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​Toddler Born With Enlarged Tongue Has Life-Changing Surgery

​Toddler Born With Enlarged Tongue Has Life-Changing Surgery

He was born with Beckwith-Wiedemann Syndrome (BWS), which is a rare overgrowth disorder that caused his tongue to double in size

Jess Hardiman

Jess Hardiman

A toddler born with an overgrown tongue has received life-changing surgery to help him eat, talk and breathe more easily - with his mum saying he's even been smiling more as a result.

Baker Roth, aged one, was born with Beckwith-Wiedemann Syndrome (BWS), which is a rare overgrowth disorder that caused his tongue to double in size.

In fact, his tongue was so large that it was spotted on pregnancy scans at 27 weeks, when mum Farrah initially thought he was being 'cute' by poking his tongue out at her.

However, doctors spotted the extent to Baker's condition after he was delivered eight weeks early via emergency c-section, explaining he'd need tongue reduction surgery to avoid his jaw becoming deformed.

Baker in hospital.
Caters
Baker before the surgery.
Caters

Mum-of-four Farrah, from Jenks, Oklahoma, said: "I always thought it was cute that he had his tongue sticking out in ultrasound scans, but realistically it was macroglossia caused by BWS.

"Not a lot of doctors are familiar with the syndrome and we just thought it was adorable, I even posted about how cute it was."

Surgeons recently removed half of Baker's tongue, in turn allowing the 19-month-old boy to eat more easily and smile with his teeth.

His parents also hope he'll soon talk for the very first time.

Baker after the sugery.
Caters

Farrah continued: "It shocks me seeing his pictures before as I never thought about how big his tongue used to be.

"I was like 'wow, that's a big tongue', I was so used to it that it never bothered me but looking back it was definitely large.

"He smiles a lot more, it's a different kind smile and good to see his little face light-up, he's beginning to look more like a toddler.

"We are able to let him have larger foods now like crackers or cut-up hamburger, which he puts in his mouth himself.

"People believe he looks so much different to how he did before.

"I'm really happy with the way it's turned out, we are shocked by how much better it is and his tongue looks really good.

"He's relearning how to drink, eat and communicate correctly, so is having to learn everything all over again.

"I'm so ready to hear him talk now, he is currently using language more to communicate and is trying to walk.

"It's been a long time coming, we are teaching him to work his mouth, when he says 'mommy' and 'daddy' it will be the happiest time for us."

Baker at home in the first week after the reduction surgery.
Caters

While Baker's tongue could be seen during his 27-week ultrasound by doctors and his parents, Farrah and Sean, it was only when he was born, weighing 7lb 14oz, that they realised it was more than double the thickness it should be.

It was then revealed via ultrasound scans that he had a hepatoblastoma on his stomach, from where the intestines and kidney had grown outside of his tummy - an ultra rare cancer that affects two in a million people.

Thankfully, after five months of chemotherapy and resection surgery Baker was declared in remission in October.

Farrah said: "I was never afraid that he would die, I took it day by day and went into a different mental mode.

"We were so relieved to find out that Baker was in remission, it was a heavy weight lifted from us, but unfortunately in the back of your head you always fear it can return.

"It will be exciting to explain to him where his scars came from when he gets older, BWS kids seem to be very happy and strong little fighters."

With Baker's cancer battle under control and tongue size reduced, the family are now able to lead a more normal life, with Farrah already able to see huge changes in her son.

They also visited the dentist for the first time, who was able to confirm Baker now has six teeth and another four on the way.

Baker is now going to speech therapy to help him to use his lips to talk and eat.
Caters

Farrah continued: "We have been able to be out in public, he had never been to a store or anything besides the doctors or hospital.

"We were too scared of him getting sick before to take him, but now we can talk to him the park to see my nieces and nephews and more.

"I can see the changes so much, even in pictures now, and while he always smiled before he is able to do it a lot more with his mouth now.

"We are having to baby proof everything as before he couldn't fit anything in his mouth and now, he can."

Farrah and Sean estimate Baker's bills to exceed more than $2 million (£1.5 million), and are currently fundraising to help cover the cost of his treatment.

To donate visit the GoFundMe page here.

Featured Image Credit: Caters

Topics: Baby, News, US News, Surgery