Lifestyle & Human Interest

Toddler Struggles To Eat & Talk Due to Unusually Large Tongue Caused by Rare Disorder


When I was young, my parents always urged me to avoid making anything but the most generally positive comments about another person’s appearance. It was wise counsel.

After all, many people harbor secret insecurities about the way they look. It’s far too easy to make an unintentional gaffe.

Plus, a seemingly innocent comment may end up striking a sore spot. Just consider Oklahoma toddler Baker Roth, an adorable 16-month-old whose sweet appearance hides a deadly truth.

According to Inside Edition, Baker’s parents found it utterly adorable that he always seemed to stick his tongue out on ultrasounds when he was in utero. “I always thought it was cute that he had his tongue sticking out in ultrasound scans,” his mother, Farah Roth, said.

“We just thought it was adorable. I even posted about how cute it was.”

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But Baker’s big tongue, which comically splays out of his mouth, proved to be anything but cute. It turned out that the little guy had Beckwith-Wiedemann syndrome.

The U.S. National Library of Medicine’s Genetics Home Reference describes BWS “as an overgrowth syndrome, which means that affected infants are considerably larger than normal (macrosomia) and tend to be taller than their peers during childhood. … In some children with Beckwith-Wiedemann syndrome, specific parts of the body on one side or the other may grow abnormally large, leading to an asymmetric or uneven appearance.”

In Baker’s case, that meant he had a big tongue. But BWS leads to other side effects, too.

One of the most terrible things about the disorder is how it tends to spawn tumors. Some of these end up being benign, but others turn cancerous.

Little Baker ended up with the latter. Doctors diagnosed him with hepatoblastoma, a kind of pediatric liver cancer.

People magazine reported that he needed an operation and surgery at the tender age of 10 months.

The procedure worked — for a little while. As of December, Baker was cancer free.

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But two days prior to Christmas, the Roths got worrisome news: Certain biomarkers that might indicate the presence of cancer had popped up in Baker’s blood.

“Unfortunately we got that phone call you don’t want to get after getting our labs done last week,” Roth said. “We are believing that it could possibly be liver regeneration causing Baker’s tumor marker to go up more than it should.”

Even if Baker’s cancer is truly gone, the little man has a tough row to hoe. He needs to have tongue reduction surgery to facilitate his breathing, as well as abdominal surgery.

“Tongue reduction surgery will allow him to make sounds and communicate, as well as being able to eat more,” Roth told Inside Edition. “He loves food and wants everything everyone else has, so that will be the biggest thing, he will be so excited.”

Still, Roth is not giving up hope, saying, “There is a light at the end of the tunnel. However, we still have a little ways to go. Baker is strong as ever.”

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A graduate of Wheaton College with a degree in literature, Loren also adores language. He has served as assistant editor for Plugged In magazine and copy editor for Wildlife Photographic magazine.
A graduate of Wheaton College with a degree in literature, Loren also adores language. He has served as assistant editor for Plugged In magazine and copy editor for Wildlife Photographic magazine. Most days find him crafting copy for corporate and small-business clients, but he also occasionally indulges in creative writing. His short fiction has appeared in a number of anthologies and magazines. Loren currently lives in south Florida with his wife and three children.
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