Cochlear Implants as a Journey to Hearing: Gracie’s Story

Since Kathleen had experienced a healthy pregnancy, she and her husband Mike were expecting a healthy baby girl.

“Out she popped, and everything was perfect,” Kathleen recalls. “When she failed her newborn screening test, we weren’t that concerned. We knew that babies could fail that test for a number of reasons, even if they have no hearing problems.”

baby-gracie
Baby Gracie

Two weeks later during a visit with her pediatrician, Gracie failed another hearing test. Her family was referred to Providence Speech and Hearing Center.

More testing provided a diagnosis: Gracie had severe to profound bilateral hearing loss. What hearing ability she did have would not be enough to allow her to speak and learn language.

“When I realized my daughter couldn’t even hear me tell her that I love her, I was a mess,” Kathleen recalls. “It felt like the world was falling apart in that moment.”

Gracie tried hearing aids, and although she was finally able to hear her parents say her name, the hearing aids were not enough to compensate for her hearing loss.

Since Kathleen is a special education teacher, she was already familiar with cochlear implants—surgically implanted devices that offer the hope of gaining the ability to sense sound.

“Deciding to pursue cochlear implants was a pretty easy decision,” says Mike. “We didn’t really give it a second thought. As a parent, you just want to give your kid every opportunity possible—especially the chance to hear.”

gracie-with-cochlear-implants-sign
Gracie was thrilled to get cochlear implants.

The cochlear implant artificially stimulates the inner ear area with electrical signals, which sends those signals to the auditory nerve, letting a person hear. The surgery is safest in most children around one year of age.

Meanwhile, Kathleen and Mike had been teaching sign language to Gracie and her older sister.

A few months after Gracie’s first birthday, she underwent bilateral cochlear implantation surgery at CHOC Children’s Hospital with pediatric otolaryngologist (ENT) Dr. Nguyen Pham.

gracie-cochlear-implant-surgery-day
Gracie was excited and happy the day of her cochlear implant surgery.

“When I first met Dr. Pham, I felt like I had known him forever,” Kathleen says. “He answered every single question we had and was honest with us throughout the process.”

gracie-and-parents-at-choc
Gracie’s parents were thrilled that her bilateral cochlear implant surgery went perfectly.

Kathleen knew the benefits for Gracie outweighed the potential complications that come with surgery, but as a parent, she was naturally worried about her child’s well-being.

“Every time I saw Dr. Pham I was frantic, and he was always so calming. It was nice to have that reassurance,” Kathleen says. “Dr. Pham is a miracle worker.”

Surgery went perfectly, and Gracie spent just one night in the hospital. A few weeks later it was time to officially activate her cochlear implants.

gracie-cochlear-implants-activation-day
Gracie was all smiles on activation day for her cochlear implants.

Even though Kathleen had faith the cochlear implants would work, but she was still anxious for activation day.

“Activation day was amazing and terrifying at the same time,” she recalls. “Everyone said not to worry, but I thought it might be too good to be true. I just kept thinking, ‘How could this little device be the thing that allows my baby to hear?’”

As soon as the cochlear implants were activated, Gracie’s face lit up and she pointed to her ears. Her parents let out a sigh of relief. When they took her home, they found the most joy in the small, mundane sounds around their house. Gracie could finally hear the front door open, the dog bark, and most importantly—her parents say I love you.

Before a child with cochlear implants will begin talking, they need time to get comfortable wearing their implants and undergo speech therapy. For Gracie, that time was just a few weeks. She still undergoes speech therapy twice per week, once at Providence Speech and Hearing Center and once at home.

To say Gracie is thriving is an understatement, according to Kathleen. Not only does Gracie talk and sing non-stop with her big sister Tess, but she mastered her ABC’s just shy of her second birthday. Her language skills now exceed most normal hearing children. Gracie loves going to Disneyland, and her family appreciates any opportunity to spread education about cochlear implants to inquisitive people they meet.

gracie-with-cochlear-implants-pumpkin-patch
At Disneyland and other places, Gracie’s family appreciates any opportunity to spread education about cochlear implants to inquisitive people they meet.

Gracie’s family has much to celebrate this year, but there’s something a few years down the road that Kathleen is most excited for.

“I am excited for her to go to kindergarten at a typical school. You have all these visions of your kids growing up, and for me to just drop my daughters off at one school is a big thing.”

Meet the cochlear implant team

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  • Music to a Little Girl’s Ears
    Penelope Grand had normal hearing from the day she was born. She loved to dance to music and she was easily woken by noises. Her parents, Luci and Paul, anxiously ...

Music to a Little Girl’s Ears

Penelope Grand had normal hearing from the day she was born. She loved to dance to music and she was easily woken by noises. Her parents, Luci and Paul, anxiously awaited her first word. Then, when she was about 10 months old, something changed.

“We really knew there was something wrong when I went to get her out of her crib after her nap one day,” mom Luci says. “She was calling out and fussing, she wanted out of there, and I came into the room but she wasn’t facing the door. I stood right in front of her crib and I called out her name, I clapped, but I got no response from her.”

Genetics are the cause of roughly half the cases of prelingual deafness, even when symptoms don’t appear at birth, as in Penelope’s case. Hearing tests and an auditory brainstem response (ABR) test revealed that Penelope had developed profound hearing loss in both ears. She had become essentially deaf.

“We were devastated,” Luci says. “I was preparing to hear ‘mild to moderate,’ not ‘profound.’ The air sucked out of my lungs. I wondered why. She is so sweet and loving, why did she have to lose her hearing?”

cochlear implant

Penelope’s audiologist prescribed hearing aids, but she had no benefit from them. That made her an ideal candidate for a cochlear implant, a new treatment offered at CHOC Children’s in close partnership with Providence Speech and Hearing Center. A cochlear implant is a small electronic device that is surgically implanted under the skin behind the ear, and has an electrode that extends into the cochlea in the inner ear. The implant’s electrode directly stimulates the cochlear nerves that perceive sound.

Dr. Nguyen Pham, CHOC pediatric otolaryngologist and head and neck surgeon, performed two outpatient surgeries on Penelope to place a cochlear implant on each of her ears.

“A cochlear implant can be life-changing for a child,” Dr. Pham says. “Children who would have been in the deaf community are now joining the hearing community because of cochlear implants. It is essentially restoring nearly normal hearing in these children.”

A Sense of Sound Restored

Oct. 13, 2015, was a memorable day for the Grands. That’s the day Penelope’s cochlear implant was activated, amidst her family and a crowd of supporters from CHOC and Providence.

Penelope begins to hear at 0:06.

“The first moment we knew she could hear was, well, it’s hard to describe what that felt like: joy, pride, happiness, excitement,” Luci says. “The look on her face was beautiful. We must have rewatched that video a hundred times.”

A cochlear implant does not translate sound perfectly. Those who wear an implant hear sounds with a robotic, mechanical quality. Following the implant’s activation, Penelope’s team of audiologists at Providence fine-tuned the frequencies of the electrodes—a process called mapping—until they produced the optimal sounds for her ears.

Now, she is undergoing comprehensive speech and language therapy, a crucial step in helping her interpret the sounds she hears and learn to communicate. She also uses American Sign Language.

“We are in awe of her, how much she’s already progressed,” Luci says. “She responds to her name now when we call out to her. She finally said her first word, bye bye, and she can now say mom. She has begun to dance again. She also has started singing in the car with me along to the music. We realized that she is so smart and so very happy, and her potential is endless. We are happy and grateful every day that she had this opportunity.”

Learn more about the CHOC Children’s Cochlear Implant Program.

 The Cochlear Implant Program is generously supported by Wildcard Army, in memory of Nixon Wildcard Hunter. 

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Infantile hemangiomas

hemangiomasInfantile hemangiomas are the most common of benign tumors in children, and most often occur in the head or neck area, a CHOC Children’s otolaryngologist says.

Because of their location, these masses can cause trouble breathing, swallowing or speaking, and in some cases can be life-threatening if they cause an airway obstruction, Dr. Kevin Huoh says.

Infantile hemangiomas are more likely to occur in babies born under certain circumstances:

  • a premature birth
  • being born from a multiple pregnancy
  • birth as a result of in vitro fertilization
  • being Caucasian and female

Parents of children with a head or neck mass should talk to their pediatrician and request a referral to an otolaryngologist, which is also known as an ear, nose and throat doctor.

“If there is any persistent mass or growth on the head or neck that doesn’t go away, we would really advise parents to have their child evaluated by a pediatric head and neck specialist,” Dr. Huoh says. “Neck masses are common in children, and they can pop up at any time.”

CHOC’s hemangioma clinic treats young patients with various vascular anomalies. A team of experts including otolaryngologists, plastic surgeons, cardiologists, hematologists, laser surgeons and interventional radiologists work together to help these patients.

Learn more about otolaryngology services at CHOC.

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    Gracie’s parents were heartbroken to disocver she had severe to profound hearing loss. After receiving cochlear implants, her language skills now exceed most normal hearing children.
  • Music to a Little Girl’s Ears
    Penelope Grand had normal hearing from the day she was born. She loved to dance to music and she was easily woken by noises. Her parents, Luci and Paul, anxiously ...
  • Tips for Tonsillectomy Recovery
    More than 530,000 tonsillectomies are performed each year in children ages 15 and younger, but the common procedure does require some recovery time. Children will typically have a sore throat for ...

Tips for Tonsillectomy Recovery

_T2V0782More than 530,000 tonsillectomies are performed each year in children ages 15 and younger, but the common procedure does require some recovery time.

Children will typically have a sore throat for a week to 10 days following surgery, and they usually feel well enough to resume their normal activities after two weeks, says Dr. Gurpreet Ahuja, an ear, neck and throat specialist and the CHOC Children’s Specialists Division Chief of Otolaryngology.

Children who are otherwise healthy and not obese or underweight typically leave the hospital the same day as their surgery, and most children can return to school a week later, he says.

Dr. Ahuja noted there is a small risk for bleeding after surgery, so children recovering from a tonsillectomy should stay close to home as a precaution. If excessive bleeding occurs, parents should contact their surgeon or physician immediately or take the child to the nearest emergency department.

Here are some tips for parents of children recovering from surgery to remove the tonsils and adenoids:

  • Ensure your child is drinking lots of water and fluids. Proper hydration is important to help prevent fever, bleeding or infections.
  •  To soothe the throat, have the child drink lots of chilled fluids like water and Gatorade, and eat soft, cold foods after surgery such as Popsicles, smoothies and ice cream.
  •  Have the child eat soft foods that are easy to swallow, such as pasta, rice, noodles, bananas and yogurt.
  • For pain management, patients ages 10 and younger can take over-the-counter pain medications such as ibuprofen and acetaminophen. Children older than 10 tend to have a little more pain and discomfort and may need a prescription pain medication. Contact your physician to ask about prescriptions for pain if needed, and also if you have any questions or concerns about your child’s recovery.

Learn more about otolaryngology at CHOC Children’s.

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