“We are home from the hospital! Our daughter’s heart is fixed,” the blog post says.
While I am glad that the child has been released from the hospital and is on the way to recovery, you need to understand something: A heart defect is never completely “fixed.” It requires lifelong care – even if you have a “minor” defect, such as an Atrial Septal Defect (ASD).
Even if a defective heart can function correctly through surgery, it is still defective – it is not the same as a normal cardiac organ. It’s not as strong, blood flows in strange directions, and there are probably structural problems. Even with a heart transplant, the patient still has to take anti-rejection medication.
As the person grows and ages, so does their heart. Repairs done at an early age can wear out and need to be done again. Here’s an article about a Ventricular Septal Defect (VSD) repair done by catheter rather than traditional surgery, but that isn’t what I want you to see. Read the fourth paragraph:
After many years, the patch that was used to correct the defect began to tear and needed to be repaired.
Ut-oh. So if you have a heart defect, you need to take care of yourself – forever. The first thing you should do is read the Bethesda 32 Report. Every year, the American College of Cardiology (ACC) holds a meeting in Bethesda, Maryland, to focus on one important issue. The discussion of the 32nd meeting was centered on the care of adults with heart defects. The Adult Congenital Heart Association (ACHA) has an information page here; the full text can be found here. The full text link has an option to print the report as a .pdf file (It’s long!) or page down a little for a phone number to order a copy from the American College of Cardiology. I don’t know if there is a cost; I downloaded and printed the .pdf.
The ACC has classed all heart defects into one of three groups: Simple, Moderate, and Complex. Those of us with Simple defects can usually be cared for in the general medical community; Moderate and Complex defects need to be seen at an Adult Congenital Heart Defect clinic periodically. (My defect, Tricuspid Atresia, is considered Complex.) We could also need to take special precautions during non-cardiac surgery and dental appointments, and make various other adjustments to our lives.
90%+ of all children having Congenital Heart Surgery will live to adulthood, and there is no reason they can’t have full lives. But we need to realize that we have to take extra steps to take care of ourselves.
Then we can go conquer the world!