Caiden is a Heart Warrior and has overcome many obstacles that a boy his age shouldn’t have to face. At just 10 years old, he has undergone three open-heart surgeries, spinal surgery, countless procedures and heart caths. He has 100 percent heart block and is pacemaker dependent. He has a powder carbon mechanical aortic valve and has suffered a severe transient ischemic attack affecting his left side.
When Caiden was five months old, his parents were shocked and scared with his diagnosis of L-Transposition of the great arteries, Ventricular Inversion, Pulmonary Stenosis and Sub-Pulmonary Stenosis, and were informed that at some point, he would require open-heart surgery. At two years old, Caiden was still not walking, and it was discovered that he had a tethered spinal cord and vertebra and rib deformity. He underwent spinal surgery and now walks, although at times he needs the aid of a walker and wheelchair. At 5 years old, it was discovered that Caiden also had a ventricular septal defect and his left ventricle was beginning to fail. Being such a rarity, his case was put before the cardiology board, and he underwent his first 10-hour open-heart surgery consisting of a double switch.
At 6 years old, Caiden began to experience atrial flutter and was found to have a severe aortic leak, which was causing his left ventricle to bulge. His second open heart surgery was performed in April of 2016, and his aortic valve was replaced with a powder carbon mechanical valve. His third open-heart surgery was performed to place a vascular patch at the neck of his new mechanical aortic valve after being rushed by ambulance with a hemothorax on the right side. Blood had filled up around his lungs making it impossible for his lungs to expand to breathe. His parents were told it was a complex fix on a complex heart.
A week later, Caiden suffered from an ischemic attack (stroke) which affected his left side. He worked extremely hard in speech therapy, physical therapy and occupational therapy, and continues to work to regain his mobility. His family continues to monitor his blood coagulation or INR with a home monitor and adjust his coumadin accordingly. Caiden will require surgeries for the rest of his life to replace the batteries on his pacemaker, and he will need one or two additional open-heart surgeries as he grows to replace the mechanical valve in his heart.
When his family discovered Caiden could have his wish granted by Make-A-Wish Iowa, they were elated. “As a mother, when I found out that Caiden was eligible for a wish…. I was very overwhelmed and emotional,” remembers Jamie, Caiden’s mother. “What mother doesn’t want the moon and the stars for her child? I will never forget the look in his eyes and his excitement in finding out he was going to have one of his wishes come true. He has been through so much pain and strife in his young life, and I was so grateful to Make-A-Wish for allowing him this opportunity.”
Caiden put a lot of thought into filling out his Make-A-Wish Idea Book sent by his Wish Coordinator. Shortly after, he met with his volunteer wish granters, who helped Caiden to decide what he wanted his wish to be. They landed on going to Walt Disney World® Resort.
We were so excited as a family to be able to share this experience with Caiden. Although Caiden is our Heart Warrior, his condition affects our whole family daily.
“We were so excited as a family to be able to share this experience with Caiden,” Jamie shares. “Although Caiden is our Heart Warrior, his condition affects our whole family daily, including his sisters, Jenna and Rylee. All of our lives revolve around Caid and his special heart. I wanted this to be memorable for everyone. We worked with Make-A-Wish to plan for all the things Caiden wanted to see and do. Everything was organized and totally geared not only to Caiden but to our family! We were also given information on local hospitals and Caiden’s medical necessities were discussed in depth. No stone was left unturned. Traveling with a medically fragile child is worrisome, but I felt confident after talking with Caiden’s doctors and Make-A-Wish representatives that this was going to be a safe and positive adventure.”
Jamie believes that their time at Walt Disney World left a lasting impact on Caiden. Even though he has physical limitations other kids don’t face, it didn’t stop him from enjoying his trip. She believes his wish experience allowed him to feel ‘normal’ and that the experience opened his thinking to be able to do anything he wants to do. Jamie felt her family growing closer on their wish trip as well. She says that they were all able to leave life behind and laugh and giggle without care.
There are so many medically fragile children that need this experience. Caiden has used his condition to educate others and raise funds various organizations, now including Make-A-Wish Iowa.
“There are so many medically fragile children that need this experience,” Jamie explains. Caiden has used his condition to educate others and raise funds various organizations, now including Make-A-Wish Iowa. He also gives presentations at his school about congenital heart disease, and in 2018, he started Wear Red Wednesday in his school district in recognition of National Heart Month. His mom stresses how important fundraisers like Jolly Holiday Lights are in giving critically ill children a once-in-a-lifetime experience. “Caiden’s story is just one story that represents thousands that deserve this happy experience,” Jamie says. “Please support Make-A-Wish freely!”