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

Although it’s not easy to hear, it’s important to know that loss is a harsh reality of CHD.  100,000 babies around the world won’t see their first birthday because of this disease.  That is why our warrior for day four of CHD Awareness Week is Heart Angel, Luca Wyatt DeLaGarza.  Luca’s parents, AJ and Megan, got some devastating news at their 19-week anatomy scan.  They learned that their baby boy had a heart condition known as hypoplastic left heart syndrome (HLHS), with a restricted atrial septum.  Although he would be born in critical condition, they wanted to give their son a fighting chance.  Luca came into the world on August 28th, 2014, and a fighter he was.  Despite the odds, Luca gave his parents seven beautiful days with him before he left this world on September 4th, 2014.  Megan and AJ say:

It was devastating to learn that Luca would be born critically and chronically ill, and that his outlook was grim.  But each doctor’s appointment thereafter would prove miraculous in some little way.  Luca would always show us something unexplainable by his doctors that suggested otherwise.  We knew the reality of his situation, but we held onto hope.  Even when our deepest fears were realized when Luca died, we still feel that same hope today, which we consider a gift of Luca’s life and legacy.  Forever just one week old. “I carry your heart; I carry it in my heart.” 

luca delagarza

They describe him as strong, breathtaking and relentless.  Luca’s Dad, AJ DeLaGarza, prepared this beautiful tribute to his son for our Second Annual Save the Heartbeat Gala where his mom, Megan, gave a moving speech that honored Luca beautifully.

About HLHS

With this condition, the entire left side of the heart (aorta, aortic valve, left ventricle, mitral valve) is underdeveloped, essentially the child is missing half of their heart.  In a healthy heart, the right side of the heart pumps oxygen-poor blood from the heart to the lungs.  The left side of the heart pumps oxygen-rich blood to the rest of the body.  When a baby is growing in a mother’s womb during pregnancy, there are two small openings between the left and right sides of the heart.  Normally, these openings will close a few days after birth.  In babies with HLHS, the underdeveloped left side of the heart cannot pump oxygen-rich blood to the body properly.  During the first few days of life with HLHS, the oxygen-rich blood bypasses the poorly functioning left side of the heart through the two openings. However, when these openings close, it becomes hard for oxygen-rich blood to get to the rest of the body.

If undiagnosed in utero, the child may seem healthy for the first few days of life before exhibiting side effects like rapid or strained breathing, trouble feeding and an ashy appearance.  Without treatment in the first days or weeks of life, this condition is usually fatal.  About 60,000-120,000 babies are born with HLHS every year.  Those who survive the complicated process of mending a heart with HLHS will require lifelong cardiology care.

Source: cdc.gov

hypoplastic left heart syndrome