By Amanda Stringfellow @amanda_l_s
Scroll down for the full story
Grace Kabelenga had surgery at four years old to correct her facial deformity - but a large section of her skull was removed to prevent infection.
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.
“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 peaks 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.
In May 2015, Grace and her mother travelled to Tygerberg Hospital in Cape Town, South Africa, for a second surgery in which surgeons would reconstruct her skull.
In order to create a new forehead, CT scans were used to construct a 3D model of Grace’s skull.
The model was then sent to a specialist who used a 3D printing technique to create a latticed framework, made of biomaterials, in the shape of Grace’s forehead, for her bone to grow around.
The surgical team, including Dr Salyer working with Dr Frank Graewe of Tygerberg Hospital, delicately separated Grace’s skin from the membrane that sits around the brain.
Once the skin was separated, the new 3D template was implanted above Grace’s brain.
Dr Salyer said: “This is just guidelines for where the skull would like to be.
“The implant is ultimately absorbable and after six months it begins to break down and disappear.
“By that time new bone has started to regenerate and creates a new skull.”
Now, after seven years and two operations, Grace is finally on the way to living a more normal life.
Ngula said: “I’m very happy to see her, she looks beautiful and she has really changed.
“When we get home there’s going to be a big celebration.”
It’s hard to know how long Grace’s skull will take to grow but proud dad Elijah is already looking forward to her being able to play with other children.
Elijah said: “Every day she is still improving. When her immune system is really strong, then we can say now Grace can go out and mingle with any other person.”
The story of Grace and her incredible surgery is featured in the new series of Body Bizarre, Thursday October 8, 9 pm on TLC.