Alex Frederick is just 17 months old and hearing impaired but a device, not yet approved in the U.S. for children, is helping to change that.
Alex was born two months prematurely, weighing just four pounds and four ounces at birth.
He spent the first month of his life in the neonatal intensive care unit of St. John Hospital in Detroit. His early arrival brought him into the world facing a host of challenges. Alex failed the hearing test given to all newborns and two months later, he failed the test again.
His father Phil Frederick said that learning that his son was deaf was hard, ABC NEWS reported.
"That was a blow," said Phil Frederick. "The most difficult part for me was that first time… he failed his first hearing test, because I really thought, 'this is going to go fine.' … that was the most, for me personally, most heart-wrenching point."
Alex has two older sisters, Evelyn, 6, and Izabella, 3. Phil was watching one day as Evelyn played with her brother.
"She wanted to get a response from him and something she was doing with a toy… and I was like, 'Well, Evelyn, he can't hear… he might not see what you are trying to hand him,'" Phil said. "She just said, 'no, I don't want that for him'… 'how's he ever going to play with us' or 'how's he ever going to play with anyone?'"
When Alex was 1-year-old, his parents tried for a cochlear implant, a device that uses electrodes to stimulate auditory nerves. The surgery commenced, but was halted in mid-operation when it became evident it would not work due to the irregular structure of the toddler's inner ear. The scar from that failure is still evident behind his right ear.
"There's things that were going to happen in his life that… I wouldn't know how to help him through those situations where he needed help," his father said.
Phil Frederick kept looking for an answer, for some other technology that would help his son hear. In the course this research, he learned about an approach for children that had been pioneered in Italy by Dr. Vittorio Colletti, and it was about to undergo a series of clinical trials in the U.S. to win FDA approval.
The special device is called an Auditory Brainstem Implant (ABI), a small antenna that is implanted on the brainstem so that it can pick up signals from a tiny microphone worn on the ear and relay them back inside as electrical signals that reach the area of the brain associated with interpreting sound.
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.
In August 2013, 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 stayed 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 a long time 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.
Several weeks after surgery, Alex and his family went back 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 said 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.