Have You Heard? Catarina’s Story
By Christina Orlovsky Page
Imagine a world without sound—without music, voices, birds chirping, dogs barking.
For the roughly two to three out of 1,000 children born in the United States with a detectable level of hearing loss in one or both ears—according to the National Institute on Deafness and Other Communication Disorders—this silent world is their reality. But thanks to modern technology, it doesn’t have to be. While hearing aids improve ability in many people with disordered hearing, some have hearing loss so significant that the hearing aids are not enough; others have hearing that deteriorates over time, rendering hearing aids ineffective. For these individuals, cochlear implantation can be the answer.
“Cochlear implants have been a game changer,” says Daniela Carvalho, MD, MMM, FAAP, medical director of surgical services and director of the Hearing and Cochlear Implant Program at Rady Children’s Hospital, and a professor of pediatric otolaryngology in the Department of Surgery at UC San Diego School of Medicine. Dr. Carvalho explains that there are two types of childhood hearing loss: prelingual, or deafness from birth, and post-lingual, which occurs when hearing, speaking children lose all or some of their hearing suddenly or over time. “For pre-lingual patients with profound hearing loss, you want to implant them as soon as possible—ideally under a year old. We are starting to implant infants as young as 6 months old, knowing they’ll do much better if they’re exposed to sound at an early age,” she says. “Children with post-lingual hearing loss can be implanted at any point. As long as you have some sound going into your brain up to age 3, you’ll have some connection to sound, which you use for speech and speech recognition. Our brains are pretty amazing.”
The success of any implantation, Dr. Carvalho adds, is contingent upon family support and a solid followup therapy plan. “You don’t just activate the implant and that’s it,” she says. “The patient needs mapping with an audiologist and lots of speech therapy. But what really makes the greatest impact is what the family does at home. They need to be reading to the child and talking to them—bombarding them with sound. I always say that if the parents are hoarse at the end of the day, they’re doing a good job.”
A Hearing World for Catarina
Juliana Maltez had been at the hospital for less than an hour on March 13, 2018, when her second child came into the world. Juliana recalls newborn Catarina being “healthy and happy,” and the birth being “nothing out of the ordinary.” And with no hearing loss in the family, she thought nothing of it when the nurse doing Catarina’s newborn hearing screening was concerned that the machine wasn’t working right. After the second test the next day, she started to wonder whether something was wrong. When Catarina didn’t pass the third time, worry set in. Juliana was told it could be many things—fluid or a blockage—and that it would be very unusual for Catarina to have been born deaf. But her first week at home told a different story. “We noticed she wasn’t startling to loud sounds or responding to noise at all,” Juliana recalls.
Finally, at 1 month old, tests confirmed the Maltezes’ fears: The infant was profoundly deaf in both ears. “It was devastating,” Juliana says. “The audiologist told us we could find out whether it was caused by a genetic defect. But first she said we had to decide how we wanted to communicate with Catarina. She was the first one to tell us about the cochlear implant.”
When Catarina was 3 months old, the family moved to San Diego from Northern California, confident that Catarina would be in good hands with the team at Rady Children’s. Once they got settled in Carlsbad, Juliana started taking a sign language class at Palomar College. That’s when she made the decision to go ahead with the implant. “I want Catarina to have options,” she explains. “It’s a hearing world. I want her to learn sign language—I’m never going to take that away from her—but I don’t want that to limit what she’s able to do. I want her to have the option to hear. With the implant, there is that option.”
At just 7 months old, Catarina had surgery for cochlear implantation in both ears. On the day of their activation, her entire family crammed into the audiologist’s office to see the results. “When she activated the first side, my voice was the first thing Catarina heard. She got the biggest smile on her face, and it just felt right,” Juliana says. “They turned the second one on, and she was so smiley and happy. Now every morning when I turn them on, Catarina gives me a smile. I’m so grateful for the technology that’s allowed this to be possible.”
Juliana and her husband know they’ll have to work to ensure Catarina’s implants are successful. The family speaks Portuguese, Spanish and English—but for now, language is less important than sound itself. “We’re just focused on talking to her as much as possible so she starts to recognize sound and speech,” Juliana says. “The more you talk, the more the light on the implant blinks, so you know it’s working and she’s hearing.”
Asked whether she’d recommend the surgery to other parents whose infants are diagnosed with hearing loss, Juliana’s answer is a resounding yes—especially in the expert hands of Dr. Carvalho. “I trust her with my daughter 100 percent. You can tell by the way she treats you and the people she works with that she loves what she does,” she says. “It was very hard for me in the beginning, not knowing where to look or what to do and being completely blindsided by Catarina’s diagnosis. The guidance we had at Rady Children’s—and the reassurance we got that it wasn’t our fault—were so important. I’m happy to share my story to let other moms in the same situation know there are options.”
An Ivy League Success Story
At 26, Jordan Moore is the youngest city planner in San Diego’s government. She has a bachelor’s and a master’s degree from Yale. And she’s been deaf since age 2—the result of a streptococcal and pneumococcal infection. Jordan got hearing aids before her third birthday, and grew up straddling the fence between the hearing and nonhearing communities.
“I only remember hearing,” she says. “I was mainstreamed in school, but had a lot of exposure to the deaf community through Deaf Community Services. That’s where I learned about cochlear implants. But everything about them seemed scary to me. I thought they’d be huge, that I’d have to shave my head, and that there was risk of damage to whatever was left of my hearing.”
It wasn’t until she was 17 that she changed her mind. Her hearing had been getting worse, and when her ability to recognize speech was nearly gone, her doctor told her she was qualified for implants. She remained reluctant until she met a Rady Children’s audiologist who had them, and told her what a difference they’d made in her life. “Talking to her and getting to know her story, we were so alike,” she says. “We were both strong in school and enjoyed succeeding academically.”
That audiologist’s perspective was the encouragement Moore needed—and her first implant was an immediate success. “Within a day or two I was able to hear tones I’d never heard before,” she recalls. “I could hear my Rice Krispies. I would be upstairs and able to hear people talking downstairs, which I’d never been able to do before. It was a whole new world.”
At 20, Moore got her second implant, and she’s never looked back. In fact, she’s looking forward to all the new technology that continues to make cochlear implants even better. “The new processors have all these high-tech features that are so exciting,” she says. “I remember when iPods came out, feeling envious when I saw my friends sharing headphones, because I could never do that with hearing aids. Now, the cochlear implant and Apple have a partnership that allows me to stream music right into my ears! It was a personal fantasy of mine that I never imagined coming true.”
While the fun factor is a bonus, Moore truly appreciates the opportunity the implants have given her—and wishes the same for all deaf children. “I understand that the deaf community has some valid concerns—that if all deaf children are implanted they’ll choose to only speak, not sign, and they’ll lose part of their culture,” she says. “But speaking as someone with hearing loss for the majority of my life, I want all opportunities to be open to me. I wish all deaf kids could have that opportunity—to not feel like there’s anything holding them back.”
Originally published in the Spring 2019 edition of Healthy Kids Magazine.