Syrian refugee's baby born with brain outside her skull survives surgery

A five-month-old girl born with her brain growing outside her skull is recovering in a Winnipeg hospital, after lengthy surgery called a "miracle" by her mother a Syrian refugee who settled in the city just over a year ago.

Ebrarhas the neural tube defect encephalocele,which causes all or part of the brain to protrudethrough an opening in the skull.

• CDC fact sheet on encephalocele

"They don't know exactly what it is or where it came from," saidEbrar's mother.Safaa,who spoke to CBC through a translator from her home.

Safaa's husband, whoisfrom Turkey, doesn't have refugee status, and isstaying in Canada with a temporary visa.

They don't want to reveal their last names because they fearfor their family's safety back home in Syria.

"Of course, as a mom I was scared.I don't know what's going to happen next," she said about her baby's condition.

Safaaand her husband have been struggling to care for their baby since her birth. Ebraris fed through a tube and herbrain, covered in skin, had been growing larger by the week.

"It's really hard and it's something out of our control," said Safaa. "I can't do anything for her. It's really hard on a daily basis for me to bathe her and change her. It's a big struggle."

Baby defied all odds

Safaa was six months into her pregnancy when she was told by doctors in Winnipeg that her baby would not likely survive after birth.

"I was depressedand sad and upset," she said.

Doctors suggested she terminate the pregnancy, but she didn't for religious reasons, and has no regrets.

"God gave me this gift and I accept it as it is. I love her toomuch.

"Just hearing her breathe, I just get closer to her and hearing her breathing. It comforts me and makes me feel close to her."

Safaasaid she was alsotold by doctors that even if her baby survived, Ebrar would require high-risk surgery and had a 50/50 chance of surviving.

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But Safaawanted to proceed with the surgery, to giveEbrar a chance at having a healthy, normal life.

"When I touch her hand she grabs it. I talk to her all the time and I'm assuming she can hear me."

After numerous weeks of CTscans, MRIs and appointments with neurosurgeons, Ebrar finally underwent the nine-hour surgeryat the Children's Hospital on Tuesday.

"Thank God the doctor was really very good, and he helped a lot. It feels like a miracle for us," Safaa said.

"It's 95 per cent different. She looks almost normal," the thankful mom said outside the hospital on Tuesday.

Safaa said doctors drained the fluids surrounding her brain and inserted it back inside her skull.

The baby is breathingon her own,but it's unclear how well she is recovering. She's still in intensive care.

"She's under observation right now because she just had surgery, so the risk was in the surgery," Safaa said.

"The surgery was successful for now, but we don't know anything."

Safaasaid doctors are still waiting for results from CT scans and MRIsto determine how the surgery affected her brain, something that may take another two weeks to learn.

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According to the Atlanta-based Centersfor Disease Control and Prevention,some 375 babiesare born each year in the United States with encephalocele. The cause of the defect is not known.

Prognosis hard to predict

The doctors who performed the surgery on Ebrar did not want to be interviewed, but a medical expertin the U.S. said thistype of surgery can be complex, depending on how much of the brain tissue is outside the skull.

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

Proctor said hisclinic is known for treatingchildren withencephaloceleandhis medical teamhasperformedseveral surgeries over the lastfew months.

"The surgeries can vary in complexity from straightforward and simple if all you have to do is close the skin and the skull,to very complex if a lot of the brain is on the outside of the skull, especially if important blood vessels are going out," Proctor said.

"We've treated patients from Texas and Ohio and Utah, and have treated some from international places like Jamaica and Haiti," he said.

Proctor saidit's hard to predict whether babies like Ebrarcan lead a normal life after surgery. He saidin some cases, a childcan have lifelong neurological development problems.

"Seizures can be fairly common in children withencephalocelebecause if the brain hasn't developed normal ...the electrical signals going to the brain may not be normal," Proctorsaid.

"It's the first case I've personally seen from Canada, but I would suggest it's probably not the first case in Canada."

Proctor said it's also emotionally difficult forfamilies affected by this kind of birth defect because the cause is unknown.

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"A lot of times it's not understood," Proctorsaid. "The cases arereasonably dramatic, so they tend to attract attention."

"I don't know this case well enough to give you much input on how this child is going to do, but we're always very measured in suggesting what we're doing is to help preserve or save their life, because there's a tough road ahead sometimes for these kids."

Safaa said she understands there could be more challenges ahead, but hopes her baby will be OK.

She said she's just anxious to bring her home.

"If she didn't have all those machines on her right now, I don't know, I think I would just carry her out right away and take her to the house."

Syrian refugee's baby born with brain outside her skull

7 years ago

Duration 2:35

A five-month-old girl born with her brain growing outside her skull is recovering in a Winnipeg hospital after lengthy surgery being called a "miracle" by her mother a Syrian refugee who settled in the city just over a year ago.