WHAT’S BEING CLAIMED:
- A toddler born with a genetic disorder termed Beckwith-Wiedmann Syndrome (BWS) needs surgery to lessen the size of his enlarged tongue.
- A typical characteristic of this condition is overgrowth, which is why the toddler has been experiencing difficulties in breathing and eating.
- BWS also caused the toddler to have a case of cancer after birth and a birth defect called omphalocele.
A toddler from Jenks, Oklahoma who was born with a rare condition will need surgery to reduce the size of his abnormally large tongue, according to his mother.
Baker Roth, a 16-month-old boy is born with a genetic disorder called Beckwith-Wiedemann Syndrome or BWS, which is typically characterized by overgrowth. The disorder is so uncommon that it occurs once in 11,000 births.
“The tongue is his biggest challenge at the moment,” says Farrah Roth, 42 and Baker’s mom.
She told Fox News on Thursday that since he was just 6 weeks old, a tracheostomy tube has been inserted since to help him breathe.
“We’ve never heard him cry or speak,” Roth said.
Baker’s BWS diagnosis was unexpected. Although ultrasound scans seemed to show his tongue sticking out of his mouth, Roth and his doctors never regarded it as a sign of the rare disorder.
Roth told The Daily Mail that not a lot of doctors are familiar with the syndrome. She even posted about how cute it was that he had his tongue sticking out in ultrasound images, only to find out that it was ‘macroglossia’ or enlarged tongue caused by BWS.
Aside from breathing difficulties, the toddler also has difficulty eating. He can only consume soft foods like formula through a feeding tube dubbed as Mickey button.
Baker also had surgery shortly after birth to treat omphalocele. This is a birth defect in which an infant’s intestine or other abdominal organs are “outside of the body due to a hole in the belly button,” according to the CDC. In addition, Baker was also diagnosed in June with a childhood cancer called hepatoblastoma. Roth said the cancerous tumor was found in the child’s liver.
Roth added that all of Baker’s diagnoses: cancer, enlarged tongue and a prior case of omphalocele, are all associated with BWS.
Baker’s cancer went into remission in October after several rounds of chemo. Roth told Fox News that he was supposed to undergo a tongue reduction surgery following the remission but was postponed due to the possibility that his hepatoblastoma has returned.
Despite facing a $2 million debt from Baker’s multiple treatments, the mother looks forward to Baker’s reduction surgery.
“I dream of the day of hearing his voice, his cry, and when he’ll be able to eat up all the food he wants,” said Farrah.
Source: Fox News