Tag Archives: bicuspid aortic valve

Matters of the Heart

First, if you didn’t happen to catch the update I posted at the end of the last post, I’m sorry for leaving you hanging! All went well with Brax that day and he was back to himself in no time. I’ve also since that day received the results back from all the MRIs he had done.  His spinal MRIs all came back unremarkable, which is GREAT news! They did note scoliosis, which we already knew, but other than that everything looked good. There are no vertebral abnormalities and he does not have a tethered spinal cord. Yay! His Brain MRI showed a few changes, but I’m not quite sure about their significance yet.  The neurologist claims the report is exactly the same as his first, but it’s not.  We see him at the end of the month and I’ll talk to him more about it and see exactly what’s going on.  I don’t think it’s a cause for extreme worry or anything, but just need clarification.

Now that we have that out of the way…

Last week we also saw our cardiologist for Braxton’s 6-month check in.  Braxton has the Bicuspid Aortic Valve and Dilated Aortic Root so he needs to be followed closely to monitor any changes.  Overall, it was a pretty good visit.  Braxton is still stable and for having the abnormality, his heart is functioning exactly as it should. Always nice to get good news!!

Also, for the first time in 2 years, the doctor finally addressed my questions about what might happen long term.  The biggest concern is the aortic root.  That is the base of the largest vein in our body which leads to our heart and Braxton’s is quite enlarged.  Doc explained that his aortic root is just millimeters away from being comparable to the average adult.  The root has been enlarged since birth and it continues to get bigger, but is growing proportionately with him as he gets older so the doctor is not overly concerned just yet.  He wants to continue monitoring it closely because if it gets too enlarged, then we have serious issues.  If not monitored, the root could actually balloon up and burst, and if that happened there is really nothing that can be done.  He explained that even if that happened and the person was on the operating table with a surgeon right there nothing could be done to save the patient!  Pretty scary stuff.  Now I know why he never told me before!!

Now that we have a diagnosis and I’m in a place of acceptance, I think he could see that in my face and decided it was ok to tell me.  Admittedly, my heart skipped a beat as we talked, but I realized we were talking worst case scenario and we were far from that.  This is a situation we wouldn’t necessarily have to worry about until the root was double the size it is now, according to the doctor.  This is also something that would definitely affect his ability to play sports and other things as he gets older depending on the size of it as he grows.  Just further reason that he needs to go in for routine monitoring.

While, it is a little nerve-wracking to sit and listen to all of this, I’m grateful that he took the time to explain everything, and also ensure me that everything is ok right now.  Knowing about things like this now help me to prepare for later.  If something happened later it would be much more of a shock, but now that it’s in the back of mind I won’t be so blindsided.

As always, I remain hopeful.  Braxton is doing so well right now. He is truly thriving and making so much progress. The doctor was very pleased with our results and happy with the progress Braxton has made.  He reassured us that there is absolutely nothing to worry about right now with regard to Braxton’s heart.  I’m thankful for a doctor who is proactive and will continue to closely monitor our little man.  It’s always nice to find a professional who truly has the child’s best interests at heart.  We have been so blessed to have so many wonderful doctors and therapists always going above and beyond our expectations to take care of Braxton.

 

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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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