Toddler born with rare birth defect faces lifelong challenges 2 years after risky surgery

A Syrian refugee whose baby was born with her brain growing outside her skull says her child faces lifelong challenges two years after undergoing risky brain surgery.

Ebrar Jaber was born with part of her brain outside of her skull. Her mother says she's an 'angel'

Ebrar, 2, was born with a rare birth defect. She survived surgery in 2017, but will face lifelong challenges growing up. (Warren Kay/CBC)

WARNING: Graphic photos of baby Ebrar before surgery appear below

A Syrian refugee whose baby was born with her brain growing outside her skull says her child faces lifelong challenges two years after undergoing risky brain surgery.

Safaa Jaber calls her daughter, Ebrar, an angel.

"I think she's very strong and patient, and I think she's not human," Jaber said in Arabic through an interpreter from her Winnipeg home this week.

"She's an angel to endure all that suffering that she's been through."

She says Ebrar, 2, is deaf in one ear and will likely suffer developmental delays for the rest of her life. Nevertheless, she feels blessed that her baby is alive and believes Ebrar will get better.

'Two miracles, not just one'

Ebrar was born with encephalocele, a neural tube defect that causes part of the brain to protrude through an opening in the skull.  

Ebrar was born with the neural tube defect encephalocele, which causes part of the brain to protrude through an opening in the skull. (Warren Kay/CBC)

Jaber was told by doctors in Winnipeg that her baby would not likely survive after birth. But she did. 

According to the Centers for Disease Control and Prevention, one in 12,200 babies are born in the United States each year with encephalocele.

It's not clear how many cases are reported in Canada every year. But the Canadian Organization for Rare Disorders believes the number of birth defects is slightly lower in Canada because of the quality of prenatal care in this country.

Ebrar endured a complicated marathon brain surgery at Children's Hospital in June 2017 when she was seven months old.

Jaber says doctors drained the fluids surrounding her brain and inserted it back inside her skull. She had a 50/50 chance of surviving.

And despite all odds, she survived that, too.

"It was two miracles, not just one," Jaber said.

'She won't be able to walk' 

The toddler now has scars along her skull, but Jaber said she she looks healthier now.

Since the surgery, Jaber says, specialists and a physiotherapist regularly monitor Ebrar's progress.

But the toddler, who is currently being tube fed, appears to be facing a long road to recovery. 

The Winnipeg doctors who performed the surgery on Ebrar two years ago did not want to be interviewed at the time but Jaber said doctors told her there would be risks associated with the surgery.

Jaber says doctors recently told her that Ebrar will lose hearing in both ears.

Ebrar, seen here at three months, needed marathon surgery to put her brain back into her skull. (Nelly Gonzalez/CBC)

"The doctors tried several times to check if she can hear or not, but nothing was detected," she said. "But I can feel that she sometimes hears stuff around the house. She jumps when she hears a noise." 

While it's not clear whether Ebrar is aware of her surroundings, Jaber says she knows her daughter can feel her and responds to her touch: "I can see that she sometimes hears and responds to our voices.

"Sometimes I worry — she used to not be able to cough on her own but now she's getting better," she said. "She will be [developmentally] delayed for sure but doctors don't know exactly how much.

"She won't be able to walk."

Surgery risks

The surgery can be very complex, according to a medical expert in the United States.

"If the doctor was suggesting it was risky, then almost certainly there were blood vessels going out and they were afraid about the risk of bleeding and stroke with the operation," said Dr. Mark Proctor, chief of neurosurgery at Boston Children's Hospital.

Proctor said his clinic is known for treating children with encephalocele, and has performed similar procedures on children from all over the world. 

Ebrar, shown in a photo taken before her surgery in 2017, is not expected to be able to walk. (Lyza Sale/CBC)

Proctor had previously told CBC News that it is difficult to predict whether children like Ebrar can lead a normal life after surgery. In some cases, a child can have lifelong neurological development problems, he said.

Jaber says it's been a stressful couple of years. She would like to have more help at home but adds that she doesn't mind caring for Ebrar.

"I don't trust to leave her with anybody," she said. "I have to be with her because I'm the only one who understands her.

"I worry that if somebody else takes care of her, they wouldn't know what she needs or how to help her." 

Jaber came to Canada in 2016 with three other kids as government-sponsored refugees from Syria. Ebrar was born in Winnipeg.

She also cares for her niece, Maryam, who survived a bomb blast in Syria, and is currently getting treatment for severe burns all over her body.

Jaber says her husband, who is from Turkey, came to Winnipeg on a visa that is set to expire soon. She worries about whether her husband will be able to stay in Canada.

But, she says, despite all the struggles and worry she is happy to be in Canada.

Jaber praises doctors and staff at Health Sciences Centre Winnipeg for their support, but says she needs more help to care for her toddler at home.

She is trying to get home care for her daughter, as well as a special adjustable bed since Ebrar spends most of her time lying on her back in a crib.

Jaber says  she knows her baby is different than other kids, but she said that doesn't matter to her.

"I thank God she is still alive," she said. 

"She's not like other children, but she's close."