Hayden Coleman, who is almost 2 years old, is very smart for her age and understands what her parents tell her. But the toddler has a hard time communicating with them for one big reason — her overgrown tongue.
“Hayden really won’t talk to us,” Hayden’s mother, Hanna Coleman said. “She uses sign language.”
But that’s not uncommon for someone with Beckwith-Wiedemann syndrome, which is classified as an overgrowth syndrome. The most noticeable feature is a big tongue, or tumors in children.
Her family hopes to correct the problem soon. Hayden and her parents will fly to Missouri to see if she qualifies for a tongue reduction.
Hanna and her husband, Clark Coleman, hope Dr. Jeffrey Marsh, a children’s plastic surgeon in St. Louis, will help their daughter.
Because of the disease, Hayden has about an 8 percent higher risk compared to other children of being diagnosed with benign or malignant tumors. For that reason, she has to be screened every three to four months for possible tumors and cancer.
Beckwith-Wiedemann syndrome affects an estimated 1 in 12,000 newborns worldwide, according to Genetics Home Reference website, which is a service of the U.S. National Library of Medicine. It also is often mistaken for Down syndrome, which affects 1 in 1,000 babies.
Hayden’s family noticed her condition when she was born four weeks early, said Hayden’s grandmother, Teresa Roberts. Weighing 7 pounds, 11 ounces, Hayden’s blood sugar was low. Then the family noticed her tongue was large.
At 4 months old, Hanna Coleman took her daughter to a geneticist, who diagnosed the newborn with the syndrome.
“Right on the spot they diagnosed her all by her features,” Hanna Coleman said. “Also, low blood sugar at birth is a sign. Premature birth is a sign. And creases in her ear is another sign.”
The syndrome can be detected prenatally with an ultrasound, Dr. Roy Rajan of Children’s Healthcare of Atlanta said.
“In some ultrasounds you could see a large tongue, a large head and sometimes a large kidney,” he said. “Genetic testing can be done as well.”
Throughout Hanna’s ultrasounds, the expectant couple noticed Hayden was always sticking her tongue out. But it never crossed their minds it could be a rare disorder.
Hayden becomes sick often since her tongue will not allow her to close her mouth.
The frequent illnesses have led to several trips to emergency rooms where doctors are unfamiliar with the condition.
“I had one doctor tell me, ‘You’ll have to excuse me while I go look this up,’” Hanna Coleman said.
Understanding the disease is rare, the Colemans try to take their daughter only to her pediatrician. But if they must head to a hospital, they stick to Children’s Healthcare at Scottish Rite hospital or Gwinnett Medical Center.
Aside from her condition, Hayden is considered a typical baby.
“Besides speech delay, most children are of normal intelligence,” Rajan said. “But some may feel ostracized because of their tongue.”