MANSFIELD – When Ontario resident Macey Kinney was born, her mother, JeriLynn Kinney, discovered there were some complications with Macey’s birth, though she wasn’t given a proper diagnosis at the time.
It was when Macey entered the sixth grade that they discovered she had Noonan Syndrome, a genetic disorder that prevents normal development in various parts of the body.
Growing up, Macey learned to overcome any adversities she faced with the help of her mother. As it turned out, she would need that kind of mindset herself at 19 after getting pregnant and discovering it was a high-risk pregnancy.
Macey delivered her son, Zealand, 3, in 2018. To her and her mother’s sadness, Zealand was born with Noonan Syndrome along with other health problems. A month later he was also officially diagnosed as profoundly deaf.
“At first it was hard,” Macey said. “Not only in the hospital… not realizing it, not comprehending it well enough, because I was 19 at the time. And so, being a young mom it’s like, ‘Oh God, like, how am I going to do this? What am I going to do?”
“She had lots of anger,” JeriLynn added. “Seeing her cousins have healthy babies, people she went to school with have healthy babies… and then she didn’t. She was very angry that her child also had Noonan Syndrome and other health issues, and on top of all that was deaf also.”
Between discovering Zealand was deaf and coming to terms with what that meant moving forward for the rest of their lives, the Kinney’s struggled at first with coping. One day, a month after Zealand was born, they were inside a McDonald’s bathroom and the hand-dryer went off. What would normally startle a young infant didn’t faze Zealand at all, and it finally hit the Kinney’s that Zealand was actually deaf.
The Kinney’s knew immediately that they needed to give Zealand the best care possible in order to ensure he would grow up living a happy, normal life despite his circumstances. They decided to take him to Nationwide Children’s Hospital where they began to discuss Zealand’s treatment plan and receiving cochlear implants.
“When a child is diagnosed with hearing loss, they get hearing aids. And then, if those hearing aids are helping them to the ability that they can hear, they’re eligible to get cochlear implants,” said Mary Lofreso, Speech Language Pathologist at Nationwide Children’s Hospital (NCH).
The Kinney’s wanted Zealand to have cochlear implants within his first 12 months of life, however financial and insurance issues stalled them. Luckily, Zealand’s surgeon, otolaryngologist Prashant Malhotra, M.D. at NCH “went to bat for them,” according to JeriLynn.
The Kinney’s scheduled for Zealand to receive cochlear implants the day before his first birthday.
“There was never a doubt in our mind that (getting the cochlear implants) would be the path we traveled,” JeriLynn said. “We knew that would be the right decision, because there are babies born with flaws… but as a general rule, hearing and seeing is a part of God’s design. And so we knew how much hearing meant to us. So there was never a doubt that that would be a path we go,” JeriLynn said.
They couldn’t have hoped for better results or a relationship with NCH. After receiving his cochlear implants, Zealand started going to specialty speech services through the NCH Hearing Program, which he’s been attending for the past three years. He continues to work with highly specialized speech language pathologists in both Columbus and Ontario.
Mary Lofreso meets with the Kinney’s once a week.
“When I (first) saw (Zealand) he was beginning to catch up with his language, but now he’s completely caught up to his same-age typical hearing peers,” Lofreso said.
Lofreso’s been working with the Kinney family for over a year and a half. For a child as young as Zealand, Lofreso teaches with a family-centered, play-based approach. She encourages parents or guardians to attend sessions so that they can understand what the child is learning and be able to practice outside of therapy.
“They always say it takes a village, and I think Zealand is a great example of that because hearing loss was identified at birth, which is really great. So he was able to get his cochlear implants when he was only 12 months old and start treatment right off the bat,” Lofreso said.
“So, right at three months, he started having speech and language therapy and they started doing some coaching with his family. And at Nationwide it’s really nice that we have a very holistic team where we have EMT positions, the audiologist and the speech therapist working very closely together with the family,” Lofreso said.
After getting his cochlear implants, Zealand has shown exponential growth. He’s on the same education level as pre-school children his age and was recommended to attend a mainstream preschool in the fall. Though, due to the pandemic, the Kinney family have chosen to put that on hold. Zealand’s also involved in hearing studies at The Ohio State University because he’s seen as a huge success story.
Macey and Jerilynn are excited to see how far Zealand will go.
“The only thing that could possibly hold him back is himself, and we won’t allow that,” JeriLynn said. “He will always be encouraged to do anything and everything.”
