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Mother Fights Hospital's Decision to Remove Her Son's Life Support.

As NRL News goes to press, unless another hospital will admit him or a court intervenes, Children's Hospital of Austin will remove 16-month-old Emilio Gonzales from life support on April 10. Although his mother has specifically requested that the hospital should continue treating her son, Texas law allows doctors to override her decision and remove his ventilator.

Emilio's mother, Catarina Gonzales, told NRL News that she holds no unrealistic expectations; she recognizes that Emilio is quite ill but she simply wants him to die naturally, not by a direct act of euthanasia by his doctors.

Although tissue and bone testing have not yielded a definitive diagnosis, Emilio is suspected to have Leigh's disease, a disorder of the central nervous system that causes deterioration in motor skills. He has been at the hospital since December, currently breathing with the help of a ventilator (through his mouth and throat) and receiving nutrition through a nasogastric feeding tube.

"I know there's no cure. I know my son is going to die," said Gonzales. "But I want him to die when God calls him, not when someone pulls the plug."

According to information found on the National Institute of Neurological Disorder and Stroke web page, people with Leigh's disease "may live to be 6 or 7 years of age. Some have survived to their mid-teenage years."

But doctors at Children's Hospital have declared that further treatment for Emilio is "medically futile," and they had originally scheduled removal of the ventilator for March 23. They contend that Emilio "is in seizures half the time and has no purposeful movement," Michael Regier, general counsel for the Seton Family of Hospitals, told the Associated Press.

However, Gonzales insists that her son is conscious and deserves a chance to live. "He responds to my voice," she said. "He is deaf in the left ear but can hear on his right. He opens his eyes and moves his hands and legs."

State legislators held a press conference in conjunction with Texas Right to Life at the Capitol in Austin and invited Catarina Gonzales to attend. The purpose of the press conference was to highlight the need to change the Texas law and to put a face to the victims of this law. This press conference was held March 20, just days before the original time when treatment was slated for removal. Shortly after the news coverage of Emilio's story, the hospital gave Gonzales more time to find an alternative facility and set a new date of April 10 for life support removal.

Texas law falls firmly on the side of the hospital. "You have control over nothing," Gonzales's attorney Jerri Ward told NRL News. "The hospital has total control over your body, records, and decisions."

According to the law, passed in 1999, if doctors determine that life-sustaining treatment requested by a patient's family is "futile," the case is taken to a hospital ethics committee. If the committee agrees with the doctors, the family is given 10 days to find another facility and move the patient, or treatment will end.

Emilio's plight and the plight of dozens of other victims of the law have inspired lawmakers, Texas Right to Life, disability rights advocates, and others to pursue changes to the law. State Rep. Bryan Hughes has filed a bill that would eliminate the 10-day cutoff and require treatment to continue until a transfer can be arranged.

Eleven other states require treatment pending transfer to another physician or facility. "Ten days is not long enough for a patient in these circumstances," said Hughes, according to the AP.

"Put yourself in my position," added Gonzales, the American-Statesman reported. "How would you feel if I was a doctor and I said, 'Your son only has 10 days to live and if you can't find a facility, we're going to take him off a respirator ... Friday.'"

As of press time, no other facility has agreed to admit Emilio. If Emilio was surgically provided a tracheostomy and gastric feeding tube, he would be eligible for transfer to some pediatric long-term care facilities or for home care. Pediatric surgeons and facilities to provide these for Emilio are actively being sought.

Gonzales will continue to fight to make sure that her son is treated properly for as long as needed. "I can't take him off [the respirator]," she told the American-Statesman. "I don't want to take him off, and I don't want him coming to me at night, haunting me, and me thinking I didn't do everything I could."
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Title Annotation:Catarina Gonzales
Publication:National Right to Life News
Geographic Code:1U7TX
Date:Apr 1, 2007
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