Jan, born 1968My name is Jan and I was born in 1968. When I was first born the doctors did not know there was anything wrong with me. They told my parents I was blue because the cord had been wrapped around my neck. It took about three months before my parents knew there was something wrong.
I was sent to Boston Children's Hospital where they discovered that I had an Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD), Patent Ductus Arteriosus (PDA) and Tricuspid Atresia (TA).
My parents were given the good advice to "take her home and enjoy her" because they were told I would never live to be a year old. Their only other option was to give me this new procedure called the Fontan. The doctors told my mom and dad, flat out, that IF I survived the operating room I would never make it out of the recovery room alive. It was decided that there would be no operation and my parents took me home.
When I was approximately two years old my parents were told that I would never walk. If I did, that I would only make it a few steps and then stop and rest. To the amazement of both parents and doctors, I walked. And, not just a few steps at time.
As I got older, the Fontan was brought up a few more time but my parents took the wait and see approach. After a few years, the doctors adopted the same approached and stopped bringing it up. It's been that way ever since.
After graduating high school and going to college for a year, I held a job for thirteen years. I live on my own, I drive, and I do almost everything a normal adult does. I still have never had any repairs or surgeries.
A few years ago, I joined a few of the other online email support groups. Mostly all them consist of parents who have a child with a CHD. But I am finding it very helpful to share my story and hear all the stories about the children who are growing up with this. There have been so many wonderful surgical advances since I was a baby and it's amazing to hear how these children can do the things I never got to do.
Story by Jan, adult with CHD - Massachusetts
Justin, born 1999
Elizabeth, born 2003