When Megan and Josh’s son Edison was born, they both noticed some abnormalities. “The nurses immediately took him away to the table. Then I sensed a weird feeling in the room,” Megan said. The nurses told Josh that Edison had abnormal facial features, syndactyly – fused fingers and toes, and low oxygen levels. Megan and Josh met with a pediatrician, who then sent Edison to a children’s hospital to confirm Apert syndrome.
Apert Syndrome Requires a lot of Surgeries
An Apert syndrome diagnosis means Edison’s life will be full of surgeries. His first surgery, a craniotomy, took place when he was four-months-old. “They had to go in and create a way for his skull to be expanded to make room for his brain,” Josh said.
He has also had a couple of surgeries to release all his fingers. Those were very technical surgeries because if any fingers lost blood supply, Edison would lose his finger entirely. Right after Edison turned one, doctors diagnosed him with hydrocephalus, requiring a shunt be placed in his brain. “It’s never surprising to us now if a doctor says it’s time for another surgery,” Josh said.
The multiple surgeries are challenging for Josh and Megan. However, they have made lasting relationships with parents who go through similar surgeries with their children and attending physicians.
“The Challenges are so Worth It”
When Josh and Megan came home from the hospital with Edison, they realized they could not do this alone. It was hard to ask others for help. But the amount of love shown to their family has been overwhelming. For the longest time, Josh didn’t want to share about Edison’s Apert syndrome diagnosis publicly. After some encouragement from his sister, he started a Facebook page about Edison and his journey. “It was pretty amazing to see the number of people who would express interest or love…it’s a huge blessing,” Josh said.
“He is the happiest, most pleasant kid in the world,” Megan said. The multiple surgeries, delays, and other challenges they have experienced are worth it because of how much joy Edison brings to them. “I feel like when it was time for our daughter to start walking, it was exciting, but when he started walking, we were crying and it was a way bigger deal,” Megan said.
“When you have to care for a child who requires a different kind of attention, your capacity to love is increased dramatically. Your life changes in the most remarkable and positive ways.”