AUSTIN, TEXAS---The clock is ticking.

The Texas Futile Care Law is at work again, trying to claim yet another life, this time that of a 16-month old baby boy.

If another hospital can't be found where Emilio Gonzales can be transferred before Friday, doctors at Brackenridge Children's Hospital of Austin will withdraw a respirator from the baby which will result in his death, against the wishes of his mother.

Emilio has been diagnosed with Leigh's disease which causes the central nervous system and muscles to degenerate. Doctors say that his brain is shrinking and that there is no hope for recovery.

Dr. Renee Higgerson, who previously served as Emilio's attending physician, has certified Emilio's condition as irreversible. Dr. Jeffrey Kane, Emilio's neurologist, has stated that the neurological prognosis is for continued brain atrophy.

On Monday, March 12, the hospital's ethics committee gave Emilio's mother, 23-year old Catarina Gonzales of Lockhart, 10 days to find another facility or physician to treat the child and decreed that at the end of the 10 days, under the Texas Futile Care Law signed into effect in 1999 by then Texas Gov. George W. Bush, the infant's life support would be removed because in their view, it is medically futile to keep the baby alive.

Austin attorney, Jerri Lynn Ward who represents the child's mother, says she doubts that a Texas hospital can be found to take Emilio. His mother says that she will do everything possible to find an out-of-state hospital to which her child can be transferred.

"The patient will continue to be given life-sustaining treatment until he can be transferred to a willing provider for up to 10 days from the time a copy of this letter is provided to the patient's mother", the Seton HealthCare Netword Neonatal/Pediatric Ethics Committee wrote in their report on March 12.   ETHICS REPORT

"If a provider cannot be found who is willing to give the requested treatment within the 10-day period, then all aggressive care measures (including, without limitation, the use of the ventilator) may be withdrawn and the patient's treatment plan may be modified to allow for only comfort care measures, unless a court of law has granted an extension of the time in the manner and for the reasons outlined under applicable law", the report said.

The committee concluded that "The current aggressive treatment plan for Emilio amounts to a nearly constant assault on Emilio's fundamental human dignity, and with little, if any, corresponding benefit to Emilio. Thus the burdens associated with such care clearly outweigh its benefits.

"As a consequence, the Ethics Committee believes it is medically inappropriate to continue aggressive care measures, including but not limited to the use of the ventilator.

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.

"In summary, the consulted members of the Ethics Committee concur with the recommendation by the attending physician and patient care team to withdraw aggressive care measures, including use of the ventilator, and to allow palliative care only. The attending physician, with the help of the Children's Hospital of Austin, will continue to assist the patient's family in trying to find a physician and facility willing to provide the requested treatment. The family may wish to contact providers of their choice to get help in arranging a transfer", the report said.

"Since the initial consultation with the Neonatal/Pediatric Ethics Committee on Feb. 19, there have been multiple conferences with Emilio's mother and surrogate decision-maker, Ms. Catarina Gonzales, to discuss his condition and his recommended treatment plan", the committee wrote in their report. "There continues to be no consensus between the Ms. Gonzales and the treatment team regarding the appropriateness of the care being provided for Emilio. Consequently, on March 7, Ms. Gonzales was given written notice under applicable Texas law that a meeting and consultation with this Ethics Committee would be held of March 9. Ms. Gonzales was invited to attend and did attend the consultation, along with the members of the Ethics Committee, the attending physician, other members of Emilio's treatment team, and other invited guests, including members of Emilio's family and legal and other advisors representing Ms. Gonzales.

"The meeting began with a brief review of Emilio's medical history and a discussion of development in his clinical condition and care since Feb. 19, which was led by Dr. Alexandra Wilson, Emilio's current attending physician, and included information provided by other physicians and other members of Emilio's care team. Then Emilio's mother and her representatives and the members of the Ethics Committee were invited to ask questions of Emilio's patient care team. Once all questions had been addressed, the Ethics Committee then convened in executive session to deliberate about the information provided and to reach a consensus.

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.

The central issue in the Gonzales case is the same as in the Terri Schindler Schiavo case and that of Andrea Clark as well as many others---should the state be able to sanction the removal of a human being from life support?

The Texas bill that allows health care providers to end a human life despite the wishes of the patient and the patient's family was signed into law in 1999 by President George W. Bush as Texas Governor. However, in 2005, he rushed back to the White House from Easter vacation to sign a bill rushed through Congress which was designed to save the life of Terri Schiavo because of his "presumption in favor of life".

Under the futile care law, once the decision is made, by law the hospital is authorized to discontinue the disputed treatment after a 10-day delay during which the hospital must try to find a facility that will accept a transfer of the patient.

Melanie Childers and Lanore Dixon, sisters of Andrea Clark, have joined with many individuals and groups to oppose and repeal the Futile Care Law. On April 19, 2006, the ethic's committee of St. Luke's Episcopal Hospital in Houston gave Andrea's family 10 days to find another facility or physician to treat the 54-year-old heart patient and decreed that at the end of the 10 days, on Sunday, April 30, under the Texas Futile Care Law, Andrea's life support would be removed because in their view, it was medically futile to keep her alive.

Andrea's attending physician, Dr. Ronald Giveon, made the decision to remove her from life support and then left for vacation. His decision was supported by the hospital's ethics committee and the respirator and dialysis keeping Andrea alive were scheduled to be removed from her on Sunday, April 30, 2006.

After plans to transfer Andrea to a facility in Chicago fell apart on Friday, the hospital reportedly agreed not to remove the ventilator and discontinue dialysis of Andrea until at least Tuesday while the search continued for a facility where she could be transferred.

The case became high profile with protests conducted at the hospital and the facility receiving numerous phone calls and emails from individuals around the country furious about the hospital's plan to end Andrea's life.

The futility care proceedings were discontinued with the entry of a new doctor into the case. Unfortunately, Andrea later died of other complications. http://www.northcountrygazette.org/articles/050706LosesFight.html

Childers and Dixon are asking the public to become involved in the Gonzales case. Although the doctors say that Emilio is comatose and near death, his mother says he is responding to her.

Gonzales is a single mother and become of childbirth complications, Emilio is the only child that she will bear.

Gonzales says that doctors have ignored her wishes and have stopped some treatments without her consent. Doctors say Gonzales constantly changes her mind. Gonzales quit her job as a Wal-Mart cashier last May to take care of her son and last month stopped her schooling to become a paralegal. She says that they are forcing her to sanction the killing of her son because they say there's no cure for Leigh's disease.

Texas Right to Life, Not Dead Yet and other disability rights organizations have become involved in the case and have asked Texas lawmakers to change the state's Futile Care Law that sets up the 10-day death sentence for patients who an ethics committee declares are medically futile to treat. The hospitals and doctors say the law is working just fine and there's no cause to change it.

Emilio is on Medicaid and many have charged that treatment is stopped for such critically ill patients as Emilio in order to save money. Gonzales had agreed that doctors could gradually withdraw some treatments such as those that could be painful to her son such as aggressive respiratory therapy treatments. However, Gonzales says that doctors also stopped administering antibiotics and vitamins without her consent and began giving him morphine which she says will make it harder for her son to breathe. She says that one doctor also said that they were going to stop feeding the child, in essence starving him to death.

After she made an issue of it, the medical staff agreed to maintain feedings. Doctors said that the antibiotics and vitamins were no longer needed and that the morphine would help ease pain but wouldn't affect the infant's breathing.

"Please just keep this little family in your prayers", Melanie Childers asked in an email to The North Country Gazette. "The mother can't have anymore children, because of the difficult birth of little Emilio. She has quit school and quit her job so that she can be with him. The poor woman doesn't speak English very well and the doctors and staff at the hospital are running roughshod over her; saying that she told them to go ahead and stop feeding her son, when she didn't, of course.

"Having lost my own little boy, Keith, to cystic fibrosis, I know that it must be an unimaginable cruelty to this mother to have to battle the hospital for the life of her son. It's hard enough watching your child die, but to have to worry about the very people that you thought would take care of him killing him--well, it's just unspeakable".

She says that 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", Childers says.

"There are tests which can back up the diagnosis, but let me reiterate: there are no definitive tests for this disease. A group that practices in-house at Brackenridge Children's Hospital, in Austin, called The Pediatric Physicians Alliance of Central Texas, has decided that Emilio Gonzales should die. Although not all of the test results are in, and even if the were, they would not be a definitive diagnosis of Leigh's disease, Emilio Gonzales is set to have his respirator removed this Friday".

"This disease is usually treated with thiamin, but these physicians decided to take him off 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 16 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, but who instead supports killing little Emilio Gonzales. I guess if you're on Medicaid, your life just isn't as worthwhile as it would be if you had good insurance", Childers say.

"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. Keep in mind: This is a Catholic-owned hospital! The head of the Catholic Conference of Bishops is Andrew Rivas. His phone number is 512-339-9882; please call him and let him know how you feel about this issue.

" Please, also get in touch with Brackenridge Children's Hospital, in Austin. Their number is 512-324-8000. Let them know how you feel about their murdering Emilio Gonzales. Maybe if they get enough calls through their switchboard, they might change their mind about killing this little boy.

Dianne Coleman, president of the disability rights organization, Not Dead Yet, is actively involved in overturning the futility care law, "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 this week when the Children's Hospital of Austin removes him from a ventilator", Coleman says. "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".

Coleman has asked Texas Gov. Rick Perry, "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", Coleman told the Governor.

"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".

"Though the medical specifics are complicated and the legal issues byzantine, the disability rights issues are not", Coleman says.

"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 10-day death clock is ticking.

"Ten days and you're 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.

"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   3-18-07

© 2007 North Country Gazette