NCH Hearing Program
Join our Hearing Program at Nationwide Children's Hospital and help us support or Mile Champion, Olivia, and other children with hearing loss!
Hometown: Grove City, Ohio
Age: 9 (on race day)
Diagnosis: Bilateral Hearing Loss, Necrotizing Enterocolitis (NEC), Twin to Twin Transfusion Syndrome (TTTS)
Olivia is an identical twin. She and her twin sister were born with Twin to Twin Transfusion Syndrome, which is a rare disease of the placenta in identical twins that causes one twin to be the “donor twin” and have decreased blood volume throughout their mother’s pregnancy.
Olivia was the donor twin.
Because of this, Olivia was born with only half of her left arm. Due to a vascular disruption and lack of necessary blood flow, her arm just stopped growing. She and her sister were monitored very closely during the rest of the pregnancy.
Just a week after Olivia and her sister were born 7 weeks early, it was confirmed Olivia had Necrotizing Enterocolitis (NEC) – which is where portions of the intestine tissue begins to die off. She wasn’t growing as quickly as her twin, who was able to come home after just 3 weeks in the NICU. 40% of Olivia’s colon was damaged and needed to be removed. She endured a 10 week stay at the hospital post-surgery while she fought to recover. Olivia’s been a fighter since day one.
It was when she was finally being discharged to go home that doctors discovered Olivia might have hearing loss, after she failed two hearing screenings. Olivia received her first set of hearing aids at just 6 months old.
Olivia’s conditions don’t stop her at all for doing what she loves and being a happy, energetic 9-year-old. She has a prosthetic helper arms with interchangeable attachments that she uses for gymnastics and when she’s riding her bike. Olivia says she’s excited to be a patient champion for the marathon because she will “be part of something so amazing,” – but Olivia herself has overcome so much and is already “so amazing.”
“She is a, courageous, caring, brave and smart little girl,” says Nikki, Olivia’s mother. “Olivia came into this world as a very tiny, yet very strong little girl fighting to survive. To us, this can be related to the strength it takes to train for and complete either the Nationwide Children’s Hospital Columbus Marathon or ½ Marathon. Maybe one day, she will participate in this event herself. She is our champion!”
Nationwide Children’s Hospital’s Hearing Program provides comprehensive diagnoses and management of hearing loss for children up to 21 years old. Our hearing experts offer a wide range of services to address the needs of patients and their families – no matter how slight or rare their hearing loss may be. Our team brings together otolaryngology, audiology, speech language pathology, family support, nursing and social work to help with every aspect of a child’s treatment.