Anybody with childhood ASD

All I've seen is people diagnosed with ASD as an adult. I was diagnosed as a child nearly 50 years ago. Anybody there who is still living?

ASD is congenital. It is often not discovered until adulthood. I had mine 45 years before having it closed.

Mine was so severe that I would have died in childhood. Mine was located at the valves and caused leakage of the valves. So far I have not seen anybody who was severely disabled in childhood because of ASD. I believe my mother had ASD that was never discovered and she died at 52. I also had a sister that never lived outside of an incubator for 13 days after birth. I was given to 21 years to live without surgery and 12 to have the surgery. I slept 20 hours a day prior to surgery including school. I had a teacher who saw that I was so tired she just let me sleep.

My defect was discovered in the womb in 1977. I had my surgery in the 80’s around the age of 5 or 6yrs old. Im now 35yrs and I lead a normal healthy life. Also had my daughter in 96 without any complications :slight_smile:

After my ASD was closed(but not the valve leak it caused) I continued to have frequent flus and other problems. I was diagnosed with chronic bronchitis and gout as a teenager. From what I've read these are both related to the severe ASD I had for 9.5 years. I also missed lots of time from work. fatigue was always a problem. I finally used garlic supplements which greatly improved my health. I was hospitalized for an arrhythmia after almost 31 years after the closure and began using medication for it. 9 years after that my heart would not slow from about 130 beats per minute and the arrhythmia medication was determined to be useless. finally, 41 years after the surgery, an ablation was needed to cut out the scar tissue left by the previous surgery as it had created its own beat causing the high beat count. I have not worked full-time now for 7 years(finances are tight), but seem to be healthier than I have ever been. After assuming that my life will be short, now I wonder if I have developed some kind of immunity from diseases that strike people as they get older since I had the bad blood, etc at younger ages and that younger age helped me fight off disease

yes, i was diagnosed as an infant, had surgery when i was 8 yrs old (but when they opened the chest they found other anomalies and fixed them,,the asd was very small and they were not concerned about it at the time.....then, i have no symptome until i'm about 40 and, start to get very short of breathe, extreme fatigue, and dizziness/light headedness. the cardiologist manages the symptoms through medications and does further testing. The symptoms continued to get worse and i was no longer able to, i had had a few TEE's (transesophageal echocardiograms) and they found the one hole which still looked small but they also found another, bigger hole- a sinus venosus asd. the smaller hole was closed through a catheter procedure but the second hole could not be closed that, i'm now scheduled to have open heart surgery next week to close the sinus venosus and, maybe tighten a valve which has become lax due to the, yes, i am alive and hope to be doing better soon...the cardiac surgeon did say that he doesn't see too many people my age because we don't tend to live this long without having the surgery. yuck!

I've been doing more researching on ASD. There are 3 types of ASD depending on where the hole is. The most common is near the top of the atrium between the left and right. The second type is in the middle and the third near the bottom where it can interfere with the functioning of the valves. The size of the hole also makes a difference. The last one is the most severe and is rare. That is what I had. Mine interfered and caused a murmur with the mitral valve. When I was a child, I was told I had 3 murmurs but have never found out where the third one is supposed to be. I also read that with the severe type that I had, when 2 valves are being interfered with, Downs Syndrome can result.I can't confirm this though. I was not initially diagnosed correctly at birth, but had a sister 4 years later who was not able to live outside an incubator. In my late 40's cysts were discovered in my brain that may have caused the ASD. One was an arachnoid cyst present from birth and benign. Taking anti-seizure medication for a year or so got rid of any symptoms. Because of the bad blood mixture for nine years, my lungs are sometimes compromised and the liver caused me to have gout as a teenager and still do. This is all due to ASD.

My mother had one fixed that she knew about since the age of 13. It was fixed when she was about 35 and she’s now 73 and going strong. I just found out about mine and had it closed at 43.