Three-year-old boy was born with a tongue that is FOUR TIMES too big

Shafaq News/ A three-year-old boy who was born with a tongue that is four times too big for his mouth is now facing more risky surgeries as doctors fight to stop the ever-growing organ.

Daily Mail published the story of the American boy Owen Thomas, from Pennsylvania who suffers from an extremely rare disease called Beckwith-Wiedemann Syndrome (BWS), a condition that causes overgrowth in different areas of the body, and affects just one in 15,000 babies.

His mother, Theresa Thomas, 30, received the diagnosis for her toddler in 2018, just two weeks after he was born, and the condition put her son's life at serious risk, leaving him unable to breathe before he underwent a lengthy operation to remove two inches from the organ.

At first, doctors said Owen's tongue was 'just a little swollen' but further tests revealed that it was actually obstructing the child's airway, showing that it was four times too big for his mouth.

At night, the toddler would 'stop breathing in his sleep and choke so hard he would vomit' - leaving his parents afraid for his life.

Owen underwent a lengthy surgery to remove two inches of his tongue, eradicating his obstructive sleep apnea and leaving him with an organ that didn't take up his entire mouth cavity.

Unfortunately, it's not a permanent fix, and Owen's tongue continues to grow to this day. Now, doctors are desperately trying to find a way to slow the growth, and operate on the young boy, who is facing procedures to fix jaw issues caused by the condition.

And while Owen is thankfully no longer at immediate risk because of his tongue, his team of doctors has yet to find a permanent treatment for the condition.

'The syndrome was discovered in the 1960s so there is still so much they don't know.'

Barring a few scans that showed her son was measuring extremely large, Theresa experienced an otherwise normal pregnancy.

Owen was born on February 7, 2018 and weighed just less than 12 pounds.

The future for children battling BWS is uncertain - which has caused bouts of anxiety for Theresa, who admits that it has been incredibly difficult for her and her husband Mike to handle.

Despite this major setback, Owen is steps ahead when it comes to his speech, having worked alongside a speech therapist.

Theresa said: 'I always make sure not to treat him any differently than I would our other son Michael, who is six.

'Owens's tongue affects his speech, as well as his eating. He has been in speech therapy very early on, which has helped so much, and also had feeding therapy to help him navigate eating solids.

Theresa uses her personal experiences of BWS to advocate for those not offered the same level of support as her family has received.

The mom also has a blog about Owen and her family's life with the rare disease, as well as co-hosts a podcast.

She added: “My hope for the future is that the standard of care for all BWS children will be universal.”