Mia’s Journey

written by: Claudia (mother)

My name is Mia Faye, and I am one year old. I am a sassy, silly, brave, and fierce little girl! My nickname is Tikitoos or Tiki for short. My family gave me this nickname because when I was a baby, they would sing this song (eye winker, nose smeller, mouth eater, chinny chopper, tiki tiki tiki too!) I would giggle at the Tiki tiki too part because when they’d say that part it tickled as they tapped on me. My other nickname is girlie pop! My favorite nurse on the Heart and Kidney Unit at Children’s National gave it to me when I was impatient.

I was born with a rare congenital heart defect called a right aortic arch. It occurs 1 in 1,000 people. I also have a vascular ring which is also rare and occurs 1 in 10,000 people. At my mom’s 20 week check up with me they discovered my heart condition and referred my mom to a Perinatal specialist and a fetal Cardiologist.

I was born on November 10th,2023 at 38weeks and 5 days at 10:54am weighing 6lbs 9oz. Everything went smoothly. I did not have any complications from my birth and didn’t need any NICU stays. I was able to go home after 2 days. During the first 6 months of my life. I had loud noisy breathing, and a lot of vomiting. The doctors thought I had reflux. But it was because the compression in my trachea and esophagus was causing me to have these symptoms. The doctors decided I needed a bronchoscopy/ laryngoscopy to see how compressed my Trachea/ Esophagus was. It was compressed at 55%. So, they decided to just watch me and my symptoms closely.

I was 6 months old at the zoo when my mommy noticed my breathing was off and I was gasping for air. My family decided I needed to go to the ER to be seen. The doctors told my mom I was in respiratory failure and needed surgery. I wasn’t allowed to go home until I had heart surgery. My insurance company had denied my surgery and said I was not sick enough. The whole team that was caring for me presented my case to a video conference with the insurance company and the insurance company finally approved my surgery to save my life.  My surgery was 5.5 hours long. Everything went smoothly and was successful except for having left vocal cord paralysis. After 2.5 weeks I was able to go home. Throughout the 2.5 weeks I always had a smile on my face no matter what. After about 4 months from being home my left vocal cord returned to normal.

My family is forever grateful for everything that the nurses, attending’s, fellows, interns, surgeons, and residents and more on the CICU and HKU at Children’s National.

Since my heart surgery one year ago my heart has been doing so much better. I get sick more frequently and every time I get sick, I always end up hospitalized and on oxygen from it. I was also recently diagnosed with Epilepsy in July.

The things I love: Jesus! He is the one that made me who I am with my special heart. My family. My family consists of my mom Claudia, my 3-year-old brother Dash, my grandma that I call Mom-Mom, and lastly my grandpa I call Poppy! My family has always been by my side through every inpatient and outpatient appointments. No matter how stressful all of this has been for them my family has stayed strong and positive for me and never gave up. I love going to school. My favorite thing to do there is art! I also love cats, ducks, books, baby dolls and Ms. Rachel. When I had my heart surgery in June, she made me feel better along with snuggles from my mommy.  Lastly, I love my heart because it makes me even more special than I already am.

I had my heart surgery in June of 2024 at Children’s National in DC, and it saved my life. My future consists of continuing getting once a year follow ups with my Cardiologist, remaining healthy, spreading awareness about congenital heart defects throughout my community, meeting all my milestones, traveling, making memories with my family, playing with my brother, making friends, and getting an education by going to college. Although I am little, I’m not sure what I want to be when I grow up yet.