Facebook removes smiling picture of seriously ill girl being fed by a tube

A mom was left horrified when Facebook banned a photo of her daughter because she was being fed by a tube.

Shai Winn, nine, has spent her whole life being fed by a tube after she was born with a rare condition.

Shai, who was born prematurely at 31 weeks, had a "V-shaped pocket" at the back of her throat - known as laryngeal cleft.

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The cleft means she has a hole between her voice box and food pipe - which means food or drink can pass into her airway.

Mom Lindsey Bidwill, 40, started a charity to raise awareness of the condition.

But when she went to upload a photo of Shai smiling with her food tube, to the charity's Facebook page, Shai's Smile, she was told it was " shocking, sensational or excessively violent".

The 40-year-old immediately appealed the decision - which was rectified about within 10 minutes, Facebook told The Sun.

'It's absolutely shocking'

She said: "I was just shocked.

"Even if it was a robot it is just not on.

"Some of the stuff on Facebook is absolutely shocking so I couldn't believe they didn't let me post a picture of my daughter."

Lindsey said she didn't tell Shai what had happened, adding "she would have been really upset".

Rare condition means drinking water could kill her

Shai's condition is so unique that doctors have put her forward for genetic testing.

As well as her laryngeal cleft, Shai suffers a host of other health problems that mean even brushing her teeth, going swimming and drinking water could prove fatal.

She suffers aspiration pneumonia, where you inhale food, stomach acid or saliva into the lungs, as well as oesophageal dysmobility, a spasm-type pain when swallowing, and gastroparesis or stomach paralysis.

Shai spends 17 hours a day hooked up to a machine which feeds her.

This can interfere with Shai's schooling and means she's not able to have sleepovers at her friends' houses.

Shai also can't go out with her school friends at lunch and has to spend her time playing inside on a laptop.

Lindsey said: "She's been really down lately.

"She's got one friend called Finley who also gets fed by a tube and they're really a lifeline for each other.

"She said 'Mommy I only feel normal when I'm with Finley."

Hope for Shai

Shai is having a surgery later this year to try and fix her laryngeal cleft but even if the risky operation goes well, she'll still need to be fed by tube.

The rest of Shai's family sometimes struggle but they are all very protective of her and "worship the ground she walks on".

Her two older brothers, Reef and Samuel, and her older sister, Elaine, all pitch in to look after Shai but Lindsey says it sometimes means they miss out on family outings.

Her father, Richard, finds it hard that he has to work to pay the bills but misses out on spending time with Shai.

Lindsey said: "Shai wanted Daddy to come with her to hospital.

"My husband has to pay the bills and it's hard because she wants Daddy to be there but he can't."

Lindsey now works part-time for Little Urchins Photography and Richard is a self-employed carpenter.

Shai's Smile has raised £20,000 ($26,336) which Lindsey wants to put toward a party for other "tubies" - the term used for people who are fed by tube.

Lindsey says the "tubie world" is a lonely one and she wants to create a party which doesn't revolve around food to let the children connect.
A Facebook spokesperson told The Sun: "Shai's picture was reinstated within less than ten minutes of Ms. Bidwill reporting it to us.

"We know how important it is for families like Shai's to raise awareness of causes that are close to their hearts on Facebook and we wish Shai and her family all the very best with their fundraising efforts."

This story originally appeared in The Sun.