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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.

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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 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.

Jon

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.

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 1/16/2013 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.

By CaptainCardio on 1/16/2013 11:12 AM

A fall out of bed when I was four years old led to an ER visit to evaluate a potential concussion. That internist turned to my mother and said,” Tell me about your daughter's heart." And thus we had the first indication that I was put together a little differently.

I have Shone's syndrome - my coarcted aorta was repaired shortly after that ER visit, my bicuspid aortic semilunar valve isn't standard, but works well enough as do the too-small muscles on my mitral valve. I've also had valve-sparing aortic root replacement when my aortic dilation reached a point that the risks of rupture outweighed the risks of surgery.

By CaptainCardio on 1/16/2013 11:03 AM
I was born in May of 1988 in Pittsburgh, PA. At birth I was a "blue baby" who lacked oxygen and doctors recognized this as a cardiac concern. I was immediately transported to Children's Hospital of Pittsburgh and underwent open heart surgery at 6 days of age.
By CaptainCardio on 1/16/2013 10:57 AM
Bicuspid Aortic Valve - In 1988, at the age of 24, I had just taken my first job after graduating from Indiana University. I wasn’t feeling well, and made an appointment with a doctor whom I had never seen before. During that appointment, he asked about my murmur. I knew from all of the physicals I had for sports, school and summer camps that I did not have one...and I told him so. Well...over the next 10 years, I met with an Internal Medicine Doctor quarterly and with my Cardiologist yearly. By 1988, the murmur was cool enough to cause doctors to call other doctors over to listen to it. When asked if I had shortness of breath, I would say, “I think so as I really breathe hard after bicycling up big hills.” Needless to say, they always wrote “he claims to be asymptomatic.”
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.

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