Update: the hospital and doctors are working with the family and should be commended. We've edited some of the language from the email below in response to some of the comments that have been received.
Melanie Childlers, one of Andrea Clark's sisters, wrote the following disturbing message concerning Emilio Gonzales, the 16-month-old boy who is set to be taken off "life support" against his mother's wishes:
Emilio Gonzales is a sixteen month old infant at Brackenridge Children's Hospital in Austin, TX. He has been diagnosed with Leigh's disease. Leigh's disease is a genetic malady which is caused by a lack of functional mitochondrial complexes. There is NO DEFINITIVE TEST for Leigh's disease, and physicians usually diagnose it based on symptoms, alone. There are tests which can back up the diagnosis, but let me reiterate: there are no definitive tests for this disease.[snip]
This disease is usually treated with thiamin, but these physicians decided to take him off of treatment. It was only when his lawyer, Jerri Ward, insisted that they put him back on the treatment that they did so. These children can live, and often do live, to be about six or seven years of age. This child is sixteen months old and these physicians have decided not to give him a chance at the rest of his life, despite his family's wishes to the contrary.
We have been in touch with the Bishop of the Austin Diocese--Bishop Aymond--who you would THINK would stick up for the life of this little child, ...Related:Please, also get in touch with Brackenridge Children's Hospital, in Austin, TX. ....
[snip]
- Toddler Going Off Life Support Despite Mom's Wishes - News coverage with video and pictures
Baby's life hangs in balance at hospital - Doctors say it's time to withdraw treatment; mother says it's too soon
Texas: Baby's Mom Receives 10 Day Notice - The futile care law is an abuse of power with anonymous people playing god with other people's lives. Where is the accountability? It's time the futile care law be removed from the books and human life be returned to something valued not devalued and so easily tossed away.
Texas Patient's Rights - the organization founded by Andrea Clark's family following their battle for her rights.
Update: here is a letter written by Diane Coleman, President of Not Dead Yet:
NOT DEAD YET Letter Opposing the Texas Futility LawAnd, here's a press release from Not Dead Yet:
Dear Governor Perry,I am writing on behalf of Not Dead Yet, a national disability organization that fights legalization of assisted suicide, euthanasia and other types of medical killing. The Texas chapter of Not Dead Yet has been part of the effort to overturn the current draconian "futility" statute in your state - an effort that has been effectively stonewalled by the special interests of medical facilities, medical professionals and bioethicists'.
Unfortunately, the latest implementation of this statute can't wait for a change in the law. Emilio Gonzales, who is 16 months old, will die next week when the Children's Hospital of Austin removes him from a ventilator.
According to news reports, Emilio's use of a ventilator lacks "dignity" and merely "prolongs death," according to the ethics committee at Children's Hospital.
As president of this national group, I can tell you that the nation has been watching Texas for some time with increasing alarm.
On behalf of our allies in Texas and their concerned allies around the country, I request you order a "stay of execution" for this young child.
If you need reasons other than simple humanity, here's one that might help: Since Emilio is a Medicaid recipient, he falls under the protections afforded by Section 504 of the Rehabilitation Act of 1973. Removal of his ventilator - against the express wishes of his mother - violates his civil rights under Section 504. In addition, the due process right to a hearing arises when Medicaid benefits and services are reduced for an individual. If the recipient's parent has even been duly notified of this right, no such hearing has taken place. Any theory that the ethics committee procedure satisfies Medicaid hearing requirements is ludicrous.
But right now, what's most important is a child whose brief life will be snuffed out shortly - and with not even one of the protections that would be afforded death row prisoners.
Please intervene. Now.
Sincerely,
Diane Coleman, J.D.
President Not Dead Yet
7521 Madison St. Forest Park, IL 60130
708-209-1500 ext. 11
www.notdeadyet.org
The mother of this child wants the doctors and the hospital to continue treatment. The doctors say it is "futile" and have started the 10 day clock, that which at the end of these ten days unless the mother has found another doctor or facility to treat her son, the doctors in Austin will discontinue care and he will die. They say care is "futile", the mother says give her more time!!!Though the medical specifics are complicated and the legal issues byzantine, the disability rights issues are not.
Simply stated the hospital and the doctors are going against the stated wishes of the legally responsible person, the mother, who has stated her opposition to their "godlike" position.
The disability rights movement was founded on the fundamental concepts of "choice and control." Our medial diagnosis shouldn't allow the medical community to override our wishes or the wishes of our legally authorized representative.
A person on death row in Texas gets more protections than the child in Austin is allowed by Texas' "futile care" law. The hospital ethics committee has met and the ten day death clock is ticking.
Ten days and your dead!
We must speak out. There is a bill in the 80th Legislature that would change our current "futile care" law to "treatment pending transfer".
The doctors and hospitals are against it.
This disability community represented by the Texas Disability Policy Consortium has a position supporting "treatment pending transfer".
However while these political wranglings go on, it is likely the child in the Austin hospital will be dead, caused by the arrogance of the medical professions not to listen to the wishes of his mother.
Why are doctors in Texas allowed to override our decisions?
PLEASE ACT TODAY!!! TIME IS CRUCIAL. The Ten day death clock is ticking!
Please contact Texas Governor Perry's office and ask him to give the child in the Austin hospital a reprieve. He can give reprieves to death row inmates. He can save the life of the child in Austin.
The person to contact in Governor Perry's office is Nora Cox:
ncox@governor.state.tx.us
Thank you,
Bob Kafka
NOT DEAD YET of Texas2
Update: Saving Emilio - North County Gazette has more information related to the press release above.
From a reader:
Regarding "Toddler Forced Off Life Support - Help Needed", thank you for your support for the life of the precious toddler. We must be very careful in our statements, however, to avoid misconceptions. The statement " Bishop Aymond's number is: 512-476-4888. Please call him and if you can't get him on the phone, leave a message, letting him know how you feel about the Catholic Church's approval of the murder of this small child" is inaccurate, in that the Catholic Church does not approve of the murder of children.So noted .... thank you.
Update: we'll send you a daily email notifying you of the latest news:
Here I am in Korea and I don't have a phone! Augh!
But I did pass it on.
I have some trouble with this view. Is not 'life support' also not taking God's will out of God's hands?
I believe it is very harsh judgement to keep repeating that those who are for removing the life support are 'killing' this little guy, who perhaps God wants in His kingdom now.
I do believe in hydration and food, but you are not being specific on what 'life support' includes in this article.
The Ethics committee said:
The Ethics Committee further recommended that the treatment plan for the patient be modified to allow only comfort measures (such as hydration, pain control and other interventions designed to decrease the patient's suffering ). They decreed that new complications that develop should not be treated, except with additional palliative measures, as appropriate, the patient's code status be changed to a DNR and appropriate spiritual and pastoral care resources should be provided to Emilio's mother and family members.
and also:
It was noted by the committee that the physicians and other members of the treatment team have contacted multiple children's hospitals in Texas, and none of the facilities contacted have agreed to accept him as they believe they have nothing more to offer him and that any treatable conditions affecting Emilio have been eliminated.
It looks like God has spoken. Sometimes we don't like to hear it.....
Bishop Aymond is the "chair of the USCCB's Committee for the Protection of Children and Young People", according to the website of the Diocese of Austin. He's doing some job protecting this little child, isn't he?
"it looks like God has spoken" - I'm sorry, I don't share the same lofty view of the hospital ethics committee.
Plus, we are finding out that the hospital may be wrong about him being a candidate for a trach which would enable him to go to long term care.
Further, you don't know what the doctors have been telling the other hospitals.
I've tried to explain some of the medical issues in my blog, today. http://www.lifeethics.org/www.lifeethics.org/2007/03/leighs-disease-long-post-on-end-of-life.html
This is truly a heart breaking story. But, after reading the Ethics Committee's report it seems like this poor baby is being kept alive by extraordinary means with no prospect of recovery, and is suffering. I began reading the Ethics Committee's report thinking that I would contact the hospital and the Archdiocese, but when I finished it, I believed that the doctors were acting in the baby's best interest. We should all pray for Emilio and his family. I cannot imagine the pain they are in.
My family has experienced Leigh Syndrome firsthand, and I can think of no word to adequately describe how devastating it is. I was behind my family's decision to remove our loved one's ventilator--she was in the advanced stages of this terrible illness--and it was time for her to go home. There was only so much that could be done, and a long goodbye wasn't going to change that. My heart and prayers go out to little Emilio's mother and the rest of his family.