Oct. 25, 2011— -- Fifteen-month-old Rokaya Mohamed traveled from her home in Egypt to Los Angeles to receive a surgery that doctors had never performed until last Wednesday.
Rokaya was born with two full mouths -- both included an upper and lower jaw. At birth, doctors told Rokaya's parents that their baby wouldn't survive.
But she proved them wrong when she continued to grow and get healthier on the liquid diet her parents fed her.
"The X-rays, the ultrasound didn't show us how her face is going to be," Rokaya's father, Tamer Mohamed, told ABC affiliate, KABC-TV, through an interpreter. "We are going to fight to change her life."
Dr. William Magee III, medical director of international programs in the department of plastic and reconstructive surgery at Children's Hospital Los Angeles, heard of Rokaya's condition. While he and his team have performed facial cleft surgeries on more than 100 children from more than 50 countries, he had never seen a child born with two full formed mouths. It is perhaps the only known case of its kind. Nevertheless, Magee believed he could transform Rokaya's face and, in turn, save her life.
"We spent a lot of time planning the surgery, but we made some final decisions on how to go about it while in the operating room," said Magee III. "The face is made of multiple pieces, so it's like pieces of a puzzle. The cool thing is that we were able to use all those extra pieces in Rokaya's face."
While Rokaya will have to undergo many more surgeries in her life, Magee III said he is confident that the Egyptian team of doctors will be able to successfully take over Rokaya's medical needs.
"We're very well-experienced in terms of bringing in children around the world for these surgeries," said Magee III. "We thought we could do an excellent job and get her home safely. She's done quite well, better than we anticipated."
Rokaya was released from the ICU Monday. She will likely be in the U.S. for another few weeks as she recovers from the surgery. Nonprofits, including Mending Kids International, the Children of War and Operation Smile, an international medical charity committed to healing children's smiles, helped Rokaya's family pay to travel to the U.S. and receive the surgery. Operation Smile was founded by Magee's father, Dr. William Magee Jr. in 1982.
"Every three minutes, a child is born with a cleft and many are born in developing countries to parents facing extreme poverty," said Magee Jr., noting that they founded the charity more than 30 years ago as a family endeavor. "They can't afford surgery for their child, so their child is condemned to live in a world where they are often shunned and ostracized. They often can't eat or speak properly.
"Many children born with clefts don't survive," continued Magee Jr. "After surgery, a child can live their life with dignity. They can grow, speak and become productive members of their communities. And they can finally share their smile with the world."
A cleft is one of the most common defects in the world, with more than 200,000 children born with a cleft lip or palate worldwide each year. Babies born in developing countries are about three times more likely to be born with a facial cleft than those in developed countries.
While it is not totally clear what causes a facial cleft, genetic and environmental factors likely play a role in its formation. The entire face forms in the first trimester of pregnancy and there are 10 genes that have been isolated that prove to have some function in forming a cleft palate. Magee III said perinatal care should be a focus to avoid facial clefts.
"Folic acid has jumped out as something that is extremely important here, along with getting the right water," said Magee.
Pollution and smoke from fires, cooking and tobacco could also contribute to the facial abnormalities.
Magee III said the biggest obstacle doctors face is getting the specialized care to developing nations, so that more children have access to special surgeries and treatment for the condition.
"Rokaya's story represents an extreme example of this kind of dilemma," said Magee III. "We are currently trying to set up training so that hospitals around the world are capable of surgeries for their own children, and they don't have to travel all the way here to get the surgeries they need."