At a New Year’s Eve party, Nicolas’s parents noticed something was off when he didn’t react to the loud fireworks. This moment was a turning point, leading to a diagnosis that would change their lives.
This incident prompted Nicolas’s family to seek further medical attention for their son. As they delved deeper into Nicolas’s symptoms, it became clear that something more significant was at play. The diagnosis, which came when Nicolas was just two years old, revealed a complex set of challenges: deafness in both ears, Cytomegalovirus (CMV), autism, mixed receptive-expressive language disorder, and global developmental delay. Each of these conditions brought its own set of hurdles, but the impact on communication was particularly clear.
The symptoms of congenital Cytomegalovirus (CMV) infection can vary. Most babies infected before birth show no symptoms after delivery, but they are at risk for hearing, vision, neurological, and developmental problems. Even babies without clear symptoms are at risk for congenital hearing loss. CMV is the most common cause of non-genetic hearing loss at birth.
“It affected communication,” his father, Luis, shared. “Nicolas would get very frustrated because he couldn’t understand us, and we couldn’t understand him either.” The family found themselves navigating a new world where the usual means of communicating would need to change.
Shortly after the diagnosis, Nicolas’s family began searching for the best possible treatment options. Their search led them to Nemours Children’s Hospital, Florida, where they were introduced to a team of experts dedicated to helping children like Nicolas. Dr. Cedric Pritchett, a leading pediatric otolaryngologist, took the lead in Nicolas’s case, alongside Vanessa Baztan, a certified speech-language pathologist, and audiologist, Dr. Chelsea Clancy.
“Our experience with Nemours has been amazing,” Luis shares. “We can’t complain about anything. Everyone has been so professional, kind, and warm toward our son. They genuinely love him. Honestly, the way they treat him makes us feel like he’s not just another patient, but a friend or even family to them.”
In Nicolas’s case, the road to improvement has been slow but steady. Nicolas has received bilateral cochlear implants and participates in ongoing specialized speech therapy. “What we love the most is seeing how excited every member of his care team gets with each step forward he takes,” Luis adds. “They celebrate with us.” The consistent encouragement and positive reinforcement from his doctors and therapists have not only boosted Nicolas’s confidence but have also kept the family motivated through challenging times.
Now 5 years old, Nicolas has already made remarkable strides in his communication skills, a testament to the care and support he has received. His parents are proud to see the progress. “Our plan is to stay committed to the process and keep going until Nicolas reaches his full potential,” says Luis. His family is determined to provide him with the support and resources he needs to succeed.
Reflecting on their journey, Nicolas’s family offers heartfelt advice for others facing similar challenges. “You are not alone,” says Luis. “At first, this journey can feel very scary. But the process is beautiful. Watching our children grow and improve is both emotional and rewarding. We learn to see every little step as a blessing, and in the end, it’s all worth it. Let our children be our fuel — they’re always smiling, so why shouldn’t we?”
