Emerson - Our Miracle Boy Our son Emerson was born on April 30 th 2013, and he was our miracle boy right from the start. We were told after our first son that we would never have another baby due to some health issues I (Nicole) was facing. One year later we had the best surprise of our life, we were pregnant! Emerson’s delivery went well overall, and he was born at 8:08 am weighing in at 7 pounds 3 ounces. We were all so thrilled and excited to have our second son. His brother, Kayden, loved him from the start, and we were feeling truly blessed. A Murmur in Emerson’s Heart When Emerson was 11 weeks, we were sent to a cardiologist to check out a heart murmur. Kayden had one as well, but we were told it was nothing to be concerned about, and that it would eventually go away on its own. We were assuming it would be the same with Emerson, but it wasn’t. Emerson was born with two congenital heart defects, Bicuspid Aortic Valve (BAV) and Aortic Stenosis (AS). Bicuspid Aortic Valve means his aortic valve has only two leaflets instead of three. His aortic valve was formed this way during pregnancy. BAV is only present in 1-2% of the population; so many people are unaware of this defect and too often it may go undetected until it is too late. Aortic stenosis means the aortic valve is narrowed and not letting the blood flow out of his heart as easily as it should. Each of these defects on their own is manageable, but when both are present there are many more risks. Emerson may not be able to live as active a lifestyle, play sports, and sadly, keep up with his brother. With his heart working much harder to push blood through his body, he is and will be at increased risk of cardiac arrest as time goes on. This all coupled with serious respiratory issues, means a limited, possibly restrictive lifestyle. No Guarantees The next few years for Emerson will consist of many doctors’ appointments, ultrasounds, tests and inevitably, heart surgery. Some with these conditions will have numerous open heart surgeries, depending on the efficacy of the original procedure. During surgery, they will try and open the narrowing of his valve (the stenosis) to allow blood to pass through easier, thus easing the stress on his heart. However this is not a guarantee, nor a long term solution. Valve replacement will be inevitable with time, and hopefully allow him to lead a full, unrestricted lifestyle, but again, there are no guarantees. Raising Awareness and Funds Kyle and I have decided to start a fund raiser for Emerson, and for the Bicuspid Aortic Foundation. The Bicuspid Aortic Foundation focuses on raising awareness for this rare heart defect and above all else, it focuses on medical research and trying to find less invasive, more permanent and effective medical procedures. We are selling wrist bands in Emerson’s honor, they are $2 each. Many bake sales and 50/50 draws have taken place as well. We will be on our local communities’ TV station as well, to raise as much awareness as we can. Just the Beginning This is just the beginning for us, we plan to take this as far as we can and raise as much awareness as possible, not only for our son but every other child out there. The wrist bands are red and say BAV Awareness and have Emerson’s name in hearts on them. We would appreciate all the support we can get, and we truly thank all of you for taking the time to read this and support our family and the BAV Foundation. If you have any questions please don’t hesitate to contact us. Again thank you all so much. Nicole and Kyle, Emerson’s Mom & Dad

Emerson

Looking at him here, there is no hint of a problem inside the heart of this beautiful baby. His parents are bravely sharing him with the world in hopes of teaching us all what aortic stenosis and bicuspid aortic valve mean in the lives of a miracle boy and his family. If you would like to help Emerson and his family in their cause, you may contact the Foundation through our Facebook page, or Contact page. Please vist the medical references page for BAV in children for additional information.