Toddler with Down syndrome overcomes lifetime of challenges

October is Down Syndrome Awareness Month. Meet an inspiring toddler with Down syndrome who has overcome two bouts with cancer and hearing loss.

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CLEVELAND – At just 3 years old, Grace Rosian, has faced a number of challenges.

Grace was born two months early, with Down syndrome in October 2016.

Within her first days of life, her parents learned she did not pass the newborn hearing screening test.

Typically, infants with impaired hearing have surgery, within their first year, to insert cochlear implants. The implants are designed to stimulate the hearing nerves to provide access to sounds and speech.

But for Grace, the procedure would have to be put on hold.

Shortly after her birth, Grace’s parents learned their little girl had transient myeloproliferative disorder (TMD) – a form of leukemia common in babies with Down syndrome.

She spent two months in Cleveland Clinic Children’s Neonatal Intensive Care Unit while receiving chemotherapy.

Less than one year later, Grace was diagnosed with acute myeloid leukemia (AML), a more serious cancer of the blood and bone marrow, which children with Down syndrome are at heightened risk for.

“Although AML is a curable form of leukemia for kids with Down syndrome, their bodies are extremely sensitive to chemotherapy,” explained Seth Rotz, M.D., a pediatric oncologist at Cleveland Clinic Children’s. “Grace was at such a risk for severe infections that she had to stay hospitalized throughout her treatment.”

Treatment for Grace’s hearing loss was paused, as surviving her life-threatening illness was the priority.

“Our challenge was to try and find a window of time when she was not being treated for cancer and healthy enough for surgery, especially in terms of her immune system,” said Samantha Anne, M.D., Grace’s pediatric otolaryngology surgeon.

At age 2, Grace was finally able to receive her cochlear implants.

The surgery lasted about 60-90 minutes, for each ear. Dr. Anne opened the mastoid bone, in the temporal region behind each ear, and inserted an implant. Next, she advanced an array of electrodes into the cochlea of each inner ear. After Grace recovered from surgery, she was fitted for speech/sound processors, which are worn behind each ear and stay in place with magnets placed beneath the skin.

Just a few weeks after Grace’s surgery, clinical audiologist Karen Petter, AuD, activated the external processors that operate the devices in her ears.

Grace’s mother, Valerie Revell-Rosian, wasn’t sure what to expect once her daughter’s hearing suddenly improved from the 75-85 percent loss she had in each ear.

“I don’t want to set myself up for some kind of great expectation and be let down,” she said. “If Grace has shown us anything, she has her own set of rules.”

When the moment arrived, and her implants were activated, Grace’s eyes widened. Not yet able to walk, she began to scoot backwards, apparently an attempt to move from the unfamiliar sounds.

“You never quite know what a (child) patient’s reaction will be,” said Dr. Petter. “Sometimes you’ll get crying, sometimes a smile; sometimes no big response. We don’t expect her to understand what she will be hearing at first. It will take a lot of work and practice for sound to have meaning.”

It’s early, but Grace, now 3, is adapting to her new world of sound. One of their favorite activities is singing, and clapping along to, “Row, Row, Row Your Boat,” and other children’s songs. Always enjoyable for Grace, the songs are now eliciting new reactions.

“Before, Grace knew the song and hand gestures because she was just mimicking me,” said Revell-Rosian. “Now, Grace can hear. I can see her eyes light up. She’s starting to think, ‘Oh, this is what it sounds like when mom is singing.’”

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