Grant L.
Age: 12 Years | 22q Deletion Syndrome
Born with Little Squeak and Mighty Will!
- Name: Caden C.
- Condition(s): 22q Deletion Syndrome, Absent Pulmonary Valve, Tetralogy of Fallot
- Age at Treatment: Birth
- Age Today: 17 Years
Caden’s first visit to Nationwide Children’s Hospital was when I was 5 months pregnant. In utero, he was diagnosed with Deletion22q syndrome. This syndrome is known to cause a multitude of defects, facial deformities, immunity issues, learning deficiencies and more. At the time of his birth he had a serious heart defect called Tetralogy of Fallot with absent Pulmonary Valve. He was sent to Nationwide NICU on the day of his birth. I was a seasoned mom by the time Caden was born but taking care of a special needs baby was new for me.
Caden’s nurses on the cardiology floor were so patient, trying to teach me how to handle the Bradley’s and the feeding tube. His first open heart surgery was when he was 4 weeks old at 4 pounds. To put it in perspective, his heart was the size of his little fist, the size of a quarter. He came through the surgery like a trooper but had some scary times in the PICU. We had two other small children at home, so it was necessary for us to travel back to our home in the evenings. Even though it was difficult our nurses comforted us throughout the process.
We knew that Caden was always in the best, most skillful, caring hands. This was only the beginning for Caden and the complications from his syndrome. Over the next 11 years, he went on to have open-heart surgeries, multiple heart catherization’s, immunology deficiencies, dental issues, eye surgery, learning deficiencies and more MRI’s and echocardiograms than I can keep track of. Caden’s last open heart surgery was on Aug 2014 when our wonderful surgeon Dr. Mark Galantowicz replaced his pulmonary valve. Caden had significant “white coat syndrome” and he was extremely afraid of the anesthesia mask. To make Caden feel more secure the anesthesiologist carried him to the OR room in his arms. Caden has done well since that last procedure but as he gets older and bigger he will need to have the conduit/valve replaced. He continues to be followed by a wonderful team of specialists and clinicians at the 22q Center at Nationwide Children’s who oversee all of Caden’s special needs. Now that Caden is older it’s more about dealing with his learning and psychological issues. I am beyond proud to work for Big Lots who invested in the new Big Lots Behavioral Health center where Caden’s next journey will be as a patient in this new state of the art facility. We felt so blessed that Richard H Gilchrist chose to see Caden for his psychological care.
Caden will always be small for his age due to his syndrome but he has a big spirit that can’t be stopped. He knows that no matter what lies ahead he can beat it. This beautiful boy has endured more medical procedures in his 11 years than most people deal with in their whole life. He’s an inspiration to me and teaches me each day that no matter how big life’s challenges are, if you have faith you will overcome them. Nationwide Children’s Hospital has been with us since the very beginning. I can’t say enough about Nationwide Children’s, their staff, team members, specialists, nurses, and everyone that has directly and indirectly been a part of my child’s success. My family and our community are beyond fortunate to have this hospital right in our very own backyard!
Learn more about the partnership between Nationwide Children’s and Big Lots, here.
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