A baby girl born with several rare syndromes ‘never seen in one patient’ will need surgery every six months until she is 18 years old.
Eight-month-old Zoey Tidwell, from Saucier in Mississippi, battles an array of complications, including undergrown facial bones, a large cleft palate and breathing difficulties, just to name a few.
Zoey has no bones around her eye sockets, with her jaw also missing chunks of bone, leaving her unable to eat or learn to talk.
The youngster, who suffers from Treacher Collins Syndrome, as well as other conditions, had her first operation at just five months old and requires a tube to feed her directly into her stomach.
Her mother, Megan, 27, who also has TCS, said: “Without the surgeries, her outlook is pretty bleak, and her quality of life will not be great. It’s extremely important that she learns to eat, talk and act like everyone else.”
Megan is speaking out to raise awareness of Zoey’s conditions, as well as to raise money to fund their weekly hospital visits.
Zoey inherited TCS from her mother; however, due to other genetic problems, the youngster’s condition caused her to develop a bilateral cleft lip and palate, which prevents her from feeding and forming words.
She also has micrognathia, which stopped her jaw, chin and ear from developing correctly; as well as Pierre Robin Syndrome that contributes to the obstructions in her airways.
Megan said: “Her geneticist told me this is very, very rare and a one-time occurrence, he’s researched it but hasn’t found any other documented cases like my daughter.
“She has one deleted chromosome and an extra chromosome too, it’s two different chromosomes that the genetic mutation occurred within.
“Due to her chromosome problems, there are certain parts of her face without bones, so she doesn’t have any eye sockets and all the bones in her jaw are missing little chunks.
“She has a bilateral cleft lip and palate, meaning both sides of her face are affected; it was one of the most severe cases doctors have ever seen.
“She has a lot of problems breathing too, her chin is very far back, so she has always struggled, especially at night where she stops breathing for a few seconds at a time.”
Zoey has already had several operations, including fitting a g-tube to help her eat and lip surgery. A g-tube passes food into a patient’s stomach.
She had her first operation on her cleft three months ago, but due to it being such an extreme case, the hole reopened, reverting to its previous state.
Megan said: “Within a few weeks, her lip fell apart, it now looks exactly like it did before the surgery, because the gap is so big around her lip the doctors kind of expected that it could happen.
“As well as surgeons attempting to close her lip, she had to take skin from behind her ears and graft them under her eyes.
“They had to take the graft because otherwise when they closed the lip, it would mean her eyelids wouldn’t be able to shut all the way.”
The Punch News