes the mitochondria - the energy factories of the cells - damaged. In the worst form, the type that causes "necrosis," or cell death, of the brain cells, children die very early. An alternate name is "necrotizing encephalomyopathy," meaning that the nerve and muscle cells are affected.

What is not known is the exact nature of the genetic defect that is causing the child's cells to die. There are at least several dozen and from my reading, I'll bet there are a hundred or so genetic defects that can be inherited or may be a new mutation. Some are "X-linked," meaning they are passed through the mother. Some - especially the X-linked forms - disturb the metabolism of the pyruvate dehydrogenase enzyme within the mitochondria.

In the past, some children with the form of the syndrome that changed the metabolism of pyruvate dehydrogenase got better after given high doses of IV thiamine. Now we know that that only works for certain types of defects that cause the syndrome. Other people get better with Co-Q 10 or some other diet change. (The article that the lawyers used to "prove" that the doctors were denying needed therapy was from 1974. There is much more known about the Sydrome than was known then - for one thing, more is known about DNA and certain mutations. However, these types are usually much more slow in developing and it's much more likely that the docs have been able to order tests for this specific defect - the DNA is evaluated.

While the hospital ethics committee did vote behind closed doors, they heard the testimony of in a hearing that included the lawyers, Emilio's mother and at least one employee of Texas Right to Life. No one is disputing the facts of the report.

Doctors understandably can debate and discuss medicine in a closed conversation, without lawyers and non-medical family members present. How else could they freely discuss the case, without fear of more lawsuits and/or while using the exact medical terminology that doesn't always mean the same thing to lay people that it does to doctors?

The difference is between those who want to keep Emilio alive no matter what pain he is caused by his treatments, no matter how many times his body must be invaded by tubes and needles while his brain tissue - and probably his muscles and intestinal lining as well - dies as the ventilator forces air into his stiffened lungs.

How many needles will Emilio have before his mother changes her mind and lets him go in peace? How many times will he be snatched back from the edge of death by the doctors before he is allowed to live - even a short time - without the pain and irritation of chest tubes, ventilators that push air into him, etc.?

There's no mention of removing the food and water because Emilio's brain does not cause him to breathe without the ventilator. If the ventilator is removed before the damaged areas of the brain heal -- a very unlikely scenario in children without Leigh's disease -- Emilio will die within minutes. The disease will kill him, not the doctors. Removing the ventilator will allow - not cause - him to die.

One of the lawyers has been posting about Emilio at Wesley Smith's blog since mid February.

And yet, neither of the lawyers mind saying things like,

People who could profit from an innocent person’s death should not get to decide when it occurs. Whatever the hospital’s motives are for pushing to end Emilio’s treatment, a child's life outweighs all other concerns--whether it’s to cut costs, or for convenience, or something else,” said Carden. “And furthermore, the twisted state law that allows hospitals to exterminate disabled children over their parents’ wishes needs to be changed.”

There is no profit for the doctors - the child has Medicaid and Medicare, according to what the lawyers and Texas Right to Life staffers have told me.

It is wrong to falsely accuse. It will not help Emilio. I sincerely doubt that it will help Emilio's mother get ready to let him go. And many people are being made angry and sad about the doctor's, hospital employees, nurses and even the Bishop of the Diocese of Austin's "murder" of Emilio. (The post at ProLife Blogs that had that last has been "snipped" to remove it, but the note of protest about accusing the bishop is still there. The quotes from Melanie Childers are still online at the North Country Gazette.)