Parents of a 2-year-old girl involved in a drowning incident on Memorial Day have sued to stop Texas Children’s Hospital from testing if she’s brain dead, testing a new strategy in Texas’ “right to life” movement aimed at giving people as much access to life-supporting services as possible.

While most fights to keep patients on life support begin after they’ve been given a brain death diagnosis, Annelise Camp’s parents are battling the hospital at an earlier stage, the testing phase. 

“This is not settled science,” said state Rep. Steve Toth, R-The Woodlands, who has helped drive the public’s attention to the Camps, who live in Cypress.

Brain death is defined in Texas law as the irreversible cessation of brain function. Under the law, once a patient is declared brain dead, a hospital can withdraw life-sustaining measures. 

According to court documents, the Camps say Annelise shouldn’t be tested for brain death so she can have more time to recover. They also ask that she be transferred to another hospital to explore other treatment options. However, Texas Children’s has stated it wants to conduct testing to determine next steps in her medical care and that it has no imminent plans to end care for Annelise. 

This case has drawn the attention of Texas Attorney General Ken Paxton, who posted on X in support of the Camp family: “I am closely monitoring this case and will act to protect this child and honor her parents' efforts to save her.” Influential anti-abortion group Texas Right to Life has started working with the family, too.

Given growing attention to the Camp family’s fight, bioethics and legal experts say that this could empower other families to fight brain testing, which is becoming more common. The case has already inspired at least one lawmaker to create new laws and build on Texas’ existing laws that protect the rights of patients and their families to extend life-sustaining services and access experimental treatments. 

The lawsuit is the latest chapter in a yearslong fight among some right-to-life advocates to end the brain death diagnosis because they believe multiple organs have to fail to be considered a biological death. 

Meanwhile, medical experts believe there needs to be a “clear line” that distinguishes life from death otherwise ICUs would lose capacity to treat patients that have a chance of recovery, said David Magnus, a Stanford University medicine and biomedical ethics professor.

It appears no courts in Texas have determined the legality of brain death tests, said Thomas Mayo, professor emeritus of law at Southern Methodist University. If the state district court rules in the family’s favor, it would not be binding in other courts, Mayo said. 

However, “if Texas Right to Life is involved in any way, and the family loses, this case would likely go to appeal,” he added. 

The brain death debate

The Camp family were visiting relatives on Memorial Day, when Annelise wandered into the hotel pool without her life jacket, Johnston Camp, Annelise’s father, told FOX 26 Houston in early June. She was pulled out of the water by family members who began CPR until first responders arrived. Camp was taken to Texas Children’s west Houston location and after an hour her heartbeat returned.

“She never gave up when I asked her to do something… I’m never gonna give up on her," Camp told the station. 

Since the interview, the Camps have declined speaking to The Texas Tribune, citing a court order that prevents them from doing so, said their lawyer Heath Novosad. Texas Children’s has also declined to comment on the case. 

Three days after Annelise was hospitalized, her parents filed a temporary restraining order against Texas Children’s after physicians said they had exhausted all treatment options and advised that the child get tested for brain death, according to court documents filed in late May. The documents say Annelise’s heart was beating, although she was dependent on a ventilator. The Camps have refused any brain death testing and want to transfer Annelise to another hospital to receive hyperbaric oxygen treatment or stem cell therapies. 

Texas Children’s officials said in court documents they’ve contacted medical facilities to ask about accepting Annelise, but 35 of the 36 have declined and the one pending hospital said it needed her to undergo brain death testing to consider transfer.

The court granted the family’s request for a temporary injunction and the family is asking for a permanent halt to brain testing. 

Hospitals usually notify family members, but are not required to get permission from them or the patient to conduct brain death testing. 

Under the Uniform Determination of Death Act, if someone is determined brain dead, they are considered legally dead and hospitals have the right to discontinue organ-supporting services. 

According to Texas Right to Life, which has long fought the legal recognition of brain death and its use to stop life-sustaining measures, brain death is not consistent with the Christian faith. As long as there is a heartbeat, a person is still alive. The Camp family has stated in court documents brain death testing is against their religious beliefs.

“Texans have the right to say we don't believe in this,” said John Seago, president of Texas Right to Life, adding that his organization has worked with 106 patients to fight for life-sustaining treatment, an increase in the last three years. “A dead person has no rights, and that's the problem with the brain death concept, in general, is it is a shortcut to deprive individuals of the right to life and other rights.”

Magnus, the Stanford professor, said that if hospitals are no longer able to diagnose someone with brain death and are forced to keep more people on life support, this could strain resources, such as ICU beds.

“Using that scarce resource for somebody who has no chance of ever making any recovery doesn't really make a lot of sense,” he said. “When the hospital beds are full, Texas will not be a good place to get sick.” 

Magnus worries that if hospitals are no longer allowed to recognize brian death diagnosis, organ procurement could decline which places the burden of organ donations on other states or else, many Texans could be at risk of dying.

“That means that if you have renal failure, you die. You have liver failure in Texas, you’ll die. When you have heart failure in Texas, you’ll die,” he said. 

While some of the loudest critics of the brain death diagnosis have been among anti-abortion advocates, not all are in agreement. Texas Alliance for Life points out that the definition of death in state law is based in “sound medical science,” its executive director Amy O’Donnell said. She declined to comment specifically on Camp’s case.

Room to expand “right to life” laws?

In the last few decades, Texas legislators made attempts to create and fine-tune “right to life” laws that expand the rights of those who have been declared brain dead. None have addressed brain death testing, which is ripe ground for new legislation.

“We passed legislation in the state of Texas and we think people will just follow it,” Toth said. 

In 2023, state lawmakers expanded the Right to Try law – originally limited to terminally ill patients – to give chronically ill patients access to investigational treatments if they had exhausted approved options. The same year, the Legislature changed the Texas Advance Directive Act, so that hospitals must give families of patients 25 days’ notice before pulling life support, increasing it from 10 days. Although, groups like Texas Right to Life believe that there should be no time limit.

This change came three years after the family of 1-year-old Tinslee Lewis challenged the advance directive act, also garnering national attention. Lewis was born with a rare heart defect that kept her on life-support in Cook Children’s Medical Center’s ICU from birth. Leveraging the law’s life-support time limit, doctors at the Fort Worth hospital wanted to take Tinslee off life support against her mother’s wishes and an appeals court ruled in the family’s favor. Lewis was discharged after two years, according to CBS.

Toth, who carried the House version of the bill that changed the Right to Try law in 2023, said he would push to give families the right to contest the brain death test and make it difficult for hospitals to procure organs from patients declared brain dead.

Toth, who won the Republican primary for Texas’ 2nd Congressional District in Houston in the spring, ultimately wants to eliminate the brain death diagnosis on a national level. 

“I think that we've got to be really careful at just observing the rights of parents to make this decision, this call for themselves," said Toth. 

Texas does not have legislation that provides for a reasonable accommodation of a religious objection to brain death, said Mayo.

If the brain death diagnosis was taken off the books, hospitals can still leverage the Texas Advance Directive Act which places a time limit on how long a hospital is responsible for life-supporting treatment, Magnus said, but “courts in Texas have been inconsistent about applying their own law.”

“Courts in other states have gone back and forth over whether a determination of brain death can be done at all, and whether once it's done, the physician's findings are determinative of further treatment or stopping treatment. I think it's a very, very emerging question that is getting disparate treatment in various jurisdictions,” said Mayo.

In these cases, the courts will usually tell the hospital to keep the patient on life support, said Magnus. "Basically the courts don’t want to be the one that makes [the brain death] determination,” he said.

Disclosure: Southern Methodist University and Texas Children's Hospital have been financial supporters of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune's journalism. Find a complete list of them here.

This article first appeared on The Texas Tribune.