A 3-year-old boy born with a ‘swollen’ tongue faces another surgery as doctors fight against time to stop the organ from suffocating him.
Owen was only two weeks old when he was diagnosed with Beckwith-Wiedemann Syndrome (BWS), a rare condition that affects 1 in 15,000 babies.
He underwent surgery to remove two inches of his tongue so he could breathe properly but the organ continues to grow.
His mother, Theresa Thomas, said: “Owen was officially diagnosed at the Children’s Hospital of Philadelphia by their BWS genetics team.
“I knew in my heart that this is how Owen was made and that he had BWS but even though I knew it, it didn’t make the official diagnosis any easier. I remember feeling sick to my stomach and I almost vomited at the appointment.
“Before Owen, I had never heard of his syndrome. Even doctors I worked with at the time have never heard of it.
“The syndrome was discovered in the 1960s so there is still so much they don’t know.”
Aside from scans that showed her unborn son was extremely large, Theresa from Philadelphia experienced an otherwise normal pregnancy.
“He was born via C-section because he was so large they had a difficult time controlling my bleeding. My umbilical cord and placenta were also much larger than normal. I wound up losing a lot of blood during delivery and became anemic.
“His tongue was enlarged at birth and they brushed it off and said they thought it was swollen.
“But my nurse told me that I should push the issue and the doctors started to investigate whether he had signs of BWS.”
Owen was allowed to go home but Theresa and her husband had to use a breathing device to monitor him.
“In the beginning, I basically didn’t sleep,” she said. “Luckily, while we waited for him to see plastic surgery, we purchased the owlet sock to monitor his oxygen levels while he slept.
“I am so thankful we bought that little device. It alarmed me a few times telling us he wasn’t getting enough oxygen while he slept.
“It saved his life on multiple occasions.”
After the first surgery, little Owen spent more than a week in the hospital. However, it was not a permanent fix as his tongue continues to grow.
“I always make sure not to treat him any differently than I would our other son Michael, who is six,” Theresa expressed.
“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.
“He drools more than most kids and in the summer we have to try to have him wear a hat when in the sun because his tongue does actually get burnt, but other than that he is doing extremely well.
“He is so far ahead of where he should be. We couldn’t be prouder of him.”
She added: “My hope for the future is that the standard of care for all BWS children will be universal. Right now that standard of care is not the same for all BWS depending on what country you live in.
“Some places such as the UK do not screen BWS children who are in the lowest cancer risk group.
“I also hope that more is discovered about BWS and adulthood and that more and more doctors become more educated in BWS so they know how to help BWS children and their families.”
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