Retrun to 22q Stories

You are here

Aron was born to my 15 year old daughter in February 2001. During his first check-up, our doctor heard the murmur and sent us to be screened at Cook Children's Heart Clinic. They told us they needed us in Ft. Worth the very next day, and our world was forever changed. Open heart surgery was performed on May 22, 2001, when Aron was 3 months old. 

Diagnosis: Double-outlet right ventricle with doubly committed ventricular septal defect, secundum atrial septal defect, patent ductus arteriosus, left anterior descending coronary artery arising from the right coronary artery, right aortic arch.

His heart was repaired with his own heart tissue. He's never needed another heart surgery. Last week we had our annual check-up and Dr. Allander, who was there when he had surgery, was the doctor who saw Aron and he told him, "if I hadn't been there myself, I wouldn't think you ever had heart surgery, it's healed so well!" 

Aron is our miracle baby, he would not have lived without that life-saving surgery. He's had the pharyngeal flap surgery, multiple dental procedures (still ongoing), ear tubes, speech therapy, pneumonia, a broken arm and the same collar bone twice, some normal boy stuff. Aron was diagnosed with DiGeorge, aka, Velo-Cardio-Facial Syndrome in August 2006, at Cook Children's Medical Center in Ft. Worth, with the FISH test. ADHD is part of life, and possibly somatic symptom disorder. Aron is in the 8th grade, and has help from the SE department. His grades are not very good this six weeks, but he hasn't been feeling well and missed several days. He has a posse of friends that come over every day after school to eat us out of snacks and Gatorade. He loves the social aspect of school, but that's about it. He loves music, and writes songs. He likes to write stories and has notebooks full of them. Aron is quite the photogenic young man, and likes me to take his picture for his Instagram. He is our whole world. He's very sweet, loving and affectionate, as long as the boys aren't looking! :)

Latest News

Upcoming Event

Spread the Word