Baby girl born will need surgery every six months until she is 18

Baby girl born will need surgery every six months until she is 18

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 (TCS), 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.

Zoey’s mother Megan, 27, who also has TCS, said: ‘Despite her problems, she’s an angel. Zoey is my little fighter, even at such a young age, she is incredibly resilient and has changed my life.

‘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.

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Zoey Tidwell, eight months, was born with several rare syndromes 'never seen in one patient'

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Zoey Tidwell, eight months, was born with several rare syndromes ‘never seen in one patient’

Her mother Megan (pictured), 27, says 'despite her problems, she's an angel' and a 'fighter'

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Her mother Megan (pictured), 27, says ‘despite her problems, she’s an angel’ and a ‘fighter’

Zoey, who is missing bones around her eyes, needs surgery every six months until she is 18

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Zoey, who is missing bones around her eyes, needs surgery every six months until she is 18

WHAT IS TREACHER COLLINS SYNDROME? 

Treacher Collins Syndrome (TCS) affects the development of bones and other tissues in a sufferer’s face.

It affects around one in 50,000 people to some extent but is not always noticeable.

TCS is caused by an inherited genetic mutation.  

Although symptoms vary in severity, most sufferers have underdeveloped cheek bones, and a small jaw and chin.

Some also have a cleft palate.

In severe cases, a sufferer’s airways may be restricted, affecting their breathing.

TCS does not usually affect a patient’s intelligence.

Treatment may include facial reconstruction and managing a patient’s airways.

Source: US National Library of Medicine 

‘A one-time occurrence’ 

Single-mother Megan, who works part time, said: ‘Zoey is the only patient to have all these conditions together, from their studies no other child has all the same syndromes.’

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.’ 

Baby girl suffers from several ultra-rare syndromes

 
 
 
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Zoey suffers with undergrown facial bones, a large cleft palate and breathing difficulties

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Zoey suffers with undergrown facial bones, a large cleft palate and breathing difficulties

She inherited one condition from her mother, who has to take Zoey to hospital once a week

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She inherited one condition from her mother, who has to take Zoey to hospital once a week

Zoey had her first operation at five months, and requires more to be able to eat and speak

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Zoey had her first operation at five months, and requires more to be able to eat and speak

‘Her lip fell apart’ 

 

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.’

Her cleft palate reopened despite having surgery three months ago as the case is so extreme

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Her cleft palate reopened despite having surgery three months ago as the case is so extreme

Megan says without surgery, Zoey's 'outlook is bleak' and she will have a poor quality of life

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Megan says without surgery, Zoey’s ‘outlook is bleak’ and she will have a poor quality of life

‘Zoey is my little fighter’

Megan said: ‘Despite her problems, she’s an angel and is doing great to get through all of her surgeries so far but realistically will need operations every six months until she’s 18-years-old.

‘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.

‘Zoey is my little fighter, even at such a young age, she is incredibly resilient and has changed my life.’ 

 

 

Megan was initially concerned strangers would treat her daughter differently due to her appearance.

Yet, to her surprise, she has received support from the public and appeals to other parents to raise awareness of the condition and embrace their differences.

Megan said: ‘I was really worried about the reaction from strangers and kids, but they have all been pretty great, I explain to them that this is how God made her.

‘Most people tell me she’s cute when we go out in public, for me it’s important that we try to raise as much awareness as possible as while she is different, she’s just a normal baby.

‘I call her my “little Zoey bug” all the time, she’s just like any other baby she coos, cries and kicks, she’s also hitting all of the major milestones.’

Megan is fundraising to cover the cost of travelling to Zoey’s weekly medical appointments, which are an hour-and-a-half away

She said: ‘Zoey has so many doctors’ appointments that I have to go to every week and need to book off a lot of time to take care of her.

‘Right now, she’s seeing a gastroenterologist, a plastic surgeon, two different paediatricians, a geneticist, a paediatric surgeon, an ophthalmologist, an ear nose and throat doctor, an audiologist and a pulmonologist.

‘They all correlate together as her craniofacial team, she has to see each of them at different times, so it can be difficult to coordinate and hold down a job.’

Donate towards Zoey’s fund here.   

 Megan worried strangers would treat Zoey differently, but was surprised by their support

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 Megan worried strangers would treat Zoey differently, but was surprised by their support

Megan wishes to raise awareness of Zoey's conditions and money to fund her hospital visits

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Megan wishes to raise awareness of Zoey’s conditions and money to fund her hospital visits

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