On a snowy February morning, our second son, Aiden, entered the world into a room full of hushed doctors and nurses. Having had no prior knowledge of Aiden’s medical condition, we were all shocked to see his tightly fisted hands, webbed toes, and scrunched face. The doctors exited the room – taking Aiden to the NICU – and leaving us alone, scared and confused.
What just happened? What was wrong with our precious baby boy? So many thoughts and emotions swirled in our heads.
A few minutes later, a doctor emerged with a computer printout with the words “Apert Syndrome” in big black letters at the top, the product of a hurried Google search for answers. We skimmed the article, terrified as we read phrases like "mentally retarded", "recommed institutionalization" and "severely compromised quality of life".
It wasn’t until a few weeks later that we began to fully understand the road that lay ahead of us with our son. And it was then that we realized that much of what we found online was inaccurate and outdated. The doctors in the NICU performed thorough examinations on our baby boy – all which proved that aside from his physical malformations, his heart, brain, lungs and other major organs appeared normal and healthy. Perhaps it was part denial, part hopeful thinking, but we refused to believe Aiden’s future was anything but bright. We began to research craniofacial specialists, networked with other families with an Apert syndrome diagnosis, and fought hard to give Aiden the most normal life possible.
Eventually, we realized that we held the key to his success. We took the reigns and our once broken spirits morphed into steady advocates for our child. We chose his team of doctors carefully and took all the necessary steps to get him the therapies he needed. We watched him flourish into a smart and happy baby – and while he reached milestones at a very different pace than his older brother had, he met them nonetheless. After a rough start, we were finally able to dig out from the dark to see that our lives would not be the doom and gloom that we feared, but rather, with the right attitude, extremely fulfilling and happy.
As I wrote about Aiden’s journey on my personal blog, I began hearing from families who had a child with Apert syndrome who were inspired by our positive outlook and approach to Aiden’s care. That is how the idea for apertOWL came about. I wanted to provide a resource for families and individuals affected by Apert syndrome. One that would show the tremendous potential each of our children have. One that would provide hope that this challenge before them was not going to crumble their spirit, rather it could indeed enrich their lives in ways they may not have thought possible in the beginning. One that would provide honest, accurate and current information for families and medical professionals alike about the quality of life that children born with Apert syndrome can achieve.
One of the families we were connected to by our blog was the Lynch family. As time went on, we realized they were as passionate as we were, so together we developed apertOWL. I hope you will take a few minutes to look around this site and share it with your friends and loved ones. Not only can the information here benefit those who have been touched by Apert syndrome first hand, but it can also help to spread awareness and a message of acceptance to those who may know nothing about it.
The Skees Family -- Ricky, Taryn, Ethan, Aiden, Hudson and Nolan