Early in my pregnancy, we learned from an OBGYN that our daughter would face a series of complex medical challenges — her left eye had not fully developed, she had agenesis of the corpus callosum, and significant spine and ribcage abnormalities. These findings led to a diagnosis of Aicardi Syndrome.
When the doctor shared the diagnosis, his initial recommendation was to consider terminating the pregnancy, then he left us to process the devastating news in disbelief and sorrow. In that moment of heartbreak and confusion, we chose faith. We decided we would not give up on our child or on God. From that day forward, we made a promise to always champion our daughter’s life and advocate for her future, no matter what challenges lay ahead. We left that doctor were soon referred to and followed by another high-risk maternal-fetal team, where we continued to receive compassionate and specialized care throughout the remainder of the pregnancy.
When Phoenix was born, our hearts overflowed with love and hope. But her journey began with many obstacles — including kyphosis of the spine and subclinical seizures. Because of restrictive lung disease, she required a constant flow of oxygen, and after spending 52 days in the NICU, we were overjoyed to finally bring her home.
Just weeks later, Phoenix experienced a medical emergency after accidentally aspirating. Paramedics were called, and tests at the hospital revealed dangerously high levels of CO₂ in her blood. She was rushed to the PICU, where she remained for 54 days. During that time, she required a tracheostomy to help her lungs function effectively. It was a terrifying period for our family, but once the tracheostomy was placed, we saw an incredible transformation. Phoenix became full of life and energy again. Although she could no longer vocalize, her bright spirit and expressive eyes spoke volumes.
Over the years, we have faced numerous respiratory complications, leading to multiple emergency visits and hospital admissions. One of those visits became a pivotal turning point in Phoenix’s care. During an emergency visit at another hospital, our pulmonologist — seeing that we weren’t receiving the ENT support we urgently needed — contacted Nemours Children’s Hospital, Florida and had us transferred immediately. That was when we first met the Nemours Children’s ENT team, and our lives were forever changed.
For more than two years now, Dr. Cedric Pritchett and his exceptional team — including Matt Lee, PA and nurse Ashley Johnson — have been guiding Phoenix’s care. Their expertise, compassion, and commitment have made all the difference in our daughter’s journey. They don’t just treat their patients — they truly see them. They take the time to listen, to explain, and to connect on a personal level. Their warmth and humor have transformed what could be overwhelming days into moments filled with laughter, reassurance, and hope.
Under their care, Phoenix has undergone multiple trach stoma revisions, medication therapies, and regular bronchoscopies and laryngoscopies to ensure her airways remain open and clear. Each procedure, while daunting, has contributed to her stability and overall well-being. Each visit, each surgery, and each follow-up has reinforced our gratitude for the incredible Nemours ENT team. We know that Phoenix will require lifelong care from her specialists, but having this team by our side makes that reality far less daunting.
The Nemours ENT team has not only improved Phoenix’s quality of life — they have restored ours. Their dedication has given us confidence, peace, and the reassurance that our little girl is in the very best hands.
To parents who may be walking a similar path: keep advocating. Don’t settle. You are your child’s best doctor and nurse because you know them better than anyone. Use that knowledge to guide the healthcare team — you are a vital part of it. Trust your instincts, lean on your care team, and never lose hope. There will be hard days, but there will also be beautiful ones — filled with light, love, and moments that remind you just how strong your child truly is.
