Overview
The outlook for babies born with a heart defect has improved dramatically over the past 50 years. Today, nearly 1 million babies born with a significant heart defect will survive into adulthood to enjoy a fulfilling life. For those with minor defects, the heart may adapt and compensate for the abnormality in its structure. However, for the majority of patients these adaptations are not sustainable and treatment eventually is required at some point.
Treatments are generally categorized as either "corrective" or "palliative." Palliative treatments improve the functioning of the heart and aren't geared toward actually correcting the defect. Palliative treatments often revolve around noninvasive procedures like the long-term use of medications but may also entail catheterization or surgery. Corrective treatments seek to repair the defect through invasive procedures like heart catheterization or surgery.
Deciding when to undergo an invasive procedure involves balancing competing risks. As a general rule, physicians try to delay invasive treatment for as long as possible because all invasive procedures put the patient at some level of risk. Furthermore, many repairs are not permanent, so delaying treatment may eliminate the need for additional procedures over the course of a lifetime. On the other hand, if treatment is delayed too long, irreversible damage can occur. Overall, about half of the children requiring a surgical repair undergo surgery before age 2. And many of these individuals may undergo three or more operations or catheterizations over the course of their lives.
Generally the best place to seek out treatment is a medical center that specializes in congenital heart disease, usually called congenital heart centers or clinics. They tend to offer the most up-to-date treatments and be staffed by doctors who are highly experienced at performing those procedures. Before choosing a cardiologist or cardiac surgeon for a procedure, it is important to make sure that the doctor is experienced at treating the defect. The best way to evaluate surgeons' skill level is to ask how many times they've performed the procedure overall, and how many times they've done so within the last year. Good doctors will not be offended by these questions and should readily share answers. A second opinion can be very helpful as well, especially in situations in which the defect and proposed treatments are complex.
Still, no treatment or correction is a cure for congenital heart disease. No matter the treatment goals, lifelong management of the disease is required.
This section has more information on:
|
