The family of an Oklahoma toddler who was born with an unusually large tongue hopes to raise money for a reduction surgery to aid with his eating and talking.
Baker Roth, who is 16 months old, was born Beckwith-Wiedemann syndrome (BWS), a rare overgrowth disorder. His mother, Farrah Baker, didn’t know there was something wrong until Baker was born.
“I always thought it was cute that he had his tongue sticking out in ultrasound scans, but realistically it was macroglossia caused by BWS,” Roth said. “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.”
When Baker was delivered eight weeks early through an emergency cesarean section, doctors realized something was wrong. His large tongue made it difficult for him to breathe, so he had to have a tracheostomy tube installed. He also needed surgeries to put his intestines and kidneys, which had grown outside of his stomach, back into his body.
BWS also puts Baker at a 90 percent risk of childhood cancer, and in June, a tumor was found on Baker’s liver. He underwent months of chemotherapy and in October went into remission.
Now, his parents are hoping to get him the tongue surgery he needs to make life a little easier.
“Tongue reduction surgery will allow him to make sounds and communicate, as well as being able to eat more,” Roth said. “He loves food and wants everything everyone else has, so that will be the biggest thing, he will be so excited.”
Baker currently can’t speak because of the condition, but his parents say he stayed positive.
“It’s been a wild ride but thinking of everything Baker has been through is amazing, children are so resilient,” Roth said. “Most people just think it’s cute and don’t ask questions, so I just smile and thank them.”
With nearly $2 million in medical debt already, the toddler’s family is hoping to raise money to pay for his tongue surgery.
“I haven’t been able to open the bills to look at anything yet, I’ve been anxiously waiting for the reduction,” Roth added.