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The last time Erick Munoz saw his pregnant wife conscious, she had gotten up before 2 a.m. to give their son a bottle.
When Marlise didn’t return to bed and with the boy still crying, Erick went in search of her. He found her unresponsive on the kitchen floor, her face blue from lack of oxygen. A short time later, doctors declared her brain dead at a Fort Worth hospital.
Marlise Munoz had been clear about her wishes never to be hooked up to life-support machines if she were fatally injured. But when the unthinkable happened to the 33-year-old mom, doctors told her family that they could not respect her wishes. Because she was 14 weeks pregnant, they would have to follow a Texas statute making it illegal to disconnect life support from a pregnant woman.
“The doctors told us that even if a pregnant woman has a DNR or a living will, the law supersedes that,” Munoz’s mom, Lynne Machado, told NBC News. “So any pregnant woman must be kept alive with life support because of the fetus. We had never heard of this and we wanted to get the information out there. No family should have to go through this. It’s been pure hell.”
Although doctors have been sympathetic to the family’s plight, they feel they have no other choice.
“We follow the state law on this," said J.R. Labbe, vice president of communication and community affairs for JPS Health Network. "We cannot withdraw or withhold life-sustaining treatment from a pregnant patient."
According to a 2012 report by the Center for Women’s Policy Studies, 31 states have laws that allow hospitals to keep women alive against their wishes if they are pregnant.
"What is quite stunning about these statutes for women is that they don't even take into account a woman's pain," said Lynn Paltrow, executive director of the National Advocates for Pregnant Women. "A woman could be in excruciating pain and near death's door and they still would force her to suffer.
"These are extraordinary laws creating separate unequal status for pregnant women in which they lose control of medical decision making, the right to bodily integrity and right to be free of excruciating pain."
No one knows exactly what happened to Munoz before she was found and rushed to the hospital on Nov. 26, but doctors suspect that a blood clot traveled to her lungs and blocked air flow.
“They won’t know for sure until they can perform an autopsy,” Machado said, her voice cracking. “And that can’t happen until she is no longer pregnant—either because she miscarries or the fetus can be delivered.”
When Machado and her husband arrived at the emergency room they found doctors and nurses hovering over their daughter, assessing her condition.
“They did a CAT scan and an EEG and there was no brain activity,” Machado said. “She was clinically declared brain dead. The doctors said she had been without oxygen for well over an hour.”
The family expected at that point that doctors would disconnect life-support and that they would say their goodbyes to Marlise.
When the family was told life support could not be disconnected, “my jaw hit the ground,” Machado said.
Stunned, the Machados and Erick Munoz tried to explain that this was against Marlise’s wishes. They told hospital staff that the family had had many conversations about what should happen if anyone became so ill that there was no chance of recovery.
Marlise’s brother died several years ago, but the subject had come up even before then, her mother said. Marlise and her husband, both paramedics, were well versed in issues of life and death.
“We were all on the same page,” Machado said. “None of us want to be on life support.”
Doctors told them there was nothing to be done, that Marlise Munoz would need to stay on life support until she miscarried or reached 24 weeks, when they could do tests on the fetus. “At that point they would decide whether to start labor, do a C-section, or see if she could go to 34 or 36 weeks when the fetus would be full term,” Machado said.
In the meantime there would be nothing for Marlise Munoz’s family to do. The family doesn’t know the condition of the fetus, and worries about the effects of an hour or more of oxygen deprivation.
“It’s been heart wrenching and we’re all emotionally drained,” Machado said. “It’s one thing if you don’t know what your child would have wanted, but if you do know and then for it not to happen . . . it’s been very frustrating for all of us.”
Linda Carroll is a frequent contributor to NBCNews.com and co-author of “The Concussion Crisis: Anatomy of a Silent Epidemic.”