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.

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Express Yourself

Author: Created: 11/19/2012 1:22 PM

We know that you have a lot to say about living with congenital heart disease. To share your story (in 500 words or less) with other members of the ACHA community, click here. Thank you in advance!


By CaptainCardio on 3/22/2013 1:29 PM

We all have once-in-a-lifetime experiences—right? Our birth and death for starters. But even though they’re once-in-a-lifetime to ourselves, these are common to everybody.

What makes me so special? Not much—other than having the dubious distinction of surviving not just one open heart surgery, but four.

My name is Bob and I'm not fat, I never smoked and I always got plenty of exercise—yet, in a span of three decades I underwent four separate open heart surgeries. Unprecedented? They were to me.

By CaptainCardio on 3/21/2013 4:40 PM
I am a 37 year old healthy female who was recently diagnosed with ASD. Very scary considering my father just passed 6 months ago after getting his mitral valve replaced. My cardiologist just referred me to a surgeon and I'm waiting for treatment options. Since I'm new to all of this, I'm nervous and in the process of gathering information.
By CaptainCardio on 3/11/2013 3:51 PM
Unlike so many with a CHD, I lived a healthy active childhood. I was always outside climbing trees and running around, took dance lessons for 14 years, and began training to swim competitively in high school. At the age of 16 I was undergoing a routine physical to obtain clearance to swim with the high school team. My new physician listened to my heart for an unusually long time and then asked, "Has anyone ever told you that you have a heart murmur?"
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 2/25/2013 2:09 PM
I am 33 years old and had my first open-heart surgery at 4 days old, to widen my aorta. I had another OHS at age 8 to patch a small hole. My third OHS came at 14 when I had my mitral valve replaced. In 2009, OHS number four to replace my aortic valve (both valves were mechanical) and I also had a portion of my aorta replaced.
By CaptainCardio on 2/25/2013 2:06 PM
I was born with Total Anomalous Pulmonary Venous Return (TAPVR). I was rushed to Children's Memorial Hospital hours after birth. I've had 5 open heart surgeries total – first when I was 10 hours old, then when I was 6 months old, 8 years old, 13 years old and 17 years old. Children's in Chicago was like my 2nd home and now sadly I'm too old, so I go to Northwestern.
By CaptainCardio on 2/12/2013 9:56 AM
I was born with coarctation of the aorta and patent ductus (PDA) in 1959. I only know the beginning story from my mom, who is a very persistent nurse. She says that she always knew there was something wrong with me but doctors would not listen until I was very sick. Luckily they finally found someone who did help them and then I had surgery.
By CaptainCardio on 2/7/2013 4:08 PM
Hi my name is Kimberly and I was born in August 1980 in Hollywood Florida. I was born with Transposition of the Great Arteries. At the age of 4 months I had to get a cardiac cath done and during the test I ended up having a stroke. It led me to have learning disabilities.


By CaptainCardio on 2/6/2013 4:15 PM
I was born in 1971 with Pulmonary Atresia, a small ASD, and a small right ventricle. I had my first open heart surgery the day after I was born. During that surgery they made a hole between the right ventricle and the pulmonary arteries. My second surgery was just before I turned 4. They enlarged the original hole and put a stitch in my ASD to close that up.
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 1/29/2013 8:58 AM
I was born as blue as the clouds in November of 1984. I was born with tricuspid atresia. I had two shunts before I was 6 months. I got a Fontan at the Mayo clinic when I was 4. As a result of that surgery my SA node was damaged so a pacemaker was put in when I was 5.
By CaptainCardio on 1/28/2013 11:55 AM
I am a 35 year old single adult woman with CHD. On my second day of life a nurse heard a murmur and my story began. By 3 weeks old I was in congestive heart failure. I can't even imagine what that was like for my parents. I have Shone's syndrome plus other anomalies. I have a coarctation of the aorta, subvalvar aortic stenosis, parachute mitral valve, left superior vena cava, and all types of arrhythmias.
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.
By CaptainCardio on 1/22/2013 3:57 PM
When I was born in April of 1988, the doctor's at Boston Children's Hospital discovered that I was born with Pulmonary Atresia. A procedure had to be done immediately to fix the hole in my heart the day after my birth. After a successful first operation performed by Dr. Lock, I was able to go home to begin my new life. At 18 months, we were told that I was in need of another operation to permanently fix that hole.
By CaptainCardio on 1/22/2013 1:41 PM
My story begins 22 years ago in March, 1990 in Augusta, GA where I was born to two loving and supportive parents. Soon after I was born (hours maybe) my parents were given the news that I had a serious heart condition known as Hypoplastic Left-Heart Syndrome (HLHS). They had never heard of it before and were told that it was very serious and that if I did not get a transplant or surgery, I would probably die. Because of their strong faith, my parents trusted that the Lord would allow me to live. I was put on the transplant list and was on it for only a few days before they were told they’d have to make the decision to go through with what was known back then as a very risky series of operations.
By CaptainCardio on 1/18/2013 4:10 PM
In April 1989, I was born with hypoplastic left heart syndrome, transposition of the great vessel, septal defect and coarctation of the aorta. I had my first heart surgery at five days old at Children’s Healthcare of Atlanta at Egleston. I was only given a fifty/fifty chance of survival. This was the first of a two staged surgery. I would have to have another one around two years old. I came home after ten days but had to be fed through a tube placed in my nose.


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 1/16/2013 2:28 PM
“She’ll never live.” These were the first words a new mother heard when her child was born. The baby was blue, weighed less than 4 pounds and had a heart “problem.” That child was me. As a child, I never understood exactly what condition I had or its severity. My pediatrician only noted that I had a heart “murmur,” my heart sounding like galloping horses. I knew that I got tired easily during gym class and couldn’t run as fast as everyone else. Sports were not a part of my world, but that was fine by me. I focused on brains, not brawn—and excelled.
By CaptainCardio on 1/16/2013 2:19 PM
Last year, I had to have open heart surgery for the second time in life. My first was when I was a day old, and 30 years later I was told that I need a valve replacement. I never thought that I would need another surgery in my life. I was also told that I had an ascending aorta which at this time doesn't need to be fixed. This is so hard to deal with knowing that I have to get this done in the future and it’s been seven months since my surgery for the valve replacement. I hope that once I'm done with cardiac rehab I can try go back to my life.
By CaptainCardio on 1/16/2013 11:15 AM

Hello! I am a 57-year-old female living in Ohio with CC-TGA. I have recently "met" Tina by phone and e-mail, but that was my first experience with meeting someone who had the same defect as me. I was happy to see Craig post his story and like Tina, there are a few of us out there past 40 and 50 (almost 60!) and still thriving!

I was diagnosed when I was 7 days old. I was also a blue baby, but miraculously have not had any surgeries or even a pacemaker. I, too, take a regimen of heart failure drugs and get checked by an Adult Congenital Specialist every 6 months with ECHO, heart monitor and blood work.

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