My husband, Ricky, and I welcomed our second baby boy at Norton Suburban Hospital, but the sounds of joy that normally fill a delivery room were replaced by confused gasps and an eerie silence. While Aiden lay on my chest, Ricky noticed something didn’t look right with Aiden’s hands and feet. His hands looked as is if they were in little permanent fists. His fingers and toes were fused together and the sutures of his skull had closed too early making his forehead protrude.
A nurse gave us information about Apert Syndrome, a craniofacial condition that occurs in only 1 out of every 160,000 births. Through tears in our eyes, we read that our baby would require numerous surgeries. We learned babies with this condition often have a poor quality of life. It is common for them to become institutionalized. We were heartbroken – yet determined to fight for our son’s future.
Aiden spent almost two weeks in the Neonatal Intensive Care Unit (NICU). It was such a difficult time for us. We had a one-year-old at home over 30 minutes away, but with the love and support of our family, we were able to stay close by Aiden at the Ronald McDonald Family Room located in the lower level of the hospital.
Ricky and I spent most of our time by Aiden’s bedside, trying to learn about his condition and learn how to care for his special needs. However, within the walls of the Ronald McDonald Family Room, we began to come to terms with this unexpected journey. We were able to research our son’s condition on the computer provided, grab a quick snack, and spend quiet time together watching television or resting in our private room.
Despite having more than 12 surgeries on his skull, eyes, hands, and feet since birth, Aiden is a very active, well-adjusted second grader. He has played baseball, soccer, gymnastics and basketball. He continues to amaze us with his bravery, determination, and resilience.
We will forever be grateful for the opportunity to remain close to our son while he was in the NICU. The Ronald McDonald Family Room was truly our “home away from home.” Even today, when we travel out of town for Aiden’s care, we stay at a Ronald McDonald House every chance we get. We deeply appreciate the volunteers and donors that make this resource available for families like mine.
– Taryn Skees