Miracle Christmas Eve Call Meant New Life For Baby With Cancer, Now 7

DIX HILLS, NY — Dix Hills couple Khurram Mehtabdin and Sarah Syed were driving home on Christmas Eve 2019, in silence after learning their newborn daughter Imani, just weeks old, had been diagnosed with an aggressive brain tumor.

Doctors had told her parents — both physicians themselves — Imani likely had only days to live. The couple had already purchased a burial plot, and relatives were gathering to prepare for the possibility of saying goodbye.

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"It was like a scene out of a movie," Syed told Patch. "We left the doctor's office. We were driving home. We had both of our families visiting. They knew what was going on. Everybody just wanted to be around and be there with us."

As the couple pulled onto their street, the family's phone rang. After numerous hospitals had told the family there was nothing more they could do, a physician from St. Jude Children's Research Hospital in Memphis, Tennessee, had reviewed Imani's medical records and believed there was a treatment that could help her.

"We went from the lowest point to the highest point in a matter of minutes," Syed said.

Nearly seven years later, Imani is cancer-free, attending first grade and enjoying gymnastics, swimming and piano lessons. The Dix Hills girl, who celebrated her seventh birthday Nov. 8, is now preparing to participate in New York City's Fifth Avenue Snowflake Illumination Ceremony on Nov. 18, an event supporting St. Jude's mission.

The journey to the milestone began with a series of frightening discoveries shortly after her birth in November 2019.

Syed recalled that Imani initially seemed like a typical newborn, aside from difficulty gaining weight. Within weeks, however, her parents noticed that her eyes appeared to become stuck in a downward position.

An ultrasound revealed fluid building up in her brain, prompting an MRI that uncovered a large tumor. Imani was hospitalized Dec. 15, 2019, and underwent emergency brain surgery the following day.

Doctors removed approximately 40 percent of the tumor, but the remaining cancer was more aggressive than anticipated. Imani was placed on a ventilator, and her parents were told she might have only two weeks to live.

Mehtabdin identified the tumor as a high-grade glioma. Despite their medical backgrounds, the parents found themselves facing a prognosis they struggled to accept.

Determined to exhaust every possibility, they sent Imani's medical records to approximately 15 hospitals and specialized programs, including institutions as far away as California and Switzerland. One after another, they were told nothing could be done until on Christmas Eve, when St. Jude called after completing a clinical trial involving her type of cancer.

The family flew to Memphis on Dec. 30, 2019, where Imani was admitted for approximately three weeks to stabilize her condition. She underwent another emergency procedure to relieve swelling in her brain before beginning experimental chemotherapy around Jan. 20, 2020.

Mehtabdin said one of the earliest signs of hope he received about his daughter's condition came from a photograph hanging in a St. Jude hallway.

"The nurse who was taking care of us was a St. Jude survivor and a former St. Jude patient," Mehtabdin said. "That was one of the moments where you said, 'Wow, I have a possible future with my child.'"

While getting coffee for his wife, he noticed pictures of hospital employees holding photographs of themselves as children undergoing cancer treatment. Among them was Ashley Chittenden, one of Imani's nurses, who had survived childhood cancer at St. Jude before returning to care for other patients.

After two cycles of chemotherapy, scans showed that Imani's remaining tumor had shrunk by approximately 50 percent, making another surgery possible.

The operation was expected to take seven or eight hours, but instead, roughly two hours after it began, the surgeon came to speak with the family to announce he had successfully removed the remaining tumor.

"His exact words to me were, 'I got it all,'" Mehtabdin recalled. "I hysterically started crying and I kissed his hands."

The surgery took place March 6, 2020, the date Mehtabdin identifies as the beginning of Imani's cancer-free life.

She underwent four additional rounds of chemotherapy before the family returned to Long Island in July 2020, landing at Long Island MacArthur Airport during the height of the COVID-19 pandemic.

Today, Imani is the oldest of three children, with a 3-year-old sister and a 5-month-old brother.

"She is like the sassiest child," Syed said. "She has two younger siblings that she loves to boss around. She does gymnastics, swimming, and piano. She's funny. They used to call her the mayor of her school."

Although Imani has remained cancer-free, she continues to experience weakness on the right side of her body, which her father attributed to the lasting effects of her illness and treatment. She receives therapeutic services through school, along with private therapy at home.

"It's a lifelong thing, but she's doing amazing," Mehtabdin said. "We just want to make sure she has every possible resource to make sure she's where she needs to be."

Although she was too young to remember her treatment, her parents have explained to Imani how St. Jude helped save her life.

"She knows that she went through a lot and that St. Jude saved her," Syed said. "For her birthday, she actually said instead of gifts, she wants everyone to donate to St. Jude."

The experience has shaped her parents, who previously lived in Commack before moving to Dix Hills earlier this year. Mehtabdin is chairman of medicine and chief of nephrology at Northwell Health's Peconic Bay Medical Center in Riverhead. Syed is a non-invasive cardiologist at Northwell Health's South Shore University Hospital in Bay Shore.

Both said their daughter's treatment changed how they approach patients and their families.

"I think I'm a better husband, a better father, and a better physician because of St. Jude Children's Research Hospital," Mehtabdin said. "I went to medical school, I did my residency, I did my fellowship, but I learned how to be a doctor and I learned how to be a human when I was at St. Jude Children's Research Hospital."

The family is expected to participate in the Fifth Avenue Snowflake Illumination Ceremony on Nov. 18, at 5 p.m. in Midtown Manhattan. The free celebration, emceed by television personality Paige DeSorbo, will feature Imani and her family alongside another St. Jude patient, 17-year-old Faith of Oklahoma, who is scheduled to help illuminate the 30-foot crystal snowflake.

The ceremony is separate from the inaugural St. Jude Snowflake Ball, a black-tie fundraiser scheduled for Thursday, Dec. 3, at 6 p.m. at The Plaza Hotel in Manhattan. The event will feature a performance by Grammy-winning singer Norah Jones, and Mehtabdin said his family plans to share Imani's story and reunite with Chittenden, the nurse whose own survival offered them hope.

"As emotional as it is to share this story and to kind of relive that time period of what is hell, which is pediatric cancer— I'm okay with it because even if it raises a single penny for the organization that saved our family, that's incredible," he said.