2 Sisters with Hearing Loss Get Cochlear Implants on Same Day: 'There's Nothing That These Girls Can't Do' (Exclusive)

When Leah Salzberg was 2 1/2 years old, her parents Matthew and Jessica began to worry about her speech — “or lack of speech,” Jessica says.

Until then, Leah was a typical child in Surfside, Florida, according to her mother, an education specialist.

When her speech development stalled, the Salzbergs tried speech therapy, but the twice-weekly sessions were frustrating and disappointing.

Leah’s parents also noticed that when she walked a few feet in front of them and they called her name, she didn’t respond. “We started to worry,” recalls Jessica, 33.

About halfway through the school year, Leah’s preschool teacher asked Matthew and Jessica if Leah’s hearing had been checked recently. “I found Leah looking at my mouth,” said the teacher. “And if it’s on the other side of the classroom, it doesn’t react.”

Sophia and Leah Salzburg.

Jessica Salzberg

Leah was taken to an ear, nose and throat doctor who said her ears were full of fluid and suggested that she be given tubes to stop the fluid from building up. The doctors also tried out the hearing testing booth.

But the family didn’t get the right answers until they tried a special auditory brainstem response (ABR) test under sedation. An audiologist found that Leah has moderate to severe bilateral hearing loss.

“The first words she said were, ‘I’m actually surprised at how much she’s talking given her hearing loss — which is moderate to severe,'” says her dad Matthew, 38, a hematologist and oncologist. “I will never forget it.”

The doctors gave Salzburg information about the hearing aids. “It was a devastating day,” Jessica remembers. “Just devastating.”

Soon after, Leah is equipped with her devices. “She hated them,” her mother says. “She would take them out. It was a struggle.”

Leah, Mia and Sophia Salzberg.

Jessica Salzberg

In the summer of 2022, the family learned that Leah’s hearing loss was caused by the extremely rare MYO-15A gene. Both Matthew and Jessica carry the gene. According to the National Institutes of Health, MYO15A is “the third most important gene in hereditary sensorineural hearing loss.”

The diagnosis meant her hearing loss would continue to worsen.

“She would be completely deaf,” says her mother. “It’s progressive hearing loss. It won’t get better, it will get worse. You can’t stop it, you can’t prevent it.”

Hear mom’s story Raising two deaf sons and the ‘magical’ moment when they could hear for the first time

At the time, Leah’s younger sister Sophie was 20 months old. The couple was pregnant with their youngest daughter, Mila.

Knowing that Leah’s condition was genetic, Jessica and Matthew tested Sophie’s hearing as well. When they put her in the hearing testing booth, she was unresponsive.

Genetic testing confirmed that Sophie has the same rare gene as Leah. (Their sister Mila was born on August 25, 2022, and although she is a carrier of the gene, she has normal hearing.)

“As a parent, it kills you,” says Matthew. “When we first heard the diagnosis, we were devastated.”

The Salzberg family.

Jessica Salzberg

Both Leah and Sophie rapidly lost their hearing, and soon “Leah lost her hearing,” says Matthew.

– Even with hearing aids, she could not hear.

That’s when the family started thinking about cochlear implants.

While hearing aids amplify sounds that damaged ears can detect, cochlear implants bypass the damaged parts of the ear and directly stimulate the auditory nerve, according to the National Institute on Deafness and Other Communication Disorders.

The surgeon places the cochlear implant under the skin through a small incision behind the ear, and then the electrode is inserted into the inner ear. A few weeks later, the device was turned on.

“When people mentioned them months before, I would say, ‘I don’t want to hear that. I can’t look at them. NO, that means my child is deaf,'” says Jessica. – It was a really difficult choice.

But, she adds, “we wanted to give them all possible opportunities in their future.”

Leah and Sophia Salzberg.

Jessica Salzberg

Leah was almost 4 years old and Sophie was 2 years old when they had back-to-back cochlear implant surgeries on January 4, 2023 at the UHealth Ear Institute Children’s Hearing Program in Miami.

“They did it together,” says Jessica. – They were superstars.

The outpatient surgery lasted four hours for Leah and three hours for Sophie.

The girls spent three weeks recovering at home. Their classmates sent get well wishes. During that time, they had “zero sound,” says Jessica.

“They couldn’t hear, so for three weeks, no sound, no sound. They were at my house. I did everything in the world to keep them occupied with the other senses we have, and thank God, the time passed.”

BachelorDaisy Kent uses cochlear implants, gets advice from show’s first hearing-impaired contestant (Exclusive)

On January 23, 2023, the devices were activated. “Leah was giddy, happy and excited,” says their mother. “Sophie was kind of scared and crying, but that’s a good thing – because she responded. We left with four huge backpacks full of devices and accessories and equipment. And we went home to start navigating this new world with cochlear implants.”

It took about six to nine months to fully learn how to successfully use the implants, Jessica and Matthew say. The external device is charged at night and they turn to battery power in the morning, with Leah and Sophie wearing the devices in their headbands.

When the girls wake up, they turn on the external devices. “We say, ‘Eyes open, ears up,'” says their mother. “The way they see me putting on my glasses in the morning to see is the same way they put on their ‘super ears’ to hear.”

Matt and Jessica Salzberg with their daughters Leah and Sophia.

Jessica Salzberg

Now, she says, “They’re doing amazing.”

Leah, 5, starts kindergarten in the fall. He likes gymnastics, dancing, swimming. Sophie, who is now 3 years old, also does gymnastics and plays soccer. “They love being outside,” says Jessica, who now works with students who are deaf or hard of hearing. “They like to explore. They are happy.”

The couple is now trying to give back and help others by talking to other parents of children who are considering cochlear implants. “We tell them there is a light at the end of the tunnel, that things will be okay,” says Matthew.

Jessica adds, “There’s nothing these girls can’t do.”

Categories: Trends
Source: HIS Education