As a result Grace from Ndola, Zambia, has never been to school and is not allowed to play with other children as she is desperately prone to infections.
Just falling over or being touched in the wrong place could have killed her, as the entire front section of her skull was missing and her brain was completely unprotected under the skin of her forehead.
Now Grace has undergone state of the art surgery in South Africa to have a specially constructed forehead implanted into her skull to encourage the bone to grow. Grace's unique facial condition developed in the womb and her parents Ngula and Elijah desperately sought medical attention upon her birth.
Ngula said: "When she was born she was rushed to a children's hospital. There was so many doctors but they told us they couldn't do anything because it was beyond their ability."
Elijah said: "Grace had a cranio-facial abnormality. The eyes, the nostrils, the mouth they were all far apart.
Grace with her parents |
"The nostrils were actually 13 centimetres apart. The brain was suspended and stuck to the hard palette on her mouth. You could physically see it outside just covered by a thin skin."
Grace's face had been forced apart by an encephalocele, a defect in which part of the brain peeks through an opening in the skull , splitting open her face down the middle.
It destroyed the base of the skull meaning there was a hole in the roof of her mouth through which her brain was hanging.
When Grace was three years old, she and her father Elijah flew to Argentina for her first life-changing surgery.
After six months in hospital being treated by nutritionists to increase her size and strength, Grace was considered ready for the 21-hour surgery which lifted her brain and rebuilt her face.
American surgeon Dr Kenneth Salyer, founder of the World Craniofacial Foundation, who stepped in to help Grace, said: "The reason to operate was to save her life, she couldn't live that way and would not survive long term."
At seven years old, Grace's face had healed, but she still has no bone in her forehead. She wore a padded helmet and her parents had to take continual care as only a thin layer of skin protected her brain.
Culled from UK Mirror
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