Toddler born with a tongue ‘TWICE the size it should be’ undergoes life-changing surgery to help him eat, talk and breathe easier
- Baker Roth’s parents hope the procedure will help him eat and breathe easier
- The 19-month-old was born with the rare Beckwith-Wiedemann syndrome (BWS)
- The condition meant his large tongue could be spotted on pregnancy scans
- His parents initially thought it was Baker acting ‘cute’ by poking his tongue out
A cancer-surviving toddler who was born with an abnormally large tongue has had life-changing surgery to make it smaller.
Baker Roth’s parents hope the procedure will help him eat and breathe easier, and allow him to make sounds so he can eventually talk.
The 19-month-old was born with Beckwith-Wiedemann syndrome (BWS), a rare overgrowth disorder which can affect all parts of the body.
The condition, which affects one in 14,000 births, meant his large tongue, known as macroglossia could be spotted on pregnancy scans at 27 weeks.
His parents, from Jenks in Oklahoma, initially thought it was Baker acting ‘cute’ by poking his tongue out.
Baker Roth’s parents hope the procedure will help him eat and breathe easier, and allow him to make sounds so he can eventually talk (pictured the day before the op)
The 19-month-old was born with Beckwith-Wiedemann syndrome (BWS), a rare overgrowth disorder which can affect all parts of the body (pictured after the op)
His parents, from Jenks in Oklahoma, initially thought it was Baker acting ‘cute’ by poking his tongue out (pictured the 27-week scan)
But after being delivered eight-weeks early via emergency C-section, the disorder was spotted.
It is unclear exactly how big his tongue was before surgery, but his mother Farrah Roth described it as being twice as big as usual.
Ms Roth, who has three other children, said: ‘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.’
Although Baker has not already started to talk, Ms Roth said she is ‘so ready’ to hear his first words.
She said: ‘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.’
It is unclear exactly how big his tongue was before surgery, but his mother Farrah Roth described it as being twice as big as usual (pictured before the op)
Although Baker has not already started to talk, Ms Roth said she is ‘so ready’ to hear his first words (pictured after the surgery)
WHAT IS BECKWITH-WIEDEMANN SYNDROME?
Beckwith-Wiedemann syndrome is a congenital overgrowth disorder, which can affect all parts of the body.
BWS is a rare genetic condition, affecting around one in every 13,700 births worldwide.
The figure is likely to be higher in reality, with mild cases rarely diagnosed.
Typically a child born with BWS will have an enlarged tongue, which can causes breathing, feeding and speaking difficulties, as well as excessive dribbling. It can also cause respiratory problems and result in a protruding lower jaw.
Some children with this condition are born with an opening in the wall of the abdomen (an omphalocele) that allows the abdominal organs to protrude through the belly-button.
Children with the condition are also likely to suffer enlarged abdominal organs, overgrowth of one half of the body, liver tumours and an enlarged heart or heart defects.
Source: National Institutes of Health
Surgeons reportedly said the surgery was needed to avoid his jaw being deformed by the large tongue, which constantly hung from his mouth.
Before the procedure, Ms Roth said: ‘Tongue reduction surgery will allow him to make sound and communicate, as well as being able to eat more.
‘If he pulls his tongue into his mouth there is no room in there, so it’s constantly poking out and stays hanging over his bottom lip.’
Speaking after the procedure, Ms Roth said her son is ‘beginning to look more like a toddler’.
She added: ‘He smiles a lot more, it’s a different kind smile and good to see his little face light-up.
‘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.’
It’s anticipated that the recovery from tongue reduction surgery can be up to 90 days. However, Ms Roth has noticed changes in Baker already.
She said: ‘We have been able to be out in public, he had never been to a store or anything besides the doctors or hospital.
Before the procedure, Ms Roth said: ‘Tongue reduction surgery will allow him to make sound and communicate, as well as being able to eat more’ (pictured before the op)
It’s anticipated that the recovery from tongue reduction surgery can be up to 90 days (it is unclear if this picture was taken after the surgery)
Baker’s larger tongue was unknowingly noticed during his 27-week ultrasound, by doctors, Ms Roth and her partner Sean (pictured after the op)
After being born, weighing 7lb 14oz, Baker’s tongue was noticed to be more than double the thickness (pictured before the op)
‘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.’
Baker’s larger tongue was unknowingly noticed during his 27-week ultrasound, by doctors, Ms Roth and her partner Sean.
After being born, weighing 7lb 14oz, Baker’s tongue was noticed to be more than double the thickness.
Ms Roth 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.’
Ultrasound scans also revealed a hepatoblastoma on his stomach, a rare cancer thought to affect one in 500,000 people.
Ms Roth 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’ (pictured after the procedure)
Baker required three surgeries within his first week of life. After five months of chemotherapy and resection surgery he was declared in remission in October (pictured in hospital)
Ms Roth said: ‘I was never afraid that he would die, I took it day by day and went into a different mental mode’ (pictured in hospital)
Since being told their son was in remission and now after having tongue reduction surgery, Baker’s parents are looking to the future to solve other problems (pictured in hospital before the procedure to make his tongue smaller)
Ms Roth is pictured with Baker and her partner Sean, who is also Baker’s father
Children with BWS are at an increased risk of several types of tumours, according to the National Library of Medicine.
Baker required three surgeries within his first week of life.
After five months of chemotherapy and resection surgery he was declared in remission in October.
Ms Roth 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.’
Ms Roth added: ‘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, Baker’s parents are looking to the future to solve other problems.
Aside from battling cancer, Baker also needed a trach fitted due to obstruction and him purposely holding his breath.
Doctors plan to place a cap over his trach to help him communicate better – allowing him to make more sounds, with an eventual hope of him having it removed.
The family estimate Baker’s bills to exceed more than £1.5million ($2million) and are currently fundraising to cover the cost of his medical bills.
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