Every year, 100,000 babies don't make it to their first birthday because of CHD.
Andrew Michael Crivello | Heart Warrior of the Week

Today we are privileged to share the story of a beautiful Heart Angel and his father who has kept his memory alive through the biggest heartache a parent can ever face.  Save the Heartbeat Fam, meet Andrew and Anthony Crivello, your Heart Warrior of the Week and one amazing Heart Dad.

Like so many unsuspecting families before them, Anthony and his wife, Kaitlin, got devastating news at their 20-week ultrasound – their baby would be born with Hypoplastic Left Heart Syndrome (HLHS). Andrew was born on March 20th, 2018 and immediately showed the world what a fighter he was, undergoing his first open-heart surgery at just one week old. This surgery was the Norwood procedure and it is the first in a series of three surgeries that is commonly used to treat HLHS. Like the fighter he was, Andrew recovered from this surgery but had to undergo another one at 6 weeks.  This time surgeons repaired a failing valve in the right side of his heart. This repaired valve would soon fail again, but this time it was inoperable.

Andrew spent his all of his 2 short, but impactful months of life in the hospital before he passed away on May 20th, 2018.  Andrew’s dad, Anthony, speaks candidly about the trials and heartache his family faced and continues to face being a CHD family. He also shares the incredible story of how he has kept his son’s memory alive, all while spreading awareness for future families who will be affected by the terrible disease that took his son from him.

When Andrew was first diagnosed, I was worried about his quality of life. I did a lot of research on HLHS and found that a lot of people with it live relatively normal lives. But there was still a high mortality rate and that scared me more than anything. Another concern that we had as a family was the impact it would have on our oldest son, Noah. Having to watch his little brother under-go multiple surgeries would surely be devastating. Noah had to sacrifice his parent’s attention because we would be committed to fighting for Andrew. It was a tough reality that we went through during that period of our lives. Noah was mostly at home with family an hour and a half away while my wife and I would be with Andrew at the hospital.

When Andrew was born, I would often think about how much he had to overcome. I remember thinking that he was already a fighter the day he was born. He was already going to change the world. He was going to tell a story one day, and that inspired me. Since he has passed away, I feel that it is my job to tell his story. It almost feels like he is still here when I tell his story – a bittersweet feeling. He has inspired me to spread CHD awareness, to live the best life I can for him, and to build his legacy since he didn’t get the chance to do it himself. 

It was in the darkest and deepest period of his grief that Anthony committed to building his son’s legacy – embarking on a months-long journey that lead to him running the Los Angeles Marathon for Andrew, just 4 days after what would have been his first birthday. Throughout his training for the marathon, Anthony raised awareness for CHD and funding for Children’s Hospital Los Angeles where Andrew received a majority of his care. During the year it took him to prepare for the marathon, he would run up to 65 miles a week. For the month of February, which is American Heart Month, he dedicated each run to a different Heart Warrior and posted their story on social media to honor them and their families for everything that they have endured and continue to endure. Anthony says he felt like Andrew was with him every step of the way. Every step he took was for him.

I felt close to his memory when I would run for him. The marathon was horrible and amazing in so many ways. It was painful, but that is exactly what I was looking for as an outlet for my grief. Now that the marathon is over, I will continue to fight for Andrew’s legacy.

About Hypoplastic Left Heart Syndrome

Anatomy: In an HLHS heart, most of the structures of the left side of the heart are underdeveloped or missing altogether.  This includes the left atria, left ventricle, aorta and mitral valve. Basically, they are born with half a heart.

Complications: Because the mitral valve is very small or not developed at all, this prevents blood from entering the left ventricle. As a result, blood is diverted to the right atrium through an atrial septal defect (hole in the heart). Because the left-sided structures of the heart are essentially missing, the right ventricle collects both oxygen-rich blood from the lungs and oxygen-poor blood from the body. It is also responsible for pumping blood to both the lungs and the body. Since deoxygenated and oxygenated blood are mixing and being pumped to the body, HLHS babies are cyanotic (blue in color) and have low oxygen levels.

Symptoms: Rapid breathing or shortness of breath, rapid heartbeat or pounding heart, poor suckling and feeding, cold extremities, blue color of the skin, lips and nailbeds (cyanosis), overall body weakness.

Treatment: HLHS is treated with a three-part open-heart surgery called the Norwood, Glenn and Fontan procedures.  HLHS is sometimes treated with a heart transplant.

Prevalence: HLHS accounts for approximately 2-3% of all congenital heart defects. It occurs in 2-3 out of 10,000 live births worldwide.

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