Cleveland girl at center of court battle over brain tumor treatment dies

August 11, 2018

Cleveland girl at center of court battle over brain tumor treatment dies

CLEVELAND, Ohio – This week, 14-year-old brain tumor patient Zara Ali was to begin receiving court-ordered chemotherapy that her parents didn’t want her to have.

But on Thursday, at UH Rainbow Babies & Children’s Hospital, Zara was removed from a ventilator after an apparent medical complication.

She died that afternoon.

The end of Zara’s short life brings to a close a protracted legal battle that had played out since January, when social workers asked the Cuyahoga County Juvenile Court to force Zara’s parents to start her on a two-drug chemotherapy regimen recommended by Cleveland Clinic doctors.

As The Plain Dealer previously reported, Omar and Rosalind Ali argued that it was their right to make medical decisions for their child, and opted to treat Zara with herbal remedies, including frankincense and turmeric.

The family’s names are pseudonyms; The Plain Dealer agreed not to use their real names in order to gain access to the court proceedings.

In August 2017, Zara had begun experiencing headaches, muscle weakness, weight loss and behavioral changes. She was hospitalized at the Clinic in September, where doctors diagnosed a slow-growing, inoperable brain tumor. The doctors determined that the tumor was causing hydrocephalus, a buildup of cerebrospinal fluid more commonly known as “water on the brain.”

The tumor also had damaged Zara’s optic nerves, leaving her legally blind in her left eye and with only half the vision in her right.

Clinic neurosurgeons installed a drainage tube, or shunt, in Zara’s brain to relieve pressure. A Clinic medical team advocated a yearlong course of chemotherapy to shrink the tumor or to keep it from getting any bigger. Without such treatment, they warned, Zara could go blind and possibly die.

Zara’s parents, citing religious objections to “man-made chemicals” and fearing chemo would sicken or kill their child, refused. Clinic officials reported the case to county social workers.

The parents sought a second opinion at UH. Dr. Duncan Stearns, head of Pediatric Neuro-Oncology at Rainbow, testified that while he would not have involved social workers or the courts, he agreed with the Clinic’s recommended treatment. Chemotherapy was “the standard of care” for the kind of tumor Zara had, Stearns said.

On July 31, 2018, after months of hearings, Juvenile Court Judge Michael Ryan ordered Zara’s parents to bring her to the Clinic or UH to start chemo within 12 days.

But Zara was already on a ventilator by then, a fact of which the court was unaware.

On July 29, Zara’s parents had rushed their unconscious daughter to UH’s emergency room. Her parents said UH doctors told them the shunt had malfunctioned.

UH, citing patient privacy laws, declined to comment about Zara’s death.

“We’re saddened for the family’s loss,” the Clinic said in a statement. “Because of patient privacy, we can’t comment further, nor do we have any knowledge of care she received elsewhere.”

According to the Hydrocephalus Association, an estimated 50 percent of shunts used in pediatric cases fail within two years of placement, requiring surgical repair.

In an email, Judge Ryan called Zara’s death a “horrible tragedy,” writing, “I will keep the family in my prayers as they navigate this difficult process.”

In May, Zara had graduated from 8th grade with a 3.5 grade point average and a certificate for excellence in arts. “I was very proud of her,” Rosalind said.

She spent every night in the hospital with her child. Even when doctors and nurses in the pediatric intensive care unit told her there was no hope for Zara’s recovery, she didn’t want to believe it.

“I couldn’t let go of my daughter,” she said.

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