Deaf Toddler Hears For First Time With Device Implanted in Brainstem

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After finding out about ABI, Phil found out which U.S. hospitals where hosting the clinical trials and emailed them all individually to get Alex on the list.

Last August, the family heard that there was an opening in a trial being conducted at the Massachusetts Eye and Ear Infirmary in Boston, under the direction of Dr. Daniel Lee.

"ABI surgery in the child… who cannot get a cochlear implant can result in meaningful sound awareness and speech perception with time, but it takes work," Dr. Lee said.

On Oct. 5, 2013, the Fredericks made their way from their home in Washington Township, Mich., to Boston. Alex's surgery cost hundreds of thousands of dollars, but was paid for by the family's insurance company.

His parents were by Alex's side as a team of doctors from Massachusetts General, Massachusetts Eye and Ear Infirmary, and even Dr. Vittorio Colletti who flew in from Italy, prepped the toddler for surgery. Even as he was wheeled down to the operating room, it was still uncertain whether the implant would even work.

After five and a half hours in the operating room, Alex was taken into intensive care. His head was wrapped in a cap of bandages, under which was a cluster of wire that doctors hoped would allow him to hear. He then went home to recover.

Several weeks after surgery, the big day arrived. Alex and his family returned to Massachusetts Eye and Ear Infirmary in November to have his ABI switched on for the first time. The wires connected the device inside his head to a sound generator controlled from a computer, where a doctor could manipulate the sound level on the device.

Alex's parents decided that they wanted the first sound their son to hear to be his sisters' voices, so after the device was turned on, the girls started talking, but Alex didn't elicit a reaction. Others in the room tried raising the sound level, but still nothing at first.

Then, to everyone's surprise, a doctor in the room slammed her keys into the side of a desk, and Alex turned towards the sound.

"All of the sudden he just looked," Stephanie said. "He stopped everything that he was doing and he looked." "I felt right away, 'oh he definitely heard that,'" Phil added. "I knew, he was completely focused on his toy and then he just-- he looked."

With that little turn of his head, Alex had made the connection to sound for the first time, but it was the first step in a long journey.

Alex and his parents now return to Boston every month where doctors continue to test Alex's hearing response as they fine-tune the electronics inside his skull. But Alex still has to go through the long process of learning what sound actually is and how it has meaning, even meaning as words.

"It takes speech therapy, it takes audiology to continue to tweak the program," Dr. Lee said. "And it takes a lot of commitment on the part of the family, and we are very lucky that our patient has an unbelievably dedicated parents that are going to see this to a successful outcome."

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