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Deadline approaches for terminally ill child
12:05 PM CDT on Tuesday, April 10, 2007
Time is quickly running out for a terminally ill child. Doctors plan to take a 17-month-old boy off of life support this week.
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Catarina Gonzales is fighting to prevent Austin Children's Hospital from taking her son Emilio off of life support.
The child has an incurable neurological disorder, Leigh's Disease, causing his brain tissue to die. The boy's mother is still trying to find another hospital to care for her son.
"I'm never going to be ready to do this. It's just really hard," said Emilio Gonzales' mother, Catarina. She says she cannot believe these may be her son's final hours. "I'm just waiting right now to see. I'm scared."
Gonzales says Emilio is doing better, even breathing on his own a little. But doctors have ruled his condition hopeless. He was born deaf and blind, and during his first year of life, his condition worsened.
Seton Hospital's ethics committee ruled that Emilio should be removed from life support. That deadline is just hours away.
"What were hoping is that someone will come forward - a hospital will come forward and a doctor will be willing to take Emilio, perform that procedure so that he can go to a lower level of care," said Jerri Ward, Gonzales' attorney.
Ward said they have promising new leads which could sustain his life.
"Emilio could have a tracheostomy and a g-tube," she said. "It would make it much easier to transfer him to long term care or even to home care."
Seton Hospital says none of their doctors are willing to perform a tracheostomy because they say the youngster is in such poor health that such an operation could take his life.
Ward says they will ask a judge for a temporary restraining order Tuesday morning.
"We're hoping he will give us more time."
Texas law allows hospitals to deny patients life-sustaining treatment. It allows it to end life-sustaining treatment in medically futile cases after a 10-day notice to the family. That deadline was voluntarily extended while the hospital and family tried to find another facility to care for Emilio.
That law is up for debate at the Capitol.
"This is a really sad situation," said State Representative Bryan Hughes. He is the author
of a bill that would shift the ultimate decision back to the patients and their families.
He knows this bill comes too late to help little Emilio, but he hopes it brings attention to an important issue.
"Texas law, legally, gives too much power to medical providers and not enough to patients and families," said Rep. Hughes.
"No one knows how long he could live with this disease if given proper treatment," said Ward. She believes the decision of whether Emilio lives should be up to Emilio's mother. Gonzales wants more time with her son.
"I'd do anything for my son. I love my son. He's the most precious thing I'll ever have," said Gonzales.
Seton Hospital has already extended the deadline to end life support once, giving the family more time to find another facility to care for the boy. No other facilities have come forward. The hospital will wait on the judge's decision.
"If the judge does not grant the temporary restraining order and the time is not extended, then we'd expecte we'd move to a 'comfort care plan' sometime on Wedenesday and that would involve removing Emilo from the ventilator and continuing to treat his pain and providing him with artificial nutrition and hydration until he would die," said Michael Regier, with Seton Hospital.
A state Senate committee on Thursday plans to hear testimony on proposed changes to the 1999 law.
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The Associated Press contributed to this report
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