Brianna, born 2000

Brianna was born with what we were told was an innocent heart murmur.  We followed up with a pediatric cardiologist two weeks later to make sure it had resolved itself.  It didn’t and she was diagnosed with Coarctation of the Aorta and Bicuspid Aortic Valve and was in critical condition. We were beyond scared and completely blindsided. She was admitted to the hospital for surgery and underwent her first surgery to repair her coarctation as she only had 20% blood flow to her lower body!  At two months old, she underwent an angioplasty but due to the tearing of this valve, she was diagnosed with Aortic Stenosis.

Brianna has PC visits every six months.  During a routine echocardiogram, a sub-aortic membrane was noted.  This beautiful little girl has already been so brave and now yet we are blindsided again.  Her cardiologist followed this mass closely and Brianna had a couple of angiograms.

 

In 2003 and 2008, Brianna underwent open heart surgery for removal of her sub-aortic membrane. During both procedures, the surgeon did some “cosmetic” surgery on her valve to preserve it until she grew stronger.  This foolish sub-aortic mass keeps growing back causing interruptions in Brianna’s blood flow. In return, she has a thickened left ventricle and a sub-aortic mass.

 

Brianna is now wearing a heart monitor for dizzy spells, shortness of breath and chest discomfort.  She has complained several times of what she calls, “My heart stops and I gasp for air.” In April of 2011 we have another PC appointment to see if Brianna is ready for an artificial aortic valve or just the removal of this sub-aortic membrane.

Story by Brianna’s mom, Carol - CONNECTICUT