Every expecting mother hopes for a healthy baby – Katherane Borja certainly did. But at her 15-week prenatal doctor’s visit, her entire pregnancy changed. After an ultrasound detected a cystic hygroma, a fluid-filled sac, on the back of her baby’s neck and fluid around his heart, further blood tests confirmed a rare genetic mutation called Noonan syndrome.
“We were told he would be born with a heart defect, low muscle tone, malformations of the bone, developmental delays, bleeding issues, unusual facial characteristics, and seizures,” Katherane recounts. “When we learned the news, there were some feelings of denial, and then it turned to resolve. "We tried our best to remain positive and hopeful that he would be able to have a normal and happy life.”
Months later, Katherane welcomed Levi to the world. Since his birth, Levi has had a wide range of specialists at Kapiolani Medical Center for Women & Children treating his various medical needs, including cardiologists, urologists, neurologists, geneticists, speech therapists, physical therapists, and audiologists.
Born with severely profound hearing loss, he started wearing hearing aids at 5 months old and received bilateral cochlear implants when he was 13 months old. He has weekly speech therapy sessions, monthly audiology sessions, and also does physical therapy to help with his balance following the cochlear implant surgery.
Katherane credits his audiologist, Ann Narimasu-Phomenone, and his speech therapist, Kimi Perez, for believing in Levi and supporting his development.
“They were genuinely caring, supportive, motivating and loving from the beginning,” Katherane recalls. “Kapiolani has become an extended ohana that cheers for Levi and celebrates every milestone he reaches. Their support has made it easier to face every challenge and instilled hope in us that Levi’s condition would improve.”
Now 2 years old, Levi is thriving in his ability to learn, listen, and speak, and Katherane is immensely grateful to have the team at Kapiolani on their side.
“You have given us a vision for Levi’s future. He has many milestones and challenges ahead, but he has championed them again and again. We are so blessed to have you share in Levi’s life journey with us.”
Published on: December 8, 2020
