I understand everyone's concern regarding the "money issues" and "quality of life issues". Unfortunately, it should not be about money. This baby is 17 months old. Emilio's mother and family are not emotionally ready to let him go. They have not accepted what doctors say his fate is. It is unfair that this family has to live by the decision of the hospital and legislators who support a ridiculous law. The decision makers for Emilio will go about their lives as if nothing happened once Emilio's "plug is pulled" because the 'decision makers' are not personally affected. They are not at his bedside daily for extended periods of time. They do not love him as his family does. The decision makers are only concerned that they have the law on their side.
For people who have no personal attachment or familial relationship with the victim of a serious illness, it is so easy to say "he has no quality of life...just let him go." I personally experienced this when my brother in-law was severely ill and people from all over the hospital would talk about him in the elevators--by name, saying how cruel the family was not to let him die [HIPPA at work President George Bush!!!!!]. What none of them knew was my brother-in-law did not want to die and he was not allowed to make health care decisions for himself because his doctors did not talk to him even though he was fully alert! The doctors just badgered my sister to "let him go" right in front of him!!!! So, if you think doctors are people who are looking out for the best interest of their patients, you better think again. Doctors do not like to deal with failure and the inability to heal their patients and they don't like to be reminded that they don't know everything! Please don't think this statement is based solely on my negative personal experience mentioned above because it is not. It is based on 25 years of bedside care of patients and watching doctors dehumanize patients by referring to them by their illness and not their name. Talking about them as if they are not in the room and throwing in the towel when the doctor runs out of ideas for treatment based on their limited knowledge and unwillingness to seek help from other facilities that are willing to try other treatments. I have seen patients defy all odds of survival and wake up from comas, have tumors shrink, struggle through physical, occupational, and other forms of therapy to leave the hospital and go on with their lives. Emilio is a very young child, his physical resources are somewhat limited because he is a child, but if given the opportunity to fight to survive, he just might surprise everyone. After all, it is only believed that he has a terminal illness--according to the news reports. Why be in such a hurry to end Emilio's young life???

Back to the "Decision makers." Are these people even considering the horrible death this poor young child will endure? Think about it. Once life support is removed, he will be unable to breath; he will try to but be unable to [breathing is controlled in the brainstem-it is not a "higher brain function"]. The copious secretions that accumulate in his lungs and need to be suctioned out regularly--according to news reports--will not be removed because what little air the child could take in will be sucked out with the secretions. He will suffocate in his own lung fluids and mucus. Emilio's mother and family will have to witness this horrible scenario standing at his bedside during his last moments of life. To me, as a healthcare worker, this is a hideous and cruel horror that Emilio's family will have to endure on top of the heart wrenching experiences they've already endured since this baby became ill. And most certainly, this would be a mockery of the Hippocratic Oath doctors are supposed to believe and practice by--"to do no harm" among other facets. If Emilio's doctors truly believe he has no quality of life and never will, then why not spare the family the horror of watching him pass on in such a hideous manner until they are ready to let him go. If forced to "pull the plug" on Emilio, his mother will have to live the rest of her life with the nightmare of the whole ugly event etched in her memory, knowing she could not stop "the decision makers" because the law was on their side. "The powers that be" are sentencing Emilio's mother and family to a lifetime of pain and suffering I cannot even imagine! I have seen families who have come to terms with a loved ones ultimate demise, decided to "pull the plug," then second guessed themselves when all was said and done--these families struggled with the decision they made. For Emilio's family, proceeding with the termination of his life, based on a Texas law, will be nothing short of murder. If "the powers that be" cannot change their point of view, then at the very least give Emilio's mother and family time to accept he will not get better. Do not condemn this family to a life of misery and pain; because they did not do all they could for their very young beloved family member. Baby Emilio and his family deserve better from the U.S. healthcare system and the legal system. Laws like the one in Texas, will open the door to more heinous medical decisions, as Baby Boomers continue to grow older and flood the U.S. healthcare system with their medical needs. Allowing legislators and doctors and hospitals decide when a patient has no quality of life and when they should be allowed to die is nothing short of Euthanasia-which is illegal in the United States and very definitely in opposition to the Hippocratic Oath! http://en.wikipedia.org/wiki/Hippocratic_Oath#The_Hippocratic_Oath

Posted by: Lynn at April 10, 2007 4:01 PM

Lynn,

I need your help. The guardian ad litem needs to know what it will be like if he is removed from the ventilator.

Posted by: Jerri Lynn Ward at April 11, 2007 10:42 PM

There are other methods of healing and cure that are possible, and do not require expensive procedures. Emilio and his family and church have the inalienable right to seek healing in keeping with their spiritual beliefs and religious values. I know of two Christian healing ministries, in Houston and in Florida, that support education and medical research in spiritual healing -- Olivia Reiner, founder of "Listen to the Cries of the Children" (713)829-0899 and Francis MacNutt (author of "Healing") who leads the Christian Healing Ministries with his wife Judith http://www.christianhealingmin.org

Can we organize all resources nationwide to set up a network where people can turn for medical and healing help, even where others do not believe it is possible? I believe we have the right to pursue spiritual healing as well as to prove it medically so more people can receive equal access if they wish. How can we organize and set up a central location while connecting nationwide or worldwide.

Thank you,
Emily Nghiem
emilynghiem@hotmail.com

Listen to the Cries of the Children
Olivia Reiner 713-829-0899
o.reiner@yahoo.com

Posted by: Emily Nghiem at April 12, 2007 1:43 PM

OK, I'm no medical expert, but I am the mother of a beautiful 5 and half year old boy who has special needs. We took him to Cincinnati Hyperbarics when he was almost 2 years old. After 8 treatments he had a gag reflex. He had a total of 40 treatments and by the time we left to go home he was moving all 4 extremities, blinking his eyes and minimally coughing to clear his airway. Right now, he can open and close his eyes on command, nods his head when asked simple questions & tries to hug me. My point is that I know it works, and even if Emilio has infarcts in his brain, the HBOT will preserve what is still there and maybe the rest of his brain can compensate for what was lost.
Please don't let the hospital call the shots here, because I'll tell you: Good or bad,I would absolutely not trade 1 minute of the last 5 and a half years with Matthew for anything else in the world.
I also wanted to add that even though Emilio is on a vent, he can still go into a multiplace chamber with someone in there with an ambu bag to give him a breath every 3 seconds.
I'm praying for Emilio and his mommy. God Bless them.

Posted by: Kim Bermingham at April 26, 2007 6:37 PM

any updates?

Posted by: test at May 1, 2007 2:08 PM

Are there any updates? I'd like to know too!

Posted by: Kim Bermingham at May 1, 2007 6:50 PM

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

Posted by: woundedpig at May 2, 2007 8:54 PM

I suggest you read the following article from the National Catholic Reporter regarding the Schiavo situation and its impact on the current debate.

http://ncronline.org/NCR_Online/archives2/2005c/070105/070105i.htm

The discussion of the use of the ethic of reciprocity/application of the Golden Rule is quite telling. I tried to find another essay on the web that is also quite relevant here- an analysis of end of life decisions and human attachments, but could not find the reference. It speaks to the extreme difficulty some individuals have in allowing their loved ones have a peaceful demise. The essay uses the concept of pathologic/selfish/egocentric attachment vs a loving attachment and relates the family/spouse/parent's difficulty in making end of life decisions to the types and proportions of attachments at play.

The article from the National Catholic Reporter about the Golden Rule says this:

"...Finally, he suggested applying the Golden Rule and asking: "What would reasonable people think should be done or what would I want done if I were in a similar condition? Maybe all we have left is the ethic of reciprocity or the Golden Rule," said Rosell, an ordained American Baptist minister and an associate professor of pastoral theology -- ethics and ministry praxis -- at Central Baptist Theological Seminary in Kansas City, Kan.
Rosell noted that several hundred people have been given "the Golden Rule" test, including many of his family members and students. Despite professing vehement support for the continuation of life supports in the case of patients in a persistent vegetative state, Rosell said he has yet to find a single person who has volunteered to have tubes and a respirator attached to themselves in order to prolong their life were they to become permanently incapacitated with no prospects of improvement."

Jerri Ward refers to "Emilio's nurse" who gives a glowing report about Emilio's awareness and purposeful movements. This person is a nurse "planted' by Jerri as a visitor who has chosen to disgrace herself and her profession by reporting this misinformation. To take this nurse's word over that of a dozen or more independent pediatric sub-specialist physicians and many more critical care nurse's skilled observations is a true stretch and one of the tragedies of this case. To choose to believe this operative of Jerri's also involves accepting the paranoid and incredible belief that the entire hospital, all its physicians, and nurses are together conspiring to deceive the public and do harm to Emilio. Does this really pass the "smell test" to you?

The mother was ready to bury Emilio in February, having picked out his clothes, and repeatedly expressed the desire to not let him suffer or be kept alive by machines, and refused surgical procedures that would have prolonged the dying process. Then the third parties came into play, like the legislator (with proposed legislation to pith the state futility statute) who crashed the first ethics committee, not identifying who he was, pretending to be representing the family. For the forces that are "handling" Ms Gonzales, Emilio's plight has been lost and forgotten in their maneuvering. He became an abstraction and a pawn of the political agendas of others.

The economic argument is a hard one, I grant you. I do not believe that economics should play a deciding role in end of life decisions from the individual patient's point of view. But to deny that there is a huge societal question of social justice here is to truly be like the ostrich with its head in the sand or the monkey who covers his ears. Continued blind application of unfruitful, burdensome, non-efficacious medical interventions do nothing other than prolong the death of an individual, while offering no hope of changing the outcome. This is expensive. You are no doubt aware of the huge number of uninsured children in Texas, the huge number of unvaccinated kids. You probably know that children with no primary/preventative care make up a disproportionately high % of hospitalized and ICU patients, have a disproportionately higher risk of dying, and have significantly longer length of stay. What is your answer to this dilemma, when 16% of the nation's domestic product is already going to health care?
Doesn't the 1.5 million dollar bill for Emilio's care when multiplied over time feel a little different when you look at the health of society as a whole?

We often talk about natural death and not wanting to take the decision out of God's hands. From first hand experience over many years, I know with certainty that medicine is able to take the decision out of God's hands for a while- to postpone God's decision.

Back to the NCR article for a second:

"Rosell hopes to practice what he preaches. "As a Christian I lived my life and will die with regret that I have not sufficiently shared my resources," he said. So out of a sense of "distributive justice," he does not want his caregivers to expand services beyond those that will keep him comfortable in the last stages of his life.
Rosell and other ethicists pointed to the example of Pope John Paul who in the final week of his life chose to die at home without any infusions for his heart or the use of a heart pump or ventilator.
In her gerontology practice, Thibault has seen patients who were "detained from union with God" because of the needs of the caregivers. She recalled a woman who wanted to keep alive her 80-year-old husband, who was in a vegetative state, because she was dependent on his pension, which would stop at his death.
Thibault thought the issue of keeping a loved one alive at any cost will become "significant as baby boomers age." But she also noted that sometimes people need a little more time to hold on to their loved one to come to terms with their loss, especially if the cause of brain death has been sudden -- as opposed to death by dementia."

For a moment, put yourself in the shoes of the pediatric ICU nurse at Emilio's bedside during her 12 hour shift, watching him suffer with no hope of recovery, experiencing his loss of dignity as he must have his bladder catheterized or his stool extracted.

Also, in a careful, deliberate, and honest manner, apply the golden rule as suggested by Dr Rosell as you contemplate the manner of your own death and its impact on your loved ones. Will you apply the same rules and values to yourself as you seem willing to impose on others?

It is an exercise that all of us should experience for ourselves as we go thru life, so that our loved ones are well aware of our wishes at the end of life.

Posted by: woundedpig at May 2, 2007 8:57 PM

The legal team handling Emilio's mother has seen that public opinion and media coverage has not gone their way. Though Emilio's clinical status has been misrepresented to the public by their legal team, there are enough inconstencies in family statements and press releases {e.g., turning and fixing vision on family and turning to a sound while at the same time being blind and deaf since birth) that the general public knows that the baby's condition is much worse than represented. Responses to American Statesman articles are almost unanimously in favor of a peaceful end to Emilio's suffering.

Though Bishop Aymond has been attacked by zealots claiming his participation in a conspiracy, all but a few recognize that the Bishop is a Christian man of unquestioned integrity who is unlikely to have made such strong statements in favor of the hospital and physicians's views on Emilio's care unless he was sure of the facts and the theology. The family has rebuffed repeated offers by the Bishop to meet with them to discus the family's plight.
Jerri's crew wanted to postpone the probate court hearing till after the legislative session because of their fear of the outcome of the hearing. Emilio has not become the true poster child that they had hoped. The public has realized that Emilio is no Schiavo- Emilio is no elderly person being euthanized by family members inconvenienced by the responsibility of caring for their family member. Emilio is a critically ill patient on ICU life support in a nearly brain dead state- a baby with a terminal disease facing imminent death who is being maintained on life support with no hope of recovery or leaving the hospital. All this and many other inconvenient facts about Jerri's case would have come out in a court hearing with huge media coverage and in the public record.
At this point, the main goal of the extreme political interests in this case is simply that Emilio die on a respirator, however long that takes, as that would seem to be a victory or at least save face for them.
As was indicated in previous news reports, there is a hearing scheduled for May 8th

Posted by: woundedpig at May 2, 2007 9:03 PM