Do I need congenital heart disease revision surgery?
Q: I have a congenital heart defect and my initial surgery at 32 was complicated. I continue to have heart problems. At my last visit, my cardiologist said I would likely need another surgery. I’m afraid to have another procedure. How do I know if I need one, and why would a revision be needed?
A: Patients with moderate to high complexity congenital heart disease often undergo multiple interventions. Not knowing what condition you have, many patients with diagnoses such as tetralogy of Fallot, truncus arteriosus, certain aortic arch abnormalities, some cases of Ebstein anomaly and others, will need to have several surgical or catheter-based procedures that are typically palliative. These patients may require frequent follow-up visits to gauge the timing of any additional future intervention.
Some of the most common reasons patients might need a revision include repairs that involve conduits, baffles or bioprosthetic valves, as they tend to degenerate with time. These patients may require replacement or repair in the future, which may be surgical or catheter-based, such as balloon angioplasty, stenting, coiling or valve replacement. Other common complication after congenital cardiac surgery that may require an intervention include rhythm problems that may require a consultation with a cardiologist with expertise in rhythm problems.
It is important for patients with congenital heart disease to follow with a cardiologist with expertise in adult congenital heart disease. Congenital heart disease is now a board-certified subspecialty of cardiology, and physicians with this training would be most familiar with the sequelae and long-term complications of repaired congenital heart disease.
This would be best accomplished in a large, high-volume tertiary medical care center that would have a multidisciplinary team that can provide optimal care for all their medical needs. That means you would want to consider a health care facility that has an integrated team of cardiac surgeons, cardiac anesthesia specialists, geneticists, maternal fetal medicine experts, heart failure and transplant specialists, cardiac imaging specialists, interventional cardiologists, electrophysiologists and pulmonary hypertension specialists. Certain complications may affect congenital heart patients, but the symptoms are not obvious until these patients require advanced heart failure therapy or transplant.
Most patients Mayo Clinic follows with complex congenital heart disease have had multiple surgeries or interventions. Proceeding with an intervention is not taken lightly and such a decision needs to be individualized. Symptoms are important ways the body alerts you to an abnormality, and these symptoms should be assessed quickly. However, I would recommend not relying on symptoms, as some significant abnormalities may not cause obvious cardiac signs or symptoms early on. For example, patients with repaired tetralogy of Fallot may have severe pulmonary valve leakiness but feel well and not show any symptoms until the valve leakiness causes heart rhythm disturbances or significant dilation and dysfunction of the right ventricle. This damage can be irreversible.
It is an excellent idea to seek a second or additional opinion, and feel comfortable with your care team — and develop rapport and trust. Your congenital care team needs to be easily accessible for questions, education and follow-up. It is important for patients with congenital heart disease to be enlightened about their condition and the need of lifelong congenital cardiac follow-up.