When Marina was just 6 months old, her family noticed something unusual—her neck often fell to one side. This seemingly minor issue led to a series of medical consultations and diagnoses that would shape the future for Marina and her family. Diagnosed with torticollis and abnormally low muscle tone (hypotonia) by her pediatrician, Marina was referred to a neurologist at Nemours Children’s Hospital, Florida for further evaluation.
Upon consulting with Nemours Children’s specialists, it was discovered that she was experiencing frequent seizures. “Various specialists conducted studies, leading to the discovery of congenital cytomegalovirus on February 2, 2022, just after her first birthday,” shares her mother, Kenialys. “This news left us shocked, confused, sad, anxious, and scared. However, the dedicated care from healthcare professionals at Nemours helped us regain optimism and hope for Marina’s future.”
Cytomegalovirus (CMV) is closely related to the viruses responsible for chickenpox and mononucleosis (mono). Babies infected with CMV can be at risk for various complications, including hearing loss, vision impairment, neurological issues, and developmental challenges. Even if a baby doesn’t exhibit obvious symptoms, they can still be susceptible to congenital hearing loss due to CMV, making it the most frequent cause of non-genetic hearing loss at birth.
“As Marina continued her treatment, we noticed concerns about her hearing,” shares Kenialys. “An ABR conducted on January 17, 2023 confirmed bilateral profound hearing loss. Marina promptly began receiving treatment and care, culminating in cochlear implants on June 28, 2023. It has been a challenging journey, but the exceptional care provided by Nemours over the years has been invaluable to us.”
Before receiving treatment at Nemours, Marina’s diagnosis affected her daily life. Activities requiring physical strength, such as rolling over, sitting, and crawling, were challenges. “Her hearing loss significantly impacted her development. It hindered her ability to understand speech and participate in activities requiring auditory engagement, such as singing,” shares Kenialys. Despite these challenges, Marina’s spirit remained unbroken.
Throughout their time at Nemours, Marina’s family experienced unparalleled care and compassion from every member of the healthcare team. “We felt an overwhelming sense of gratitude for the exceptional care we immediately began to receive from all the providers,” says Kenialys. “From the dedicated specialists who meticulously planned Marina’s treatments, to the compassionate therapists who worked tirelessly to aid her recovery, and the attentive nurses who ensured her comfort throughout, every individual at Nemours has played an indispensable role in Marina’s journey. Their expertise, empathy, and unwavering support have not only guided us through challenging times but have also given us hope and confidence for Marina’s future.”
Kenialys and her family are hopeful about Marina’s continued care at Nemours Children’s. “We feel really good about Marina’s recovery and the care she’s getting at Nemours,” says Kenialys. “The doctors and nurses there have been amazing, and we trust them completely. Knowing Marina’s in such good hands makes us feel calm and hopeful. We appreciate how they’re taking care of her and helping her get better every day. With Nemours helping us, we’re sure Marina’s on the right path to getting back to full health.” Looking to the future, Marina’s family plans to support her through every challenge. “We believe that the care she continues to receive at Nemours will greatly influence her progress and development.” For parents facing similar challenges, Kenialys says, “Never lose hope and live one day at a time. Even when situations feel tough and overwhelming, remember that calm comes after every storm.”
