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How surgery changed the life of this little girl from Oudtshoorn whose enlarged tongue couldn't fit in her mouth

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Little Arabella Leeuw of Oudtshoorn is able to smile properly for the first time after her enlarged tongue was reduced in an operation. (PHOTO: ER Lombard)
Little Arabella Leeuw of Oudtshoorn is able to smile properly for the first time after her enlarged tongue was reduced in an operation. (PHOTO: ER Lombard)

Three-year-olds love to talk. Ask any parent and they’ll tell you it’s chatter, chatter, chatter from the moment they open their eyes to the second they go to sleep.

It’s enough to drive you around the bend sometimes – but one family can’t get enough.

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Each word their little girl speaks is music to her parents’ ears, a sign that she’s well on her way to becoming like millions of other kids out there: a nonstop chatterbox.

Arabella Leeuw of Oudtshoorn in the Western Cape was born with an enlarged tongue that protruded from her mouth and made swallowing, breathing and talking difficult.

But thanks to recent surgery, little Arabella has a chance to be like any other kid, and doctors have told her parents there’s no reason she won’t have a normal, healthy life.

Blue stitches criss-crossing her tongue are a temporary reminder of the operation that’s given her a smaller tongue and her parents, Tamson and Jason, are delighted with the outcome.

“She now has a tongue like her brother’s,” Tamson says.

The surgery was performed in Pretoria and the first thing Arabella said when she came round afterwards was, “I want sweets.”

That’s when he wept, Jason says. “It was hard on me as a dad seeing her in pain and struggling from birth.”

Big brother Jason Jnr (6) was overjoyed when he saw his sister’s “new” tongue.

“When he saw her the first time after the op, he shouted, ‘Look, her tongue is in her mouth!’” Tamson recalls with a chuckle.

Arabella Leeuw, tongue, operation
When Jason saw his sister after the op he shouted, ‘Look, her tongue is in her mouth!’ (PHOTO: ER Lombard)

Before the op, Arabella had been a shy, withdrawn child, her mom says, but now she’s far more spontaneous and outgoing.

As if on cue, Arabella bounds into the living room, holding a peeled naartjie in her hand.

“Ouma did it!” she says, laughing delightedly.

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Arabella was born with the umbilical cord wrapped around her neck and needed to be revived with CPR.

“When we saw her tongue outside her mouth, we thought it was because she’d been strangled by the cord,” Tamson says.

“But the tongue stayed large and hard and when things hadn’t improved by seven weeks, we knew something was seriously wrong. She wouldn’t latch when I tried feeding her and we had to feed her milk in a bottle cap. A dummy was also a struggle.”

The months passed and although Arabella grew stronger, her tongue remained large and protruding. Doctors in the area were at a loss and when she was 19 months old she was referred to the Red Cross War Memorial Children’s Hospital in Cape Town.

Arabella Leeuw, tongue, operation
The little girl in hospital in Pretoria before the procedure. (PHOTO: Facebook/Arabella_Leeuw)

She was in and out of hospital while doctors tried to diagnose her and figure out what to do, which meant round trips to Cape Town, nearly five hours’ drive away.

To make matters worse, Jason, who was working as a petrol attendant in St Francis Bay in the Eastern Cape at the time, couldn’t always be there for Arabella’s doctors’ visits.

“I lived in constant terror that something would happen and I wouldn’t be there,” he says.

Jason now works for his father-in-law, July Damons, who sells fruit and vegetables to businesses and residents in the area. Until Arabella’s birth, Tamson was a Grade R teacher but she gave up her job to take care of her daughter.

“At one point, there was talk of doctors amputating her entire tongue,” Tamson says. “There was a huge chance she’d never be able to speak. I put my foot down – I just couldn’t imagine I’d never hear her voice.”

They kept Arabella at home instead of sending her to preschool, Jason says. “You know what kids are like. Her mom wanted to spare her the humiliation.”

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But they were surprised at how protective the few children who had contact with Arabella were.

“It was a grown man who shouted out of his car window, ‘Ha-ha! Look at the tongue. Suck it in!’ ” Tamson recalls.

Arabella Leeuw, tongue, operation
She used to be in a great deal of pain and speaking was a problem, due to her enlarged tongue. (PHOTO: Supplied)

A family friend created a Facebook page for Arabella to create awareness about her condition, for friends and family to follow her progress and in the hope someone somewhere might be able to help.

“The doctors said it was the first time in their careers they’d seen something like this. We wanted to see if we could find someone else in the country who’d experienced something similar to this, so we could get advice,” Tamson says.

The Facebook page did its job. One of Arabella’s first followers was Carine Crystal, mother and manager of singer Nádine.

She was on the lookout for projects to work on with one of her sponsors, payment service provider AE Switch.

Tamson says she was at rock bottom when the singer called to say they wanted to help Arabella financially so she could get the best specialists to treat her.

“I didn’t hesitate for a second – I said ‘yes’.”

Three days later they were on a plane to Gauteng to see a mouth specialist, who referred them to Dr Hermann W Kluge, a maxillofacial and oral surgeon in Pretoria.

His words filled the couple with relief and joy.

“He said, ‘Mommy, don’t be so worried’,” Tamson says. “‘We can do something. We can fix her’.”

Kluge diagnosed Arabella with lymphatic vascular malformation, a type of benign growth that can occur prenatally, mostly around the head and neck area.

In Arabella’s case, the growth had integrated itself with her tongue and needed to be removed without damaging the large veins in the tongue.

The tongue also needed to be reduced in size without damaging her ability to taste.

The operation in June in Pretoria’s Cintocare hospital lasted 90 minutes and was a huge success.

Arabella, who before the op had endured many painful viral infections in her tongue, didn’t complain once about pain after the surgery.

“Though it was painful, it was a relief compared to what she’d been through before. She was used to pain,” Tamson says.

Arabella Leeuw, tongue, operation
Three- year-old Arabella with dad Jason, mom Tamson, singer Nádine – who helped sponsor the operation – and brother Jason Jnr. (PHOTO: Facebook/Arabella_Leeuw)

The toddler had to learn to speak again with her “new” tongue and is getting help from a Pretoria speech therapist via video call.

Arabella is proud of her progress.

“I like eating,” she says loudly and clearly, her head pressed against her mom’s cheek. “I love rice.”

Every word from her daughter’s mouth brings joy to Tamson’s heart.

“I’m happy Arabella can now speak up for herself with confidence, that she can tell her own story and be sure people understand her.”

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