At 34 I found out that I have 22q-11/vcfs. I never knew I had it, and no one in my family has it. I am now 37 going to school at Cal State Dominguize and working as a D.J. for KDHR.

I was born on April 15,1976 as a blue baby from the lack of oxygen to my brain, and my parents were scared. They didn’t know what was wrong with me. Where I was born (in Tuscon, Arizona at the Davis Monthen Air Force Base), they didn’t have the technology to care for me. So after my parents learned of my congenital heart defect– a severe tetralogy of fallot– they moved us all to California.

The first open heart surgery I had took place when I was only two-years-old. Because of my disease, I was held back in first grade due to a learning disability that was part of the heart condition. I also had ear surgery at age 3 and and mouth surgery at age 5. My next surgery was at age 13. Although I missed a lot of school and was constantly in and out of doctor’s offices, I could still run around just like all the other kids– even though shortness of breath came easily.

We thought maybe I was out of the woods by my teens, but then I suddenly had a grand mal seizure at 18. I was in a coma for a week and suffered brain damage.

Still, it wasn’t until age 34 that I finally got the answer I needed. I took the FSH Test which determined I had 22q-11/VCFS Deletion.

Now I go to the cardiologist once a year to get my heart examined. Even though I take 10 medications each day for everything from high blood pressure to thyroid control and sinus issues, I would tell any other patient with a similar issue to never let anyone tell you you can’t do something. Live life to the fullest, keep strong and push yourself. You can do anything you want.

2 thoughts on “Patient Diagnosed with Tetralogy of Fallot Later Gets 22q-11/vcfs Diagnosis”

  1. Trisha says:

    My 12 year old daughter has 22q11 (VCFS) as well. She was diagnosed the day of her open heart surgery, at 11 days old. We’re very grateful for the early diagnosis as it provided opportunities of early intervention and intensive therapy. Your story is inspirational as I often worry and wonder what kind of independence my daughter will have once she is an adult. Thank you!

  2. yvonne pierce says:

    Hi’ my name is Yvonne and its great to read your story, my son has 22q11 , he is 22, and don’t ever hear much how other adults are coping with 22q11 . thanks

Comments are closed.