Annelise Camp, a 2-year-old girl whose family tried to block a Texas hospital from testing whether she was brain-dead after she drowned, died this week after life support was removed.
Her death on Monday, confirmed in a post online by the family and by a Texas lawmaker, ended a monthslong legal battle over where life ends and whether doctors must obtain consent to perform a brain death evaluation, which allows hospitals to remove a patient’s life support.
The Camps are part of a growing number of families and anti-abortion activists suing to stop physicians from performing the brain death test. Believing in the sanctity of life and looking to draw more support, they argue that the diagnosis is inconsistent with certain religious beliefs, though the procedure is considered standard medical practice.
Right-to-life activists say that a person is living so long as his or her heart beats — even if he or she is dependent on a ventilator for oxygen.
According to doctors, there have been no cases of patients recovering consciousness after they are confirmed brain dead.
It was not immediately clear what prompted the family to remove life support. In a post on Facebook, Annelise’s grandfather, Steven Camp, wrote that Annelise was extubated on Monday and then died quickly. The family did not return requests for comment.
“Annelise is now with Jesus,” the family wrote on their GoFundMe page. “While our hearts are broken, we trust in His perfect love, His faithfulness, and His promises.”
On Memorial Day, Annelise was found unconscious in a hotel swimming pool. She was taken to Texas Children’s Hospital and put on a ventilator. Doctors overseeing her care thought she was brain-dead, defined by law and the medical establishment as the irreversible cessation of brain function. Physicians can legally remove life support from patients who are declared brain-dead.
Annelise’s parents sued the hospital to block it from conducting the test for brain death, citing their “firmly held religious beliefs.” They said they wanted to transfer Annelise to another hospital that would treat her. Last month, she was moved to Ochsner Children’s Hospital in Louisiana.
On July 13, the Camp family said in an update on their GoFundMe that Annelise was showing “encouraging signs” at Ochsner, including regular bowel movements, strong organ function and heart rate responses.
About a week ago, Annelise was brought back to Texas, according to Steve Toth, a conservative Texas state representative who was helping the family with their case and who confirmed her death. He said that Annelise had been treated recently at Christus Mother Frances Hospital in Tyler, Texas, where the family had become close to a group of Catholic nuns. Neither Christus nor Ochsner responded to requests for comment.
Mr. Toth said he and other state lawmakers had discussed drafting legislation that would give families like the Camps more autonomy to decide when to remove life support.
“We want people to be more contemplative when they pull the plug,” he said. “We want hospitals to be more contemplative.”
In 1981, legal and medical groups introduced the Uniform Determination of Death Act, a template for a law that defined the end of life clinically as the irreversible cessation of circulatory and respiratory function or brain function. Most states adopted that law over the next few years, allowing doctors to remove life support if a patient tested brain-dead.
But some questions have persisted, including whether physicians must obtain consent before performing a brain death test, and whether there should be any religious exemptions. Efforts to address those gaps through an update to the Uniform Determination of Death Act have stalled because of disagreements.
On Thursday, Mr. Toth said in a phone interview that he had just spoken with Annelise’s father, Johnston Camp, who had just told his other two children that Annelise had died.
“There were a lot of tears,” Mr. Toth said Mr. Camp shared with him. “But he told them, ‘Our grieving knows hope.’”
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