extraordinary people: the girl with a new face
Five’s acclaimed documentary strand comes to the end of another batch of absorbing programmes exploring remarkable stories of human experience. Tonight’s programme follows the incredible story of Marlie Casseus, a Haitian teenager who required pioneering surgery to remove a seven-kilo growth from her face.
In Port-au-Prince, Haiti, 13-year-old Marlie is dying. Because of a rare genetic condition known as fibrous dysplasia, Marlie’s bones are transforming into a huge growth, or lesion, that distorts her face, stretches her skin, crushes her windpipe and forces her eyes apart. “People here say that this is a curse, not a normal disease,” says Marlie’s mother, Maleine. “They say it is voodoo stuff.”
With time running out for their daughter, Marlie’s family contacted two US-based Haitian nurses, sisters Gina and Ginette Eugene, who called on an American charity for help. The International Kids Fund immediately arranged for Marlie to be airlifted to a Miami hospital, two hours away, where the world’s media was waiting for a press conference addressed by one of the few specialists who could save Marlie: Venezuelan-born maxillofacial surgeon Dr Jesús Gómez.
Marlie’s case of fibrous dysplasia is the most extreme in medical history: her seven-kilo lesion weighs more than her head and she has to support it with her hands. She is also in constant pain and in danger of going blind. Dr Gómez’s only hope of saving his young patient’s life is to remove the whole lesion in a pioneering, but lifethreatening operation, and insert synthetic bones. “Nobody has attempted to do a surgery that is this big in a patient this young,” Dr Gómez explains. The operation is costing $95,000 – money raised by the International Kids Fund.
At 7.30am on the day of the operation, the surgeons and family know that this will be the turning point in Marlie’s life. Dr Gómez is aware that the procedure could either change or end Marlie’s life – there are great risks from bleeding and infection. As the operation gets underway, Dr Gómez and the team remove huge parts of the mid-section of Marlie’s face and, incredibly, manage to reconstruct her nose. At the end of the 17-hour procedure, Marlie has 2,500 stitches in her face – but she can now hold her head up, and wants to see herself in a mirror for the first time in five years.
Six weeks later, Marlie is free from pain for the first time in years, and can even smile. Dr Gómez is confident that she will eventually look “pretty close to normal”, because he knows she will put in the necessary effort. “We gave her a new chance,” he says proudly. “We gave her hope.” However, Marlie’s ordeal is by no means over. She must now endure another operation to remove the lower part of the lesion and replace it with an artificial, titanium jaw. After the diseased parts are cut away, carefully avoiding damaging the delicate nerves of the mouth and tongue, the new jaw is screwed into place.
After a few weeks’ healing, Marlie is looking forward to being reunited with her father and sisters, who are coming over from Haiti to see her. “I lost Marlie, but now I have her back,” says her father, Michel. “Marlie was dying, but now she is dancing.” The family return to Haiti, where Marlie recieves VIP treatment from the community that had previously shunned her.
One year later, Marlie can pass unnoticed in a crowd. She still faces more reconstructive surgery, as well as physio and speech therapy, but her face has healed, she has gained weight and, after another operation, she can speak again. “Since everyone is so kind to me now, and my face looks nice,” she says, “I no longer feel like I want to die. Now I can have hope.”