Feb. 8 is National Congenital Heart Lobby day. Though sometimes hereditary, 35 different congenital heart defects generally are not a result of any human action. Rather, the fetus' heart does not properly fuse together during gestation.
One out of every 150 babies in the United States is born with a congenital heart defect, making it the No. 1 birth defect in the nation. Chances are you know someone who has a congenital heart defect. Does this statistic still seem distant and unreal? Let me put a face and name to it.
I was born with a congenital heart defect. Shocked?
I am one of a generation that cardiologists call 'miracle babies.' Developments in open heart surgery for infants and small children began in the 1970s, giving many children, including me, a chance at life that otherwise would not have otherwise been possible.
If it were not for a tiny patch over my ventricular septal defect'in layman's terms, a hole in the wall that separates the lower chambers of the heart'I would not be alive to write this column. While I am among the 95 percent of recovered congenital heart defect patients who lead normal lives, there still is a slim chance something could go fatally wrong.
Recently, doctors discovered several ailments ranging in severity from shortness of breath and irregular heart beats, to heart failure and even sudden death, can occur in former patients 20 years after corrective procedures took place. The onset of symptoms may be preventable if caught early. Yet, many of the young adults who had heart surgery in infancy do not recognize the precarious situation they place themselves in.
Feeling healthy, many of these former heart patients do not visit their cardiologists. Some do not even see a general practitioner regularly. While avoiding the doctor's office is commonplace for those young adults no longer covered by a parent's insurance, it is vital for young adults who were born with congenital heart defects to visit a health care professional at least on an annual basis. Though up-front costs of a doctor's visit might seem temporarily high, it is a small price to pay in comparison with costs of heart surgeries, hospitalizations or an untimely funeral.
In the course of preventative action, it is imperative to know the specific name of the defect and repair procedure, for that dictates the level of risk. Minor defects, such as holes between chambers, need only to see a general physician. For patients who were born with severe problems, dedicated care from a cardiologist specializing in congenital defects is necessary.
However, only 100 adult congenital heart defect specialists exist in the United States. This number must increase immediately. The need for treatment of adult complications is growing daily. An effort by the Washington Congenital Heart Center to sift through ancient medical files and contact former patients about their potential risks is a decent first step toward awareness.
But the effort of one hospital to catalog and contact former patients is not enough. Databases need to be created for current young heart patients, so their futures will not be jeopardized. Thus, the Adult Congenital Heart Association, a non-profit organization, has established National Congenital Heart Lobby Day, to ask Congress to fund an Adult Congenital Heart Disease Registry that could improve and lengthen the lives of congenital defect survivors.
For 24 hours this Wednesday, National Congenital Heart Lobby Day sheds light on a problem that for many looms large every dwindling day of their limited lives. Proactive behavior to promote personal health is certainly key, and is as simple as seeing a doctor. And while there is a push to concentrate more of the medical field toward aiding the aging baby boomers, the United States cannot forget the generation of miracle babies in between: A generation who, though a long ways from growing old, is still maturing into an unguarded horizon.
