Big-tongued Toddler Has Life Changing Surgery To Help Him Eat, Talk And Breathe
A big-tongued toddler has undergone life changing surgery to help him to eat, talk and breath more easily.
Baker Roth, one, has Beckwith-Wiedemann Syndrome (BWS) – a rare overgrowth disorder that caused his tongue to double in size.
The muscle was so large it could be spotted on pregnancy scans at 27 weeks, with his proud mum Farrah Roth initially thinking it was him acting ‘cute’ by poking his tongue out.
But after being delivered eight-weeks early via emergency c-section the disorder was spotted and the tongue needed tongue reduction surgery to avoid his jaw being deformed by the large muscle, which constantly hung from his mouth.
Surgeons have recently removed half of it, allowing the 19-month-old to eat more easily, smile with his teeth and soon talk for the first time.
Mum-of-four Farrah, from Jenks, Oklahoma, said: “I always thought it was cute that he had his tongue sticking out in ultrasound scans, but realistically it was macroglossia caused by BWS.
“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.
“It shocks me seeing his pictures before as I never thought about how big his tongue used to be.
“I was like ‘wow, that’s a big tongue’, I was so used to it that it never bothered me but looking back it was definitely large.
“He smiles a lot more, it’s a different kind smile and good to see his little face light-up, he’s beginning to look more like a toddler.
“We are able to let him have larger foods now like crackers or cut-up hamburger, which he puts in his mouth himself.
“People believe he looks so much different to how he did before.
“I’m really happy with the way it’s turned out, we are shocked by how much better it is and his tongue looks really good.
“He’s relearning how to drink, eat and communicate correctly, so is having to learn everything all over again.
“I’m so ready to hear him talk now, he is currently using language more to communicate and is trying to walk.
“It’s been a long time coming, we are teaching him to work his mouth, when he says ‘mommy’ and ‘daddy’ it will be the happiest time for us.”
Baker’s larger tongue was unknowingly noticed during his 27-week ultrasound, by parents Farrah and Sean, and doctors.
After being born, weighing 7lb 14oz, Baker’s tongue was noticed to be more than double the thickness.
Ultrasound scans also revealed a hepatoblastoma on his stomach, from where the intestines and kidney had grown outside of his tummy.
The ultra-rare cancer that affects two in a million people, required three surgeries within his first week of life.
After five months of chemotherapy and resection surgery he was declared in remission in October.
Farrah said: “I was never afraid that he would die, I took it day by day and went into a different mental mode.
“We were so relieved to find out that Baker was in remission, it was a heavy weight lifted from us, but unfortunately in the back of your head you always fear it can return.
“It will be exciting to explain to him where his scars came from when he gets older, BWS kids seem to be very happy and strong little fighters.”
Since being told their son was in remission and now after having tongue reduction surgery, they are looking to the future to solve other problems.
Within his first month, aside from battling cancer the baby also needed a trach fitted due to Baker holding his breath in frustration to the point where he would pass out.
They plan to have a cap placed over his trach to help him communicated better – allowing him to make more sounds, with an eventual hope of him having it removed.
But with his cancer battle out the way and tongue sized reduced, the family are now able to lead a more normal life.
It’s anticipated that the recovery from tongue reduction surgery can be up to 90 days, but Farrah is already seeing massive changes in her son.
They recently visited the dentist for the first time, who was able to confirm he currently has six teeth and four more on the way.
Farrah said: “We have been able to be out in public, he had never been to a store or anything besides the doctors or hospital.
“We were too scared of him getting sick before to take him, but now we can talk to him the park to see my nieces and nephews and more.
“I can see the changes so much, even in pictures now, and while he always smiled before he is able to do it a lot more with his mouth now.
“We are having to baby proof everything as before he couldn’t fit anything in his mouth and now, he can.”
The family estimate Baker’s bills to exceed more than $2 million USD and are currently fundraising to cover the cost of his medical bills.
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