The family of a Kuwaiti child born with a large facial tumor traveled thousands of miles to find treatment.
Noor Nunez, who is nearly a year old, and her family, traveled from Kuwait City to New York City to see if she could obtain treatment for the non-cancerous hemangioma tumor on her face.
Her mother, Ranya Al-Mutairi, told the New York Daily News that when her daughter was born, the tumor was small.
“When she was born it was only a simple scratch,” she said. Doctors in Kuwait told her it would resolve on its own.
Answer to a family’s prayers: Kuwaiti baby gets life-changing surgery in NYC for disfiguring tumorhttps://t.co/WFCsBvMsHs
— New York Daily News (@NYDailyNews) August 25, 2019
However, the tumor kept growing and began to cover her right eye and nose. Al-Mutairi also said the medicine that was given in the past to treat the tumor did not stall the growth.
According to the American Academy of Orthopaedic Surgeons’ website, hemangioma tumors “can occur throughout the body, including in skin, muscle, bone, and internal organs.”
“Most hemangiomas occur on the surface of the skin or just beneath it. They often develop on the face and neck, and can vary greatly in color, shape, and size,” the website says. “Because hemangiomas very rarely become cancerous, most do not require any medical treatment. However, some hemangiomas can be disfiguring, and many people seek a doctor’s care for cosmetic reasons. In most cases of hemangioma, treatment does not involve surgery. Instances when surgery may be necessary include for tumors that are deep in muscle or bone, or for tumors on the skin that cause problems with vision, breathing, or eating.”
Her mother told the Daily News that she had to take special care when looking after Noor.
“I don’t let her crawl,” Al-Mutairi said, worried that the tumor may bleed if injured. “I was afraid, I wouldn’t know where to go if an incident like that happened.”
Her parents then began searching for doctors outside of Kuwait after they weren’t able to find care inside the small Middle Eastern country.
“It just looked awful,” Al-Mutairi said of the tumor.
Surgeon saves baby’s vision https://t.co/jtVmHWZOrc
— WWLP-22News (@WWLP22News) August 23, 2019
“It was stressful,” Noor’s father, Joe Nunez, a cybersecurity officer for a government contractor, told the Daily News about the quest to find a doctor who would treat her.
He added: “We had enough of the runaround.”
Eventually, the family found Dr. Gregory Levitin in New York City.
“I just literally wrapped it up in email and sent that whole email to multiple people,” said Nunez. “With Dr. Levitin actually, he was the only one that, as soon as I sent an email, he would reply back quickly. Some of the other people I would have to wait three to four weeks.”
In July, the family embarked on a 16-hour flight from Kuwait to the United States.
When Noor arrived, Levitin performed a two-and-a-half-hour surgery on the girl at Mount Sinai Hospital on July 24.
According to WWLP, he was able to remove about 80 percent of the tumor from her face.
Even though the tumor was benign, her family told the station that it impeded her vision and would likely cause her to suffer psychologically if left untreated.
“I started crying. It was a huge difference” after the operation, Al-Mutairi told the Daily News. “Plus I was glad she was safe.”
Levitin said that Noor’s case was “extreme,” adding that “there are not many like hers every year.”
He added: “It takes time and laser to improve. I believe by age three it’s going to be fantastic and by age five, before she goes to school, she’s going to look completely normal.”
Brain Tumor ‘Miraculously’ Disappears
Roxli Doss was diagnosed with a brain tumor, known as diffuse intrinsic pontine glioma, or DIPG, 12NewsNow reported.
“It is very rare, but when we see it, it is a devastating disease,” Dr. Virginia Harrod with Dell Children’s Medical Center told the station. “You have decreased ability to swallow, sometimes vision loss, decreased ability to talk, eventually difficulty with breathing.”
Harrod said the girl went through weeks of radiation despite there being no cure for the tumor. Gena and Scott Doss, her parents, were praying for a miracle.
“And we got it,” said Gena after the girl’s tumor apparently disappeared.
“When I first saw Roxli’s MRI scan, it was actually unbelievable,” said Harrod in the report. “The tumor is undetectable on the MRI scan, which is really unusual.”
Doctors cannot explain why the tumor went away.
“At Dell Children’s, Texas Children’s, at Dana-Farber, at Johns Hopkins, and MD Anderson, all agreed it was DIPG,” said Scott.