“Due to Crouzon syndrome, Johnny quit breathing”
For the first 7 months of his life, Johnny was congested and severely struggled to breathe normally. There were a few incidents where he stopped breathing completely and had to be rushed to the emergency room. His neck was stiff, and his head was titled to the side and appeared flat instead of round. With these symptoms, Johnny was finally diagnosed with Crouzon syndrome and Chiari malformation.
Crouzon syndrome is a genetic disorder that results in abnormal joining of the bones in the skull and face. In Crouzon syndrome, the bones in the skull and face fuse too early. The skull is then forced to grow in the direction of the remaining open sutures. This causes an abnormally shaped head, face, and teeth. Crouzon syndrome causes some infants, like Johnny, to have difficulty breathing through their nose due to the compression of their nasal passages, often causing reduced airflow through the nose. This is a major problem as babies are “obligate nose breathers,” meaning they prefer to breathe through their noses. There is no cure for Crouzon syndrome. The only treatments are the various surgeries to treat the symptoms.
Chiari malformation is a condition in which brain tissue extends into the spinal canal. The pressure and blockage of cerebrospinal fluid can cause a myriad of issues including neck pain, balance problems, muscle weakness, numbness, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, headaches, and insomnia.
To address both conditions, doctors performed two procedures in the span of one surgery. This included a surgical decompression performed to remove the bone at the back of Johnny’s skull and spine. The goals of the surgery were to relieve compression of the brainstem and spinal cord as well as restore the normal flow of cerebrospinal fluid. During the surgical decompression, doctors also remolded the back of Johnny’s head.
About 6 months later, Johnny underwent a second surgery in order to reconstruct the front of his face. In the future, he is expected to have continuous reconstructive surgery on his face and his eyelids in addition to operations for his sleep apnea, caused by his too small nasal airway. If not treated early in children, sleep apnea can lead to problems with how the heart and brain develop. Johnny’s illnesses have affected his hearing and speech. He requires hearing aids and attends speech therapy.
Johnny is an outgoing 5-year-old boy who loves making new friends. His current interests include playing with his dinosaur toys, watching Teenage Mutant Ninja Turtles, and reading Five Little Monkeys Jumping on the Bed.
Kids Wish Network is planning a once-in-a-lifetime wish for Johnny; make sure to stay up to date by checking back soon for all of the details on his spectacular experience!