ANDREW WALLACE / TORONTO STAR Yeabsra Hailmarim, 5, spent a day at High Park, playing with Constance McGratten, where she proved to be fearless, leaping off swings and racing up ladders. She did not notice the stares of some other children — and adults.
By: Leslie Scrivener Feature Writer, Published on Fri Apr 29 2011
Six-year-old Yeabsra Hailmarim, wearing Easter chick elastics in her braids and an eager smile, strides to the front desk of the downtown Delta Chelsea Hotel and says: “My name is Yeabsra. How are you?” It is her only English.
If anyone is staring, she doesn’t notice.
She and her mother have arrived from Ethiopia, and up on the 15th floor their room is scattered with welcoming gifts. Yeabsra wraps her arms around the stuffed bunnies, turns the pages of the books and then examines herself in a full-length mirror. Delighted with what she sees — new clothes, a purple track suit and yellow T-shirt — she laughs and hops from side to side. In her homeland they call this being “full of popcorn.”
She does not appear to see in the mirror what most of the world sees: a harsh deformity, the middle of her face flattened and undefined, the space between her eyes too wide and two fleshy horn-like bumps — unprotected portions of her brain — protruding from her forehead.
Yeabsra and her mother have come to Canada for an operation to repair this extremely rare facial cleft, a procedure too complex to be performed in Ethiopia. A small Toronto charity, Transforming Faces Worldwide, has brought them here, while the Herbie Fund is paying hospital costs.
There are risks. Craniofacial surgery will last 10 to 12 hours. Doctors will cut her skull into four or more parts and reassemble it like a puzzle, narrowing the space between her eyes and flattening the roof her mouth, which is now arched in a V. They will use bone grafts to construct a nose. They will be operating near her eyes and brain. Her skin will have to be lifted, folded back and, at the end, delicately replaced.
“When I think about her future, thinking what her life is going to be, I made a decision to come here,” Yeabsra’s mother, Aynalem Adugna, says in Amharic, through a translator. “I love her more than anything. I worry about her more than anything.”
Yeabsra is a spirited child and in good health. Her parents and doctors have weighed risk and reward: an operation that could lead to blindness, loss of the sense of smell and, the rare catastrophe, an air embolism, against the prospect of a life transformed.
Soon, she will be wheeled into Operating Room F at Toronto’s Hospital for Sick Children. Easter is three weeks away.
Yeabsra was born in Yekatit 12 Hospital in Addis Ababa, and for a child with a facial deformity it was a bit of good fortune. The hospital has a plastic and reconstructive surgery unit with a rehabilitation team. Tall, dignified Dr. Mekonen Eshete had just joined it, fresh from plastic surgery residencies in India and Norway. One of 11 plastic surgeons in a country of 78 million, he met the family two days after Yeabsra’s birth. Doctors assured them that one day she could have an operation to correct her face.
For many families the birth of a child with a facial disfigurement is a disaster. In some parts of Ethiopia, especially rural areas, children with congenital abnormalities, including clefts, are considered a curse from God and a punishment to the parents. In some countries these babies are abandoned. Others are hidden and wither away without proper care or nutrition.
“If they have a chance to go out they are often abused by their peers, scorned and laughed at in public gatherings,” Eshete says. “Marriage will be almost impossible. A terrible future awaits.”
The openness and acceptance of Yeabsra’s family is uncommon in Ethiopia, Eshete says. “I think this is the reason why she is a confident and lovely child.”
The family, which now includes a little brother, Abel aged 3, live in a two-room house, with a garden in which they grow vegetables. Gebeyhu Hailmarim, her father, a handsome man who lost a hand and a leg playing with an explosive when he was a child, is unemployed. (He remains at home with Abel.) Adugna had worked in a college cafeteria, but has been laid off.
In kindergarten Yeabsra was in the top quarter of her class. Her teachers said she was very bright. In a graduation photo her school friends are clustered around her, all wearing miniature black gowns and mortar boards.
But when Yeabsra moved to Grade 1 last year, there were the first signs of trouble.
“The class is new and she doesn’t know the other children very well. The kids were looking at her and she was wondering why,” Adugna says.
“When she was in kindergarten she would come home from school and do her homework. Now, she doesn’t write. I noticed this a lot. It’s not the same as it used to be.”
She’s dropped to the bottom third of her class.
Yeabsra’s joy in her appearance — softly rounded cheeks and her playful dark eyes — is changing. Adugna has seen her daughter lightly strike the middle of her face where her nose should be. She’s become aware that people look at her differently, and some of them stare. “It’s because of my nose isn’t it?” Yeabsra has asked her mother. “What happened to me? Did I fall down?”
Adults who have met Yeabsra are smitten by her trusting nature, the way she settles into their arms or reaches for their hand and her sweet singing voice. “She wants to be part of everything,” says Jeanne Mott, a Toronto caterer who invited Yeabsra and her mom to stay with her in her house near O’Connor Drive and Coxwell. She’s 63, a grandmother of five and learned about the family through Transforming Faces’s email string of friends. “She wants to be right close to you, to make body contact.”
The first weeks prove to be lonely. Accommodation arranged with Ethiopian families in Toronto fell through so Adugna and Yeabsra stay at the Delta Chelsea — which isn’t charging for the room — for nearly two weeks before joining Mott.
This weighs heavily on the 31-year-old mother. At St. Mary Ethiopian Orthodox Cathedral on Tycos Drive, the worry that she has been wearing like a shroud spills out. Adugna weeps as her daughter, dressed in a fancy pink dress, is led to the front of the church as part of a plea for an Ethiopian family to take them in. Yeabsra is overcome and runs back to her mother. The two cling to each other.
Women around them are crying, and the presiding bishop wipes his eyes. There is incense, gleaming gold icons, a congregation wearing gauzy white shawls and soothing, dreamlike hymns — an atmosphere that encourages emotion. One of the supplications seems written for them: “Ye who have conquered the world by patience, pray for us day and night.” There are thanks to Transforming Faces for helping a child from so far away.
Parishioners go downstairs after the service to a community room and drink clove-steeped tea in Styrofoam cups and share samosas. Several come to Adugna and press bundles of $20 bills into her hand then slip away, wordlessly.
Yeabsra and her classmates have reached the stage where they are more likely to demand explanations for differences, says Farah Sheikh, a Sick Kids social worker.
“Kids could be asking their parents what happened to her or they could be asking her and she may not have an answer,” Sheikh says. “For kids with facial differences the best thing is to be truthful. Even simple answers — ‘This is how I was born’ are helpful. The worst thing is when people stare and laugh at you and you don’t know what to say. What you could say is, ‘I don’t really want to talk about it. But let’s go play with blocks.’”
Since this is the first time it has brought a child to Canada for surgery, the staff of three at Transforming Faces Worldwide are devotedly looking after Yeabsra and her mom. One day, executive director Esteban Lasso takes her to High Park with Daniela Lasso-Neufejdt, his daughter, and Constance McGratten, his partner’s daughter. Yeabsra is curious and fearless. She leaps off the swing while it is still high in the air. She races up the ladders and across the platforms in the park’s castle playground.
She doesn’t seem to notice the few children who pull at their faces, mimicking hers, and who call to their friends to come and look. Nor does she see the staring adults who should know better. But Daniela sees them. “The kids are staring at Yeabsra,” she tells her dad. “It makes me mad.”
Yeabsra’s facial cleft is extremely rare, occurring in one in 200,000 or even 300,000, and is hardly ever seen in Canada. Cleft problems are more common in the developing world, but repair is often regarded as cosmetic and not a high priority, even though it affects a child’s ability to speak and hear properly, to breast feed, and in later life lead to a range of psychological problems.
Yeabsra is on a cusp. Eshete believes the self-assuredness that radiates from her now as a 6-year-old will be gone within a year if she does not get surgery.
Dr. Christopher R. Forrest, the chief of plastic surgery at Sick Kids, first meets Yeabsra and her mom two weeks before her skull will be rebuilt. He is clear about the risks and says this is the optimum time for the operation, although it may not make her look entirely “normal.” When babies have facial bipartition surgeries, the rate of subsequent failure is much higher. If you wait until a child is old enough to consent, the operation becomes more complicated.
The French plastic surgeon Paul Tessier performed the first facial bipartitions in the 1970s. His surgeries were miraculous, considering CT scans, revealing bone and tissue, did not exist.
It had long been believed it was impossible to cut the bones of a face and rotate them to create a more harmonious visage. “He proved them wrong,” says Forrest, noting that Tessier’s signature phrase was “Pourquoi pas?” — why not?
The hospital’s modeling department makes replicas of Yeabsra’s skull. Dr. Brooke French, a surgical fellow, practises the cuts with Forrest, using a small reciprocating saw, commonly used in woodworking. They plan to temporarily remove about one-quarter of her skull.
The Thursday before surgery, Forrest asks Yeabsra if she understands that he is going to operate on her. Her hair ties that day are the colours of the Ethiopian flag — green, yellow and red. She is busy playing with a toy cellphone. “Hello?” she says, adorably. “Hello?”
“I need to talk to you,” Forrest says patiently. “How many fingers do you see,” he asks, holding up his hand. “One!” she responds triumphantly, in English.
“I’m going to ask you that same question after the operation,” he tells her. It would be a way of testing her vision.
“Do you have any questions?” he asks.
“You will correct my nose properly?” she says.
“I will do the best I can.”
“Thank you,” she replies.
Yeabsra is led from the room by Shaindy Alexander, the “child life specialist” who has been preparing the girl for the operation: she’s attentive to her fears; they play with dolls and hook them up to IVs.
Adugna stays. Forrest holds the model skull marked with lines to show how he would cut through Yeabsra’s forehead, around her eyes, how thin metal plates and screws would be affixed to close the gaps. Adugna asks if Yeabsra will be able to grow hair. The answer is yes. What about her teeth? She might need braces.
Then, Forrest says, comes the hardest part. There is a sharp intake of breath from the hospital team and others listening. What could be harder than remaking a skull?
Constructing her nose will be the hardest thing, he says, because there is so little tissue to work with.
“OK, I understand,” Adugna says. Her voice is breaking. “As much as possible, doctor, just help us.
“For you and also for myself, I pray.”
On the weekend, Forrest goes back to the hospital and rethinks his plan. He reworks the model. He will now flip the forehead portion of Yeabsra’s skull 180 degrees, so the holes at the front of her forehead would be at the top. It would offer more protection to the brain.
Using some of his son’s Plasticine he fashions a model of a nose. With tinfoil, he makes a template — so he knows how much skin is needed to cover it.
By 9:30 a.m. French exposes the upper palate — which didn’t have much of a cleft. Instead the cleft starts in her gums and splits in a Y shape to the two sides of the face and from her nose to her forehead.
They now make an incision around her forehead, from ear to ear, using an instrument known as a surgical elevator to delicately elevate or fold back the tender tissue and skin of the face, so they can begin cutting the bone. A nurse with 36 years experience observes that this is how face lifts were done in the old days.
It’s an extraordinary scene, the child’s face vulnerable and exposed, the contours defined by layers of raw tissue, instead of familiar, warm, pliable skin. But still, she looks as if she is peacefully asleep. The surgeons are cheerful, engaged in their art, murmuring among themselves, even inviting a writer to look closer. As the neurosurgeon, Dr. Abhaya Kulkarni, arrives — he will make delicate cuts around her brain — visitors are asked to leave.
The operation continues until 8 p.m., nearly 12 hours. Forty years ago a similar operation took 24 hours.
The doctors have rotated her forehead, severed it in two parts and cut away the holes, the pieces wired and plated together with titanium so that the brain is protected. It’s an ingenious solution.
They took a 5-centimetre square piece of her skull to use for bone grafts, to reconstruct the areas around her eye sockets, cheekbones and to create her nose.
But they were not able to construct the tip of her nose. Measurements to create the nose could not reliably be made because of swelling around the face.
Forrest hopes to let Yeabsra recover and return in two weeks so he can finish the surgery’s hardest part.
Yeabsra stays sedated on a morphine drip for three days. Doctors and nurses watch closely for signs of infection.
By Friday evening, Yeabsra is sitting up, talking to her mom and sipping tea from a Bunnykins mug. The swelling around her eyes is abating and she recognizes Dr. Forrest. She continues to receive some pain medication, but not around the clock.
“My hope is that afterward, she’ll still be a beautiful little child,” Forrest says.
Still. Yeabsra was always beautiful.
Toronto is home to a small charity, Transforming Faces Worldwide, which helps children with cleft lips and palates.
Funded by a private foundation (whose donors are anonymous) it has an annual budget of $800,000 to fund and train medical teams in nine countries. Its goal is to help children in their homelands, not to fly western specialists in and out.
Corrective surgery costs surprisingly little: $348 on average, yet transforms a child’s life. After surgery care is just as important — orthodontic work, speech therapy and counseling.
Transforming Faces recently set up a small fund to pay for transport and accommodation for complex surgeries. Yeabsra was the first to benefit. Her visit will cost about $7,500.
Hospital costs are paid for by the Herbie Fund. Doctors at Sick Kids waived their fees.
For more information: www.transformingfaces.org or 416-222-6581