The following information is available to you on the web, mostly from a two page clinical summary that Ms Gonzales' attorney released to the media and blogs (a huge transgression in terms of confidentiality), but also from interviews of physicians and other spokespersons.  There is an obvious incongruity between the mother's story about how Emilio responds to her, grasps her hand, turns his head to her voice, opens his eyes and looks at her, compared with the history that the child has been blind and deaf since birth, prior to the more precipitous degeneration of almost all his cortical structures and brainstem function over the last few months. He is 99.5 % brain dead, has exhibited no higher brain function since late January, and has had absent cough, gag, corneals, dolls eye reflexes since late Jan 2007. Abbreviated apnea tests show no respiratory effort for two minutes. His only response to pain is a faint grimace and slight truncal arching. He has neurogenic bladder requiring catheterizations, and requires considerable invasive efforts to treat severe constipation.
His lungs have shown a tendency to collapse repeatedly, even with a cuffed endotracheal tube in place and management in a critical care setting, making tracheostomy and a chronic respiratory/nursing home environment very problematic.  The respiratory therapy maneuvers required to manage his pulmonary issues are quite vigorous and invasive. This mother and family are incapable of caring for him in a home ventilation environment, even if it were medically possible. Yes, the baby could be subjected to a tracheostomy and G-tube, knowing that these procedures would cause suffering and lead to a more rapid and sudden demise due to worsening respiratory complications.

The emotional and psychological toll on the hospital staff must be huge. People who willingly take care of critically ill children are special individuals, and in my experience, do their utmost to save every child that they possibly can, pulling out all the stops. In a way, they are now being forced into the role of the abuser, parsing their feelings about the interventions and procedures they are forced to employ (in the setting of hopelessness, and prolongation of death) with their more natural and chosen roles as caregiver/advocate.

It should be apparent that Emilio is no Schiavo or Christopher Reeve. Schiavo's case involved a patient who did not have a terminal disease, had modest care requirements, and had a true, but severe disability. She was fed with a feeding tube. The Schiavo case = euthanasia to me. Emilio is dying from a rapidly evolving, fatal disease without any treatment possibilities, even experimental. Emilio's brain has been destroyed. He is a beating-heart preparation. Saying he is "disabled" is like saying a 767 airliner full of fuel crashing into a mountain is a "malfunction." The careproviders are being forced to witness the painful, inexorable march of the natural history of this fatal incurable disease.
The cases of individuals such as Christopher Reeve are not relevant to this case at all- the need for mechanical ventilaton due to spinal cord disease or a primary muscle disease is entirely different from requiring a respirator because of lack of cortical and brainstem function. Mr. Reeve was never asked to give up his ventilator because he was neurologically impaired- he had completely normal and full cognitive function and was making his own choices.

People need to stop referring to 6+ years of life expectancy for Emilio- babies with genetic neurodegenerative diseases that present fulminantly in infancy die much earlier in life. Emilio's disease trajectory has been rapidly progressive and destructive. (see http://www.wesleyjsmith.com/blog/2007/04/baby-emilio-hearing-postponed.html). Dr Doody's perseveration about word definitions (dead vs dying) is truly pathetic. If you were out walking and a three ton meteor struck you, it would make no sense to argue whether the outcome could have been different if the meteor were iron core vs a ball of ice. Emilio's diseae is like that meteor. Dr Doody has taken it upon himself to redefine the Catholic Church's position of end of life care.

For those interested in the truth vs fabrications, there are several sources of information on the church's position, expanding on the brief description in the Cathechism.
See the National Catholic Bioethics Center at http://www.ncbcenter.org. and The Center for Bioethics & Human Dignity (a Christian bioethicis site) at http://www.cbhd.org/. See   http://www.ewtn.com/expert/answers/end_of_life_decisions.htm also.

A breathing tube and respirator employed to maintaini a heartbeat in a terminally ill baby with an irreversible, untreatable disease is the kind of extraordinary care and disproportionate application of medical intervention that is not supported by the Catholic tradition. Feeding, hydration, and pain/syptom relief are being continued. These are ordinary and proportionate interventions. Removing the breathing tube in this instance to allow a peaceful death would not constitute euthanasia. Continuing intensive care support until the heart rate control mechanisms unravel and the heart stops constitutes prolonging death.
 
The Texas futility statute requires the hospital to assist the family in finding physician(s) and an institution willing to care for the patient after an ethics committee has determined the care of the patient to be futile.  The statute requires ten days for this process, but the actual timeline actually allows about 16-17 days for the purpose of locating alternative care. If you had looked at information available on the web, you would have seen that the physicians caring for Emilio obtained three separate "second opinions" from other prominent Children's Hospitals regarding his diagnosis, treatment, and prognosis prior to the first Ethics Committee meeting. All concurred with the medical decision making and agreed that care was futile. The hospital started the process of trying to locate a willing receiving institution in mid February and contacted ≥ 30 different Children's Hospitals, all declining to accept Emilio on medical grounds. The futility statute has been rarely utilized in cases involving infants and children in Texas- I know of only 2-3.
 
Harsh comments about funding status and the medical/ethical stance of the hospital have been cruel, uninformed, and misguided. Ironically, the financial burden to the hospital would be relieved by preparing the baby for chronic care and then sending him home to his inevitable and rapid demise. But, their decisions are obviously not driven by financial considerations.  Children's Hospital of Austin is part of a not-for-profit Catholic health care network, whose guiding principles came from the Daughters of Charity order, which began in France in the 1600's with the first organized hospitals in existence. They take care of all patients, regardless of their ability to pay.
In response to questions by local media regarding the actual cost of providing care to Emilio since late Dec 2006, the estimate was > $1.5 million. Over half of the patients in most pediatric ICU's have no insurance coverage. Children's Hospital of Austin coordinates and participates in medical missions to third world countries to provide care, including basic medical care as well as surgical procedures. A foundation was set up to bring in patients from all over the world to correct congenital heart defects in patients who would otherwise die in infancy and early childhood.
 
The current environment of consumerism, egocentrism, and focus on personal rights vs personal/parental duty and responsibility has led to the trumping of the integrity and moral/ethical foundations of medicine by the autonomy of the patient/family. I need no lecture about the moral/ethical problems of the paternalistic era of health care.  I trained during those times and witnessed decisions allowing patients with trisomy 21/duodenal atresia, and myelomeningocele to die. I saw many children with chromosomal defects die of Eisenmenger's syndrome following decisions to withhold corrective heart surgery. If parental autonomy always prevailed, we would be in trouble. A number of times I have experienced the situation in which a parent has asked/demanded that care be withdrawn when no physician or consultant involved in the case felt that this was appropriate.
It might interest you to know that the largest (by far) right-to-life coalition in Texas actually supports the Texas futility statute and was at the table when the law was written and passed. The smaller, more radical, vocal, and extreme groups in Texas seem interested in driving patient autonomy to the point that even euthanasia could be demanded of the medical profession. Moderate right-to-life advocates are so concerned about this that they have allied with the state's hospital and physician organizations in support of the Texas futility statute.   

A well established ethical principle supports the medical profession in declining to provide treatments that are not beneficial or therapeutic. Stating that the parent's choice should always outweigh the physicians' medical/ethical/moral stance is a quite dangerous position- indeed, one that you should recognize as representing another treacherous slippery slope that society should approach very carefully. There is considerable concern by ethicists and the medical community that the pendulum has swung too far toward patient autonomy. There are numerous "physician conscience" laws on the books now across the US that are intended to defend the integrity and moral stance of care providers.
See "Health Care Providers' Right of Conscience" at http://www.cbhd.org/resources/healthcare/collett_2004-04-27.htm
Only if yours is an extreme right-to-life position (keep the heart beating at all costs) could you fail to see the danger of unchecked patient autonomy.
Did you know that in mid February the mother had picked out Emilio's burial clothes and funds were obtained by the family for a Catholic burial?  Then somehow the extreme right-to-life groups got involved, and Emilio became the pawn of the political agendas of these groups. This sequence of events is so unfortunate- where is your moral/ethical justification for such a cruel objectification and politicization of a human life?
 
The cost of medical care in the US is ~ 16 % of the GNP, with a huge fraction of that cost being devoted to true end-of-life care. There is broad consensus that end of life pain and symptom relief are suboptimal and that hospice care options are underutilized.  This is where economics does come into play on a societal level. How many patients like Emilio are there? Say there are 100 in Texas alone in a year's time. 100 X 1.5 million = 150 million dollars. What could society do with extra funds of that magnitude to improve health care access?
 
It is dangerous to make uninformed statements about such a volatile and sensitive issue, especially one in which the family and her lawyers are out parading their version of the story with its gross inaccuracies in the media, while the hospital and medical profession has remained circumspect and responsibly restrained out of concern for family confidentiality and privacy and staff privacy and safety.

A Catholic physician

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