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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

These stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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By CaptainCardio on 4/11/2013 2:19 PM
In December 1989 doctors gave my parents the news that they could lose their child due to a medical ailment. Immediately after my birth I had cyanosis around my lips and fingernails. Physicians ran more tests and diagnosed me with tetralogy of Fallot. A cardiologist wanted to operate right away but my parents refused and went for a second opinion.
By CaptainCardio on 3/1/2013 2:17 PM
I am a 48 year old female born with tetralogy of Fallot. The doctors told my parents my life expectancy was 12 years old. My parents would not take that as fact so they were able to connect with a local agency for my cardiac care. I had "experimental" surgery performed at Shands Hospital in Florida in 1969 resulting in placement of a Waterston shunt. The surgery was a success and I have had a "normal" life of a child with a heart condition
By CaptainCardio on 2/6/2013 2:03 PM
My son, Jax and his twin were born in August. While Jax’s brother is medically perfect, Jax was diagnosed with a genetic disorder called Cat-Eye Syndrome or trisomy 22, and tetralogy of Fallot in my pregnancy. When the boys were born, Jax was transferred to the NICU at Children's National Medical Center.
By CaptainCardio on 1/24/2013 9:01 AM
My name is Karla; I am 28 years old and was born with Tetralogy of Fallot. I was a “blue baby,” and had my first open heart surgery at 9 months old. I was blessed with two boys, who are now 5 and 2, before needing my second open heart surgery in June 2012 for a pulmonary valve replacement.

Dan

By CaptainCardio on 1/18/2013 4:01 PM
In 1969 I was born with a hum-dinger of a condition: Tetralogy of Fallot along with a deviated septum AND transposition of the greater vessels. I had a Blalock shunt in 1971 and a Potts shunt in 1974. In 1986 I had open heart and a Fontan procedure.
By CaptainCardio on 1/15/2013 4:24 PM

I was born in South Dakota in 1961 with tetralogy of Fallot. My first heart procedure, a BT Shunt, was at a ripe age of 18 months at the Variety Club Heart Hospital in Minneapolis. After that surgery by Dr. Varco, I got along as best I could until 1969 when we returned to Minneapolis to have the ToF repaired.

I remember as a young boy trying to be involved in baseball with my friends and squatting in the outfield because I had figured out that seemed to help with shortness of breath. The ToF repair went very well and in short order I was running, and playing much like a "normal" kid. I would see a cardiologist occasionally while I was growing up, but for the most part I had no heart related concerns.

Jim

By CaptainCardio on 1/14/2013 4:46 PM
I was born in 1950 in Phoenix, Arizona with tetralogy of Fallot. Had a Blalock/Taussig shunt in 1953 at the University of California Hospital, Oakland. Grew up in Virginia Beach and Norfolk and was quite cyanotic in my grade school years. Had difficulty playing active games with kids and was very winded climbing stairs. I would walk a block, sit down for five minutes then walk another block.
By CaptainCardio on 1/9/2013 9:01 AM
My name is Michelle. I was born in April 1976 in Tucson Arizona. I was born lacking oxygen which caused me to be a blue baby. I was born with a congenital heart defect called tetralogy of Fallot. I have had three open heart surgeries. I moved out to California with my mom and dad because the hospital wasn’t equipped enough for my congenital heart defect. I had my first open heart surgery when I was 2 and ½ and the last one when I was 13.
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