A trip to the intensive care unit left one Waxahachie family fighting for the rights to keep its two-year-old daughter on life-sustaining treatment.
After 17 grueling days at the hospital, their struggle ended — and not by choice. Their fight, however, is far from over, as the family will now focus efforts to change Texas law to allow parents autonomy and not physicians.
It was June 12 when Blaire Bravenec, 2, was found drowning in the family's pool.
She was flown to Children's Medical Center in Dallas and her father, Darren, said it was a miracle that emergency medical services personnel were able to retrieve a pulse.
That was the first glimpse of hope for the Bravenec family.
"She has always been giant for her size. My most proud moments were taking her to her pediatrician," Darren said. "The last two or three times, she was always greater than 100 percent, and she was never heavy. She was beautiful — as tall as could be, super, super blonde, and there were no imperfections with her at all."
Darren recalled Blaire's beautiful voice trumped the radio in car rides and she always cared for her six-month-old brother. Blaire consistently proved her intelligence at the daycare that enrolled children of Red Oak ISD staff. Her mother, Emily, teaches fourth-grade at Donald T. Shields Elementary in Red Oak.
"Every dad is going to brag about their daughters," Darren said. "I truly think she was as remarkable and as far ahead as she got because God knew we were going to lose her and wanted us to have as many joyous and memorable moments with us."
A FIGHT FOR LIFE
The family was put on the defense day one at the hospital "with the way the physician said things." Three days later, on June 15, the family was told an examination of brain activity would take place, and if it returned negative, then that would be the time of death documented.
"It was like, 'wait what?' Everything hinges on this one thing," Darren questioned.
Texas State Health and Safety Code explains the definition of death is when there is an irreversible cessation of the person's respiratory and circulatory functions or irreversible cessation of all brain function, including the brain stem.
Alliance for Life Executive Director Joe Pojman, Ph.D., has lobbied for pro-life issues in Austin for 27 years and has played an integral role in the passing of major pro-life bills.
After the Daily Light referenced the Bravenec case, Pojman immediately voiced his heartfelt condolences to the parents.
"That is just so tragic, the pool accident, and the little girl that died from that," Pojman expressed. "For any parent, just excruciating to watch. Our hearts go out to that family and husband and wife."
Pojman went into detail on how death is determined by physicians and explained the process families take to appeal decisions made by doctors.
"Texas, like every other state, has a law that defines death," Pojman said. "For decades now, Texas has had virtually the same definition of death in our law. That is based on very sound medical science."
Pojman noted that doctors issue a variety of tests to understand brain activity, and once the circulation test exhibits zero blood flow, the findings are definitive.
"The cells die within minutes at that point," Pojman said matter-of-factly.
To his knowledge, this code has never been challenged in court.
When a person is terminally ill, the doctor may advise the family that life-sustaining treatment should not be continued.
Doctors suggested removing Blaire from life-sustaining treatment the day of the brain death test, but the family knew she had more fight in her.
Typically, if the family disagrees, it would appeal the decision for life-sustaining treatments to discontinue through the hospital's ethics committee. The state has a dispute resolution process in law, which is seldom used outside of a couple dozen times a year, according to Pojman.
"If the ethics committee agrees with the physician that life-sustaining treatments are not medically appropriate, then the hospital by law and the physician has to — if the family wants this — to help find an alternate willing provider, another hospital or another doctor within the same hospital," Pojman explained.
Pojman has heard of one instance where a family contacted 66 other hospitals in Texas to find an alternate provider for a patient with terminal pancreatic cancer.
"So, it can be a diligent effort," Pojman noted.
By law, the hospital has to continue the life-sustaining treatment for at least 10 days, but sometimes can extend that weeks or months. After the 10 days, doctors have full rights to remove life-sustaining treatments.
Doctors also have a safe harbor that prohibits them from being sued for the death of the child.
The Bravenecs bypassed the entire ethics committee with public officials and representatives from Texas Right to Life, a pro-life nonprofit that backed the family up.
"It should be [that] the family has 100 percent of the control of autonomy of what happens to their family," Darren advocated. "And then, if there is a patient there that is there for 10 days and no one has come to speak up for them, then they'd be a ward of the state."
Families in similar situations began to reach out to the Bravenecs, which gave them more hope. An Arlington family with a comparable case reached out to Darren and shared a positive story. Both families consulted with the same doctor from Ohio.
"When you give any parent one ten-thousandth of a percent their kid can make it, they are going to take it," Darren expressed.
After members of The Avenue Church prayed over Blaire the same day as the brain death test, representatives from the hospital met with the family, and Darren expressed his wishes to continue life-sustaining treatment.
"That bought us a few more days," Darren said.
The first blood flow scan was done on June 21 and the second test was taken on June 29 to see if anything had recovered. The family wished to not know the details and left it up to medical expertise. The results were shared to the Ohio doctor who told Darren, "Your daughter is not dead; she is alive. There is very minimal brain activity, and things are still working."
On June 24, the hospital informed the family that it was time to search for another facility to continue care, and did not rush the family with a deadline or even mention a 10-day minimum. Darren said Children's Hospital staff also helped contact hospitals for them.
But the search for the ideal facility kept Darren from being with his daughter.
After searching for hospitals across the nation, the family consulted with a Louisiana doctor who concluded over a phone-consultation, "Out of the 1,200 plus blood flow studies that he had seen in children, that Blaire's was the worst that he'd ever seen. I don't see the potential of her making a recovery."
Darren explained, "Had that law not been in place and had the autonomy always been with the family, we would have been present with our daughter the entire time being there. We would have realized she died the second night in the hospital whenever her brain herniated."
He continued, "If that law would have been changed, it wouldn't have changed that fact that my daughter had passed away, she would still have. But, it would have allowed us to say goodbye a lot longer."
Darren has been in contact with State Rep. Steve Toth (R-The Woodlands) and will soon connect with Texas Senator Brian Birdwell (R-Granbury) to help draft legislation for the 87th Texas Legislative session in 2021.
The family has seen an overwhelming amount of support from the community and strangers with GoFundMe proceeds exceeding the $20,000 goal by $392. A total of 226 people raised funds in a matter of 20 days.
The Bravenec family has not received its hospital bill and estimates it being over half a million dollars.
Chili's Bar and Grill in Waxahachie will host a Good Eats for a Good Cause that will donate 20 percent of tickets to the Bravenec family. This event will take place on Monday from 11 a.m. — 11 p.m. The Chili's is located at 998 W. U.S. Highway 287 Bypass in Waxahachie.
The Bravenec family invites the entire community to the viewing that will be held on Sunday at the Wayne-Boze Funeral Home in Waxahachie from 7 — 10 p.m. followed by a memorial service for Blaire on Monday at 11 a.m. at The Avenue Church. In Lieu of flowers, the family requests donations be made to her family so they can make a contribution on Blaire's behalf to Children's Medical Center.
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Ashley Ford | @aford_news | 469-517-1450