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Video: Medical miracle gives siblings gift of hearing

  1. Closed captioning of: Medical miracle gives siblings gift of hearing

    >>> to the root family in just a moment, but first, nbc's miguel almaguer has their story.

    >> reporter: mark root sees the world like most 1-year-olds. it's what he hears that's different.

    >> more? more?

    >> reporter: his sister's laugh, his father's voice, his mother's call --

    >> you're so funny.

    >> reporter: -- have always been silent. born profoundly deaf , mark's experience is one he shares with his sisters, 8-year-old grace and 6-year-old evelyn were also born deaf.

    >> it's a challenge to have a deaf child because, you know, for obvious reasons, they can't hear you.

    >> reporter: for jennifer and ryan root, it's the absence of small moments most parents take for granted.

    >> i've never really sang my kids to sleep.

    >> reporter: but technology helps bridge the gap from silence to sound . the girls each have a cochlear implant , a bionic ear . grace got hers when she was 3. evelyn was 1. why do you like your ear?

    >> because it makes me hear.

    >> reporter: the cochlear implant uses external microphones to pick up sound , which is transmitted to an internal device and is recognized by the brain. for both of the girls, the implant means partial hearing, but nearly full integration into everyday life .

    >> did you think --

    >> reporter: at their public school , evelyn has her own teaching aide. grace 's classmates use a microphone that amplifies sound . measured progress for both girls, especially for grace , who remembers the first words she ever heard spoken by her mom.

    >> she said, " grace ."

    >> reporter: she said your name?

    >> yeah.

    >> reporter: was it pretty cool?

    >> yeah.

    >> reporter: but ryan and jennifer now see the possibility for an even more independent life.

    >> we want to give our kids every advantage that we possibly can, like all parents do.

    >> reporter: so, last month, the family drove ten hours to the los angeles house ear institute .

    >> hop up on the bed.

    >> reporter: where in back-to-back-to-back surgeries, the girls received second implants, and mark underwent a bilateral procedure for two cochlear devices. the operations were a success. and last week, the new implants were officially turned on. for grace and evelyn , simple advances.

    >> because i can stand on both sides of my teacher.

    >> reporter: for mark, his first chance to hear sound and his father's voice.

    >> to be able to just say, you know, hey, you know, "catch the ball," or whatever, is obviously very important.

    >> reporter: it will take time for the children to hear clearly with their new implants, but already, the operations have forever changed the tone of their lives. for "today," miguel almaguer, nbc news, california.

    >> and grace , evelyn and mark are joining us this morning along with their parents, ryan and jennifer . and we're also joined by dr. roshini raj, professor of medicine at the new york city school of medicine . good morning to all of you this morning. i guess jennifer and ryan , starting with you. for your son mark, this is a first. your girls already had one side done. now it's been less than two weeks, really, since now they have hearing in all their ears. what would you say has been the difference you've noticed? i know it's been a whirlwind for you.

    >> it has been a whirlwind for us. we just got back from los angeles , and to get their equipment, and we flew out here to new york four days later. and in the meantime, we're trying to adjust to sound , and that's a big adjustment coming from no sound to some sound , and so, that's been difficult.

    >> it takes a while for the brain to catch up, and so, this is not like turning on a light switch . it's really something that takes a lot of time. it might be surprising to know that your family did this, decided to do these, you parents, given the stress of surgery, decided to do this all in one day. why did you decide to do this all in one day, ryan ?

    >> well, there's a lot of follow-up appointments and they're long trips for us. so, having them all be coordinated is a big advantage.

    >> so, it was practical.

    >> it was very practical.

    >> mark is going to be the one to have the biggest change in the last few weeks, because he went from no hearing at all to hearing now in both ears, right?

    >> that's right.

    >> have you noticed any change in him?

    >> somewhat. 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, but he is just getting the sensation of noise and the sensation of hearing. his brain is getting used to it.

    >> and grace , i'm wondering -- i know, you like playing with your little brother , but having the hearing in both ears, i mean, how is it different?

    >> i don't really know.

    >> do you like it?

    >> yeah.

    >> yeah? and do you get to turn it up and down? like, can you turn it off if you don't want to hear something?

    >> well, i have this coil --

    >> uh huh , a coil behind your head.

    >> and if i take it off, i can't hear anything. a lot of people think that if i have the ear mold in, this --

    >> yeah, that you can hear stuff?

    >> then i can't hear.

    >> i see. i see. dr. raj, you know, jennifer actually has something called wardinbolg syndrome, and you say you are deaf in one ear. and this is connected to how the children were born deaf?

    >> this is a genetic syndrome, and it's passed on through families and it encompasses deafness of variable severities. so you might have mild hearing loss or severe deafness and also some skin changes, eye color changes. and when you have the syndrome, you have a 50-50 chance of passing it on to each child. so each pregnancy, there's a 50-50 chance.

    >> well, it's great, i know it means so much to you, and both of you, but especially since you had faced this knowing that giving birth you would potentially have this problem, to have your children now be able to hear. thank goodness to science. and i heard you've already gone to the rockettes.

    >> yes.

    >> you're having a good time. and getting to hear all of it, right, grace ?

    >> yes.

    >> congratulations to your family and thank you for being here this morning. i think maybe mark needs his pen. okay. we've got much more coming up. but for more on this story and more good news, you can head to our website at todayshow.com. once again, here's matt.

By
TODAY contributor
updated 12/11/2009 11:35:28 AM ET 2009-12-11T16:35:28

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.

‘A whirlwind’
“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.

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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.

TODAY
1-year-old Mark Root’s cochlear implant is still turned down low so that his brain can get used to the new sensation of sound.
So when Mark’s hearing was turned on, his father, Ryan, was the first to speak to him. But at the age of just 1, the father doesn’t expect the boy to remember.

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.

Direct stimulation
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.

TODAY
Grace Root, 8, showed the implant that allowed her to hear for the first time.
The family lives in the far northern part of California, in Siskiyou County, in the shadow of Mount Shasta. The 10-hour drive to Los Angeles, where the hearing specialists are, is the reason the family decided to have all three children implanted on the same day.

“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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