Every year, 100,000 babies don't make it to their first birthday because of CHD.
chd awareness

Meet our Heart Warrior of the Week… Ezra Cameron Alofa Stevenson!  His parents describes him as energetic, friendly, determined, silly and strong! It was by happenstance that Ezra was diagnosed in-utero at 22-weeks gestation. After a California Prenatal Screening test showed a marker for spina bifida being higher than normal, Ezra’s mom was sent for a level two ultrasound. They found nothing wrong with his spine but they noticed an abnormality in his heart and he was diagnosed with complete atrioventricular canal defect (CAVC). Ezra was born on October 17th, 2014, and since that day he has undergone two open-heart surgeries to repair his perfectly imperfect heart. 

The first open-heart surgery was to repair the CAVC defect by putting in a shunt to separate the valves and redirect the blood flow in one direction, which is how a normal heart operates. An echocardiogram was performed four days post-op to look at the repair. This was when doctors noticed that the patch had come undone, so a second open-heart surgery was performed to repair the faulty patch and they were able to repair the valves even more to help reduce blood flow leakage as well. There is a potential that he will have to undergo another surgery in his 20’s if his leakage worsens over time.

CHD support

Throughout his battle with CHD, Ezra has spent about a month in the hospital and has to take a medication to regulate his blood pressure and leaky valves. Thankfully his valve regurgitation is mild, so he may be able to come off it in the future, but doctors are unsure if and when that will happen. It is suggested that he doesn’t play exceedingly physical contact sports like football, but other than that, Ezra doesn’t face any restrictions and should go on to live a full and normal life. 

When asked about the stresses and worries that come along with being a Heart Family, Ezra’s Mom, Mayra, said the following:

It was really stressful before Ezra had his surgery. He is our firstborn so we were really nervous at the thought of our little boy having to undergo an open-heart surgery at such a young and fragile age. We have faced some financial hurdles which only adds to the stress at a time when all you can focus on is getting your baby healthy.

Mayra describes Ezra as a joy and inspiration to their entire family, she says:

His strength and fearlessness inspires me. I am usually the one holding back, but he has taught me that it’s okay to take risks and that life is too short to be afraid. I admire his strength, to be six months old and undergo two open-heart surgeries within a week, only to be smiling and trying to talk a week later is truly remarkable. It was such a shock to see his amazing recovery and I admire that so much. He continues to rise after each fall with more determination to be happy and full of life.

We love you, Cheeks! We are so thankful you chose us as your parents and are excited to watch you grow into a pleasant little man! Enjoy the life, son!

About Ezra's Defect

Complete Atrioventricular Canal Defect

CAVC defect

Complete atrioventricular canal (CAVC) defect is a large hole in center of the heart affecting all four chambers that would normally be divided. In a normal heart, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood coming in from the rest of the body. A CAVC allows the blood to mix, preventing the chambers and valves from properly routing the blood to each station of circulation.

CAVC is a very common type of heart defect in children with Down syndrome (20% of infants with Down syndrome also have CAVC, and 45% of infants with both Down syndrome and a form of CHD have CAVC), but the cause and correlation is unknown.  Symptoms include fast or labored breathing, trouble feeding, and slowed growth. High pressure may occur in the blood vessels within the lungs because more blood is being pumped there. Over time, this causes permanent damage to the lung’s blood vessels. Symptoms may not occur until the child is several weeks old but can be present at birth.

Sources: heart.org

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