Syrian refugee's baby born with brain outside her skull survives surgery
WARNING: Graphic photos of baby Ebrar before 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.
Ebrar has the neural tube defect encephalocele, which causes all or part of the brain to protrude through an opening in the skull.
"They don't know exactly what it is or where it came from," said Ebrar's mother. Safaa, who spoke to CBC through a translator from her home.
Safaa's husband, who is from Turkey, doesn't have refugee status, and is staying in Canada with a temporary visa.
They don't want to reveal their last names because they fear for 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.
Safaa and her husband have been struggling to care for their baby since her birth. Ebrar is fed through a tube and her brain, 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 depressed and 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 too much.
"Just hearing her breathe, I just get closer to her and hearing her breathing. It comforts me and makes me feel close to her."
Safaa said she was also told 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 Safaa wanted to proceed with the surgery, to give Ebrar 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 CT scans, MRIs and appointments with neurosurgeons, Ebrar finally underwent the nine-hour surgery at 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 breathing on 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."
Safaa said doctors are still waiting for results from CT scans and MRIs to determine how the surgery affected her brain, something that may take another two weeks to learn.
According to the Atlanta-based Centers for Disease Control and Prevention, some 375 babies are 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 expert in the U.S. said this type 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 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 his medical team has performed several surgeries over the last few 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 said it's hard to predict whether babies like Ebrar can lead a normal life after surgery. He said in some cases, a child can have lifelong neurological development problems.
"Seizures can be fairly common in children with encephalocele because if the brain hasn't developed normal ... the electrical signals going to the brain may not be normal," Proctor said.
"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 for families affected by this kind of birth defect because the cause is unknown.
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"A lot of times it's not understood," Proctor said. "The cases are reasonably 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."