Congenital Heart Disease In Adults- How To Change What You Can

The topic of Congenital Heart Disease In Adults is one we should talk about, because an estimated 1.6 million adults in the U.S. live with this condition, and the group is growing by 40-50 million people every year.

congenital heart disease

While Congenital Heart Disease is present at birth, it’s not necessarily hereditary, but it is acquired during fetal development.

Because Congenital heart defects are the most common of all birth defects, this past June U.S. News took an in-depth look at how the problem is affecting these children’s lives as adults.

Repairing a heart is a risky business, especially when the organ fails to develop properly in the womb. Abnormalities may be present, from major arteries that grow in the wrong place to heart chambers designed to pump, but don’t.


Congenital Heart Disease-Heart CirculationIt’s supposed to work like this:

1. The right atrium receives oxygen-poor blood from the body and pumps it to the right ventricle.

2. The right ventricle pumps the oxygen-poor blood to the lungs.

3. The left atrium receives oxygen-rich blood from the lungs and pumps it to the left ventricle. And so it goes.

Thank goodness for continuing research, procedures, imaging studies and large facilities with highly experienced surgeons. They make it possible for children with heart abnormalities to experience meaningful lives as adults.

The studies in June of this year showed that even with the most complex defects present with the congenital heart disease, kids are surviving far later into adulthood than they used to.

Unfortunately, however, what the studies also showed is that some young adults, believing they were cured after having surgery as kids, never followed up with continuing care by their cardiac specialists.

It can take decades and very serious emergency situations for these patients to reconnect with physicians with the cardiology expertise they’ll need throughout their lives.

congenital heart disease-ICDsSome of the problems arising from Congenital Heart Disease in adults include potentially life-threatening heart rhythms, requiring placement of an implantable cardioverter, heart valve repairs/replacements, as well as ultimately requiring open heart surgery.

And again, unfortunately, when these problems become major issues, insurance companies often deny coverage because the congenital heart disease is considered a pre-existing condition.

Yet, it’s unlikely anyone other than a cardiac specialist would notice that someone was having these issues. Which is why, follow up care, with any cardiac condition, no matter how long it’s been since you acquired it, is always necessary.

That cannot be stressed enough.

Some patients do not develop problems until they’re in their 40’s and 50’s. Some are even in their 70’s before complications occur.

Congenital Heart Disease in adults brings some unique needs which general cardiology practitioners may not be aware of them. For the best and most consistent follow-up care, a specialist is necessary. 

  • Modern surgical techniques can help someone survive the first phase of the disease, but they are considered “palliative,” which means they are designed to relieve some symptoms but do not offer a cure.

Most adults with Congenital Heart Disease will need cardiac evaluations at least once a year to identify problems before it’s too late to treat or repair them.

Nowadays, families are told that a congenital heart diagnosis means a lifetime of cardiac care.

Critical Treatment Choices

Parents of babies with congenital heart defects make treatment choices that have an enormous impact on their child’s health and survival. When these children grow up, seeking care from appropriate centers and clinicians can be just as critical as the initial treatment decisions.

An estimated 30 percent or more of adults with Congenital Heart Disease who need ongoing care aren’t getting it.

But the problem goes beyond that.

Of primary concern is that these unique patients are being seen by people who have absolutely no expertise, education or training in adult congenital heart disease.

While the physicians they see mean well and want the best for the patient, they’re just not equipped to give the right care to patients with highly complex heart conditions.

The physicians providing follow-up care with congenital heart disease in adults must understand subtle differences in their approach to treatment.

  • These may include the timing of any surgical procedures, the medications required for the specific problem, the recommendations for physical activity and much more.
Lastly, but equally important, is the patient’s ability to come to terms with the psychological issues of Congenital Heart Disease in adults.

congenital heart disease-ribbon


To that end, if you have this conditions, I’d strongly recommend reaching out to the Adult Congenital Heart Association to find support and learn how to advocate for your own care as adults.





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