We had never heard of CHARGE syndrome before my daughter’s birth in 2021 (like many of us!). We were terrified of what her future looked like and did not know how to parent a disabled child. 2.5 years later, Bria is the absolute sunshine of our entire family. She is the youngest of four and adored by her sisters. When she was born the first sign something was not right was her breathing – she was transported to a higher level NICU with suspected choanal atresia. Due to that and the appearance of her ears, they immediately starting the tests to rule out CHARGE syndrome. We didn’t get the official results for months but we knew immediately. In her 4.5 month nicu stay she had 7 surgeries – four choanal atresia repairs, open heart and gtube/nissan. Hours after her open heart surgery at 6 weeks old she went into cardiac arrest in front of us. Since her NICU discharge she has had two more choanal atresia repairs and the drool procedure. She is now a sweet, funny, bright toddler with the biggest personality. She is learning to walk with her gait trainer, learning to talk despite her hearing loss, and learning to eat by mouth. She is tiny but mighty!!
What would you like to tell other people about CHARGE syndrome?
Individuals with CHARGE syndrome are some of the most resilient and amazing people. They have to work harder to do nearly everything that comes naturally to others. Yet they do it. Over and over again. They do the things they should not be able to. Because they are determined and work incredibly hard. CHARGE syndrome has given me a new appreciation on life. It’s made me see disabilities differently. It’s made me more compassionate and understanding. Children with CHARGE syndrome may look different. They may walk, talk or eat differently. They may have lots of equipment. But they are also children. Amazing beautiful unique children who want to have a childhood like everyone else! -Katie, Bria’s Mom
