Mom says surgery quelled autistic son’s screams
MADISON, Wis. — A mother who couldn’t find ways to quell her son’s incessant screaming said a surgery performed by a University of Wisconsin Health doctor finally helped.
Vicki Hanegraaf said her 16-year-old son Kade, who is autistic, would scream louder than a lawn mower more than 1,000 times a day for more than three years. Kade’s twin brother, Kyle, also has autism and was sensitive to the noise.
“It was absolutely horrific,” Hanegraaf, of Appleton, said in a statement released by the hospital. “We couldn’t go anywhere.”
The family sought help from a behavioral specialist, psychiatrist and a neurologist, who diagnosed him with Tourette’s syndrome and prescribed an antipsychotic drug. But nothing worked.
Hanegraaf then found an article that suggested using Botox to paralyze the vocal cord, leading the family to the American Family Children’s Hospital in Madison where Kade was treated with Botox. It partially worked, and then Dr. Seth Dailey, a UW Health surgeon and ear, nose and throat doctor, then suggested surgery.
“If you spent five minutes with him before he was fixed you would want to pull your hair out,” he said by phone Friday. “It was awful.”
Dailey separated the cartilage in Kade’s vocal cords, creating a larger gap for air flow and limiting the sound power. Since the surgery in 2011, Kade has screamed 90 percent less often and at half the volume, according to his mother. He’s also eating and talking more, Dailey said. The surgery is reversible.
Hanegraaf said the fact that her son could no longer produce the loud scream seemed to temper his obsession with making the noise. “He still has a full voice and still makes a lot of noises the way people with autism do, but we can handle him at a restaurant or in public now,” she said.
The surgery was “custom-made” for Kade, and he’s not had any others like it, Dailey said.
“His case is an unusual one,” Dailey said. “I will probably never see another Kade for the rest of my career or I would be surprised if I did.”
He said the surgery can help a voice disorder that strains the larynx muscles called spasmodic dysphonia. It’s rarely used in the United States and more generally done in Japan. The U.S. usually uses Botox to help, but Japanese doctors generally choose the surgery, Dailey said.
Arthur Caplan, medical ethics chief at New York University’s Langone Medical Center, said the case seems disturbing at first but “is ethically defensible.”
“The core reason is it’s reversible” and could benefit the boy by helping him interact with others, Caplan said. “This is freeing a young person with a terrible, dysfunctional inability to stop screaming.”
Dailey, who has a child with autism, reported on Kade’s surgery in the March edition of Journal of Voice. The solution poses no long term problems for the teen, he said.
“It would have unethical for me not to do everything in my power to try to assist this family and come up with rational, well-discussed approach,” Dailey said.