Growing Up With Congenital Heart Defects
Written by: Anna Jaworski
Within the past two decades, great advancements in medicine have meant that more children with congenital heart defects are growing up! New surgeries are being created for heart defects that were once fatal. Now children with heart defects are attending day care, going to school or college and joining the work force.
Yes, people with congenital heart defects are able to lead productive lives. Fifty years ago, if a child were born with a heart defect, the parents treated the child as a cripple and often allowed the child to just lay in bed all day long. Any exertion could cause the child to turn blue. Parents were told that their children would never grow up to have a family of their own. That is not the case today. Today children with congenital heart defects might attend the same school your children do. They go to local churches. They ride their bikes, roller blade and play some sports, just like any other child. They may not be able to play all sports (no contact sports for children with pacemakers), but they can participate in most childhood activities. Unless you see some of these children jumping into a pool without a shirt on, you might not even know they have had open-heart surgery.
Doctors have performed miracles on these children and given them a much better quality of life than their peers of yesteryear. Yet, it is not all smooth sailing for these heart heroes. Having a severe congenital heart defect means, at a minimum, annual cardiology appointments. For some people with severe congenital heart defects, having a special heart means life-long special care. Most adults with congenital heart defects (ACHD'ers) need some kind of medication (common medications include digoxin, Coumadin, Captopril and aspirin, to name a few). Some ACHD'ers need pacemakers due to arrhythmias attributable to scar tissue from earlier open-heart surgeries. They always have to take medication before dental procedures and are more at risk for serious consequences when sick. One never knows if an infection could travel to the heart and cause severe damage.
Many people think that once a baby or child has heart surgery they are "cured." Some think that children simply need to outgrow their problems.While minor holes in the heart can close on their own, children with severe congenital heart defects requiring open-heart surgery are never really "cured." Many of these children have unusual hearts which have been reconstructed and do not resemble a normal heart at all. Somehow surgeons can go into the heart and force blood to flow into man-made vessels so that the body is still nourished, even if it is not done in a typical manner. The risk of complications is great and the future of these reconstructed hearts is only now being discovered as many of these children reach adulthood.
Pediatric cardiology is still a relatively new field. Unlike adults with acquired heart disease, there are few doctors available to help the child born with a congenital heart defect. Babies and children see pediatric cardiologists once the heart defect is diagnosed and throughout childhood, but what happens once the child grows up?
Some cardiologists have little to no experience dealing with congenital heart defects. This means that when the child with a CHD grows up, they must continue to see their pediatric cardiologist or, if they are lucky, an adult cardiologist who specializes in the treatment of adults with CHD.
There is almost no support for the adult with a congenital heart defect. In fact, most adults with congenital heart defects do not even know another person born with a heart defect. There is a growing number of ACHD'ers, however, who are meeting because of the wonders of the Internet. At places like the Congenital Heart Disease Information and Resource website, teens and adults can meet in the teen lounge, or join a listserv especially for them. There are bulletin boards on the Internet with posts from adults with congenital heart defects. A new organization, The Adult Congenital Heart Association has now been formed as well.
Although there are many uncertainties in the life of an adult with congenital heart defects, the chances are higher than ever before that these adults can lead a normal life. Naturally there are unique situations that the ACHD'er must face, but advances in medical technology are helping to reduce the seriousness of many of these problems. Clearly there needs to be more research done in the area of pediatric cardiology so that there is less uncertainty in the future. With the help of the Internet, parents of children with congenital heart defects and ACHD'ers can find the support and information they so desperately need.
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