February is Heart Health Month

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Well, it seems that Braxton is just a ball of awareness! Apparently I missed an awareness week…oops, I’ll get them all eventually! As they are all very important in bringing awareness to the prevalence of issues many of us are not aware of until we or someone we know is diagnosed with them.  February is Heart Month and Feb 7 – 14th was Congenital Heart Defect Awareness Week. [Click the links to learn more.]

One of the many things Braxton was born with is a congenital heart defect.  Congenital means that it was present at birth, it’s not something that developed over time.  Braxton has a Bicuspid Aortic Valve and Dilated Aortic Root. The aortic valve allows oxygen-rich blood to flow from the heart to the aorta and prevents the blood from flowing back from the aorta and into the heart.  A normal heart has three valves that help with this process, Braxton’s heart only has two valves.  Here is an illustration from PubMed Health:

Bicuspid Aortic Valve

The dilated aortic root means that Braxton’s Aortic Root is slightly enlarged.  Future complications could include congestive heart failure, leakage of blood flow back into the heart, and narrowing of the valve which does not allow proper flow. Unfortunately, there is no way to prevent a congenital heart defect.  It is usually something that runs in the family.  And there is really no way to for sure know if your child will have an issue if it does run in the family.  From what I know, neither of our families has a bicuspid aortic valve, but my side of the family does have a history of other heart defects.  Based on the information from PubMed Health, often a bicuspid aortic valve can go undiagnosed because symptoms aren’t very severe, so it’s possible other family members may have been affected and we just don’t know.

On my side of the family, I was born with a slight heart murmur, but over time my heart grew and the murmur resolved.  My sisters, however, required surgery to repair their heart defect.  I have sisters who are twins, and they both had an Atrial Septal Defect (ASD) which is a hole in the wall that separates the the left and right chamber of the heart.  The hole allowed “good” and “bad” blood to mix which affected their growth and could potentially cause more severe issues.  At 6 years old, my sisters underwent back-to-back open heart surgery.  The surgery went well and they both made a full recovery.  They are now 24 years old and one has graduated from college and the other will do so this spring!

We were fortunate enough to have discovered Braxton’s heart defect at birth.  There were no signs before he was born.  We underwent all the normal ultrasounds and screenings.  Each time the doctor listened for the heart beat I asked him to make certain he didn’t hear a heart murmur because I knew I had one when I was born. We never heard anything wrong.  With the other issues he had at birth, an echocardiogram was done to check all the bases and the bicuspid aortic valve was found.  As a result, Braxton is followed closely by a cardiologist to monitor the development of his heart and make sure there will be no complications.  The report is that for having the defect, Braxton’s heart functions “normally” and his aortic root is still enlarged, and as time passes it continues to grow, but it is growing with Braxton proportionately so there is not yet cause for concern.  We aren’t sure if there ever will be, or what the long term implications are.  Our cardiologist has been pretty optimistic thus far, and when I asked about complications he told me that I shouldn’t worry about them, that I should focus on the fact that Braxton is doing just fine.  I can appreciate a doctor not freaking me out unnecessarily, so thanks, doc.  Braxton has an Echocardiogram (ECG) every 6 months so the cardiologist can make sure that everything is continuing to work as it should. His little heart is full of so much love and joy, so I will enjoy this worry-free time.

Congenital Heart Defects are extremely common and there are a wide range of conditions that can affect children.  I encourage you to visit the Congenital Heart Information Network to learn more about screening, resources, and support available for anyone with a congenital heart defect.

CHD doesn't have to be as grim as it sounds.  There is absolutely a possibility for a full and happy life!

CHD doesn’t have to be as grim as it sounds. There is absolutely a possibility for a full and happy life!

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Filed under Family, Kids and Family, Life, Special Needs Child

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