Crooning a lullaby to a tired child is one of the simplest and most basic joys of motherhood, one that most moms don’t even think about. But it was something that Jennifer Root was unable to do for her three children — not because she couldn’t sing, but because they all were born profoundly deaf.
But thanks to a miracle of medical technology, Root’s two daughters, Grace, 8, and Evelyn, 6, and her son, Mark, 1, can now hear her sing and tell them how precious they are to her. In October, all three children got cochlear implants on the same day.
Just a few days ago, the devices were turned on. And on Friday, Jennifer Root, her husband, Ryan, and their three children were all in New York, where they told TODAY’s Ann Curry about how the gift of hearing has changed their lives.
“I never really sang my children to sleep,” Jennifer Root had told NBC News’ Miguel Almaguer when the children were getting ready for the surgeries, which were performed Oct. 27 at the House Ear Institute of Los Angeles. “It goes from communicating very little with your child to communicating normally, like everyone else would. So it’s a huge change,” she added.
For Grace and Evelyn, who each had one implant and in October got a second so they finally have stereo hearing, it has been an evolutionary change. For infant Mark, who got two implants, it is an adventure into a new world of sensation that he is just beginning.
“It has been a whirlwind for us. We just got back from Los Angeles to get their external equipment, and we flew out here to New York four days later,” Jennifer Root told Curry.
“In the meantime, we’re trying to adjust to sound,” she said, referring to Mark. “That’s a big adjustment coming from no sound to some sound. It’s been difficult.”
A new world of sound
Five years ago, when Grace got her first implant at the age of 3, her mother said the first words that the girl remembers hearing.
“She said ‘Grace,’ ” the 8-year-old told Almaguer as her mother beamed.
Indeed, the volume on Mark’s implants is still turned down low so that he can get used to the new sensation of sound. As his brain learns to sort out the noise, the family will turn up the volume and begin to teach him to speak.
“The sound is not turned up really high right now because that would be too shocking, so it’s not quite up to the level of speech and all the regular noise that we hear,” Jennifer Root said of her son. “He is just getting the sensation of noise and the sensation of hearing. His brain is getting used to it.”
Jennifer knew before her children were born that they might be deaf. She herself was born deaf in one ear, the result of a hereditary condition called Waardenburg syndrome. The gene that causes the syndrome is dominant, and Jennifer knew there was a 50-50 chance that each of her children would be born with the disorder. In addition to partial or complete deafness, Waardenburg syndrome is also sometimes characterized by partial albinism and coloration abnormalities. Video: Web only: Experts on Roots’ hearing progress
Jennifer has a brother and sister who carry the gene, but their children were all born without the syndrome. All three of Jennifer’s children were born profoundly deaf.
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Luckily for the Roots, the children were all eligible for cochlear implants through California’s Medi-Cal system. Unlike a hearing aid, which merely amplifies sounds, cochlear implants directly stimulate the auditory nerves in the inner ear. According to the Food and Drug Administration, more than 25,000 children and 41,000 adults in the U.S. had received cochlear implants as of April 2009.
Grace, the eldest daughter, was the first to get an implant at the age of 3. Evelyn got her first at the age of 1. Now, all three children have two implants each.
Although the implants allow the children to hear, they are still impaired. On a scale of 1 to 25, their doctors say, their hearing is 25 — the lowest end of the scale.
Also, when they go swimming or bathe, they have to take off the external hardware that allows them to hear and they become deaf again. And, Grace told Ann, if she doesn’t want to listen to anyone, “I have this coil. If I take it off, I can’t hear anything.” She seemed pleased with that power.
“There’s a lot of follow-up appointments and a lot of long trips for us, so having them all coordinated is a big advantage. It was very practical,” Ryan said.
The father said he’s looking forward to when Mark gets the hang of hearing and talking and interacting with his siblings and parents.
“To be able to just say, ‘Hey, catch the ball,’ or whatever is obviously very important,” Ryan said. “Just the ability to communicate.”
For more information about cochlear implants and the House Ear Institute and their efforts to advance hearing science, click here.
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