Empowering you or your child
If you are a parent of a child with a congenital heart defect, or maybe you are the one with the defect, the best thing you can do to keep yourself or your child healthy concerning the defect is to know what the defect is! Not only the name of it, but also structurally and functionally what is wrong with the heart!
Why Should You Know and Understand Your Defect
The reasons you need to know what is going on with you include knowing how to care for yourself, knowing what questions to ask your practitioner, knowing what signs and symptoms are normal, minor or possibly severe.
Just like people without a defect, knowing how the heart normally functions is critical. A few years back, I was at a round table discussion on exercise and CHD. Some of the participants stated that whenever they had to do a stress test, they were fine when the treadmill was flat, but as soon as the incline started, they got short of breath. I was a bit stunned and not sure how to respond at first. Increase demand for oxygen and thus increased breathing rate is a typical response of the cardiovascular system to increases in intensity. It is normal and healthy. If you do not understand that, how can you know what to expect when you start exercising?
Before a surgery , during a pre-op meeting, I was speaking with the PA. She answered all my questions and then said, “I’m amazed that parents only ever ask me, how big the scar will be.” I told her, they probably do not even understand enough about what is going on to even ask a question.” If you don’t know anything about the defect, how can you ask a question?
Symptoms You May Experience
Ever felt a run of a fib, SVT or vtach? Probably. By now, you probably know what is normal and not for you. What is causing those runs? Is there anything you can do to impact them? Meditate, breathe, drink decaf, take your meds? Is it safe to exercise with those kinds of symptoms? Do they ever cause you anxiety? What resources are available to you to help you with these symptoms? Ever been short of breath while at rest? Had lips that turn blue or hands that get cold? Why does that happen? Electrical and “plumbing” issues are two things that result from your defect. Which is more prominent in your defect and in your stage of life?
There are many resources available to you to learn more. Start with the Adult Congenital Heart Association. Here is a video that explains blood flow in Tetralogy of Fallot. You can find other videos on defects at this website.
What types of questions do you have about your defect?
When we were told about our son with his coarctation of the aorta artery we had no idea what to ask nor did we know anything about it… Luckily we had an amazing cardiologist that helped us through the process answering all the questions that we had and even answered questions that we didn’t even think of… We were newly parents and didn’t know what to do… I do wish that there were more sites that helped parents understand what everything ment. Now 5 years down the road here we are with a happy healthy young man that has been through alot and only 5 years old
Yes! It must have been shocking to hear. So glad you found the right doctor. Just remember, in his eyes, he is normal. His life is how it is. He is not different. He is not struggling. It can be difficult for others to understand, but the best thing you can do for him is to keep him in proper care and let him be a kid! 🙂 Good luck!