Baby boy is born with ‘super tongue’ six times bigger than normal that reaches to below his chin
The rare genetic condition behind a baby's massive 'super tongue'
A BABY boy was born with a ‘super tongue’ so long it dangled bellow his chin due to a rare genetic condition.
Little Lev’s massive tongue – six inches longer than usual – was first spotted in scans when his mum Olena was 32 weeks pregnant.
Though his parents thought his oddly large tongue was cute at first, they became concerned when they learned it could be caused by a potentially deadly rare genetic condition.
Their worry grew when it became clear that their little boy would struggle to feed and eat normally.
His tongue was six times bigger than it should have been for a newborn.
The parents from Odesa, Ukraine, who weren’t fully named in local media reports, sought medical help.
However, they were told the operation to correct Lev’s condition was difficult to perform.
Mum Olena explained: “Our son was born with a large tongue, five, six times larger than the tongue of an ordinary child.
“A geneticist confirmed that the baby had the rare Beckwith-Wiedemann syndrome.”
BABY LEV’S CONDITION
Beckwith-Wiedemann syndrome is an overgrowth disorder that often comes with an increased risk of cancer.
It occurs in about one in every 15,000 births and tends to be caused by chromosomal abnormalities, according to the (GOSH).
One of its hallmarks is an abnormally large tongue, called macroglosia, which can cause difficulties with feeding, speech, development of the teeth and jaws, and increased drooling.
Speech and language therapy from a young age can be helpful, according to GOSH, though some tots may require tongue reduction surgery.
Our son was born with a large tongue, five, six times larger than the tongue of an ordinary child
Olena
Lev’s mum Olena said: “Doctors in Odesa advised us to look for help abroad because in Ukraine there are no surgeons who would have experience helping such children.”
The family were visiting friends in Lviv, western Ukraine when they learned that doctors from the United States were in the city.
“We had thought about going there, and then it turned out that the US was coming to us, so we quickly signed up for an appointment at the Centre,” Olena said.
“We found out that Lviv doctors help children with the most difficult pathologies.”
Doctors at the Centre for Children’s Medicine in Lviv carried out the reduction operation with colleagues from the US when the tot was just over a year old.
What is Beckwith-Wiedemann syndrome?
Beckwith-Wiedemann syndrome rare is a genetic condition that occurs in approximately one in 15,000 births.
According to the , the most common features of the condition include:
- Increased height and weight at birth or in childhood
- Asymmetry of growth, for example, one arm or leg larger than the other – called hemihypertrophy
- Large tongue size – macroglossia
- Low blood sugar in the first few days or weeks of life – called neonatal hypoglycaemia
- Umbilical hernia or other abdominal wall defect, for example where the intestines and sometimes other organs such as the liver remain inside the umbilical cord but outside the abdomen at birth
- Some children with the condition are at risk of Wilms’ tumour of the kidney
Nowadays, the condition is usually diagnosed with a blood test arranged by a paediatrician or clinical geneticist.
Chromosomal abnormalities tend to be the cause – some can be passed down in families, while others can’t.
Treatment will depend on how the syndrome manifests itself but most children with the condition grow up to be healthy adults and don’t need any specialist follow-up in adulthood.
A hospital statement obtained by Newsflash Media read: “Levchikov from Odesa is now one year and three months old.
“When the family heard from the ultrasound doctor that their baby was showing his tongue at 32 weeks of pregnancy, they got emotional.
“But the toddler’s prank didn’t seem cute when the parents heard during a re-examination of a suspected genetic syndrome affecting their baby’s development.”
Lev’s tongue hung out of his mouth from the day he was born, making it “hard for him to even eat like a normal baby,” the statement continued.
“He could only eat from the bottle and later couldn’t eat solid food because it was falling out of his mouth.”
The hospital added: “After consulting with their American colleagues, the jaw-facial surgeons of the Centre decided to perform a difficult surgery for Levchikov.”
LEV’S RECOVERY
The head of the Interregional Centre for the Treatment of Children with Cleft Lips and Palates, Roman Ogonovsky, said: “We have the experience of removing part of the tongue, we have done similar operations before, but on adults.
“We approached the treatment of this patient responsibly, with the team being supported by our American colleagues.”
The doctors said that after the operation, it was the first time in his life that little Lev was able to keep his tongue in his mouth.
Overjoyed Olena said: “Levchik’s life has changed a lot after the surgery.
“My son is learning to drink, eat and communicate, as all children do, because before he had to adapt to the conditions caused by having a big tongue.
“He has to learn all these skills again.”
The hospital said that Lev would need further treatment and rehabilitation.
But luckily for the tot, his mum is a speech therapist.
The hospital said: “His mother is a speech therapist, so our doctors are relaxed for the little patient because they are sure that he will learn to speak well.”
