February 15, 2021 | Viral | No Comments
A boy born with a tongue four times too big for his mouth faces surgery as doctors fight against the clock to stop the ever-growing organ.
Three-year-old Owen suffers from a rare disease called Beckwith-Wiedemann Syndrome (BWS), a condition that affects one in 15,000 babies.
His mum Theresa Thomas wants to help other families by sharing his incredible story.
Doctors first thought Owen’s tongue was “just a little swollen” but further tests revealed that the organ was obstructing the child’s airway.
Owen underwent a lengthy surgery to remove two inches from his tongue so that it didn’t take up his entire mouth cavity.
Despite the surgery, Owen’s tongue continues to grow and doctors are now trying to find a way to slow the growth before it’s too late.
Theresa, 30, from Pennsylvania, US, received the diagnosis for her toddler in 2018, just two weeks after he was born.
“Owen was officially diagnosed at the Children’s Hospital of Philadelphia by their BWS genetics team,” Theresa, who owns a small business, said.
“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.”
Barring a few scans that showed her son was measuring extremely large, Theresa experienced an otherwise normal pregnancy.
Owen was born on 7 February 2018 and weighed just under 12 pounds.
She said: “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 anaemic.
“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 back home but Theresa and her husband were forced to use a breathing apparatus to monitor him at all times – the results of which spurred plastic surgeons into taking action.
The mum said: “In the beginning, I basically didn’t sleep.
“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.”
Following the initial operation, Owen spent 10 days in hospital.
The experience was tough for his parents, who coped in different ways – which caused issues in their marriage.
The future for children battling BWS is uncertain, which has also left Theresa feeling anxious at times.
Theresa said: “The recovery was probably harder on me and my husband Mike than it was for Owen.
“We had very different ways of dealing with it.
“He handled it by acting like everything was fine, which was difficult for me so we had a lot of arguments in the beginning.
“However, over time we grew and learned how to communicate and be there for one another despite the fact that we handled his disease differently.
“I’ve felt helpless at times. You never want to see your child going through pain.
“It’s one of the worst things to witness as a mother, however, I have learned so much about the strength our son possesses.
“It’s truly amazing to see how much he accomplishes every day.
“Once they took Owens breathing tube out he ate like a champ from his bottle and never acted like he was in any pain.
“His stitches took a few weeks to completely dissolve.
“Before the operation, his tongue was always out of his mouth.
“So many times he would stop breathing in his sleep and choke so hard he would vomit.”
To make matters worse, Owen is at risk of developing cancer as a result of his condition.
She said: “BWS is a watch-and-wait syndrome.
“Every child is different and is affected in different ways.
“Owen does have an increased risk of developing cancer so he is screened by ultrasound and blood work every three months.
“His type of BWS (UPD) means his tongue continues to grow.
“This has been something that has been really hard for us to stomach because we see it getting bigger.
“We will meet with his plastic surgeon in the summer to discuss what they feel is the best plan for him.”
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.
“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.”
Theresa uses her personal experiences of BWS to advocate for those not offered the same level of support as her family has received.
The mum 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.