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Dominic, the CHD Champion

To know why Dominic was a champion, first you must really know what CHD is. CHD was not his sole identity, but it was a significant part of his life and the reason he went to heaven sooner than he needed to.

I often get the question, what is CHD? CHD is an acronym for Congenital Heart Defect(s). CHDs are problems with the heart's structure that are present at birth. There's a huge misconception that CHDs can be "prevented" or "avoided" and I have discovered that it's actually not the case. Through information collected from cardiologists at Colorado Children's Hospital and perinatal specialists at Montana Perinatal Center, as well as research, it has been shown that CHDs are formed during the early stages of a mother's pregnancy, when the heart is forming (first trimester).

CHD's are the most common birth defects and occurs in almost 1% of all births. Nearly 40,000 infants in the U.S. are born with CHDs each year. Over 85% of babies born with a CHD will now live to at least 18 years of age. But children with severe forms of CHDs are less likely to reach adulthood.

Credit: The Children's Heart Foundation

Here is the crazy part. Congenital heart disease is approximately 60 times more prevalent than childhood cancer. And still continues to be underwhelming researched and talked about. I dream about a world that can cure CHD. Here is another misconception that I need to address: surgeries do not cure CHDs. There is no cure. There is yet enough research that can even provide parents with satisfying answers of why this happened to their children.

Carmelo and I had genetic testing done before he was born and after. To this day, all we know is that there were "3 misspellings in his DNA." It is inconclusive. There is "insufficient research that can help us know why it happened" and what this means for our future children. All we knew was, we had a 5-10% greater than the general population to have another heart baby. Crazy thing is, only 15-20% of all CHDs are related to known genetic conditions.

Dominic was a CHD Champion. He was a Heart Warrior. His fighting spirit was known to everyone who crossed paths with him. My son wasn't supposed to make it to term. When he did, I told my husband I wanted to take him to Disneyland for his 5th birthday. Because, it was a miracle for a heart baby with his prognosis make it to his first year, let alone his 5th.

Dominic had a lot of nicknames--including "little bood," "doctor bood," and my all time favorite was "Superman." He got this nickname from the little dimple on his chin and the battle scar on his chest, he proudly showed off.

Dominic, the CHD Champion, survived his first open heart surgery at 18 hours old. They would be stopping my newborn son's heart to perform a life-saving surgery on his little heart, so we can have him here for more time.

Those were the longest five hours of my life. When I was able to see him again, he was already hooked up to a ridiculous amount of machines. This was my first time seeing my son on ECMO. This machine was explained to us as the "heart/lung machine" that was used to circulate blood back into the bloodstream of our son. The purpose of this machine was to provide enough oxygen to Dominic while allowing him time for the lungs and heart to rest and heal.

Dominic was on ECMO for only 2 days. His doctors and nurses were impressed. HIs little personality began to shine through, as he began to show the doctors what he really hated, which was being intubated. Intubation is the process of inserting a tube through the mouth and into the airway, to assist with breathing. He absolutely hated it and would cry, which would make all his monitors go off. This is where we discovered that he liked to be swaddled SUPER tight and be padded on the side for comfort. We did this because we couldn't hold him yet.

Until we could. We waited 13 days to be able to hold our son, Dominic. Even when they took into his first open heart surgery, I couldn't hold my son, due to his fragile state and everything he was hooked up to. I remember thinking to myself "what if my son doesn't know me? what if he doesn't know I love him? what if he thinks I have abandoned him?" I remember fearing that he would forget who I was or we wouldn't connect because I couldn't breastfeed him. I couldn't thold him. I couldn't rock him.

All I could do was whisper in his ear that he was the most important person in my life and to remember what I told him before coming out "you have to fight now. When you can't come out, I can't protect you like I can right now when you are out. You have to fight. But you will never fight alone. Mommy and daddy are fighting with you every single step of the way." And WOW. Did Dominic Gabriel DeLeon fight EVERY SINGLE DAY.

Dominic is a CHD Champion. A Heart Warrior. A DeLeon. He did not lose his battle to CHD. He was a champion from the moment he was diagnosed, to his very last breath. Now, he is a beautiful angel with a flawless heart in heaven.

Today is the start of CHD week. February 17th to February 14th. Remember to cheer on all those warriors still fighting the good fight. And take a moment to remember those who are now angels, who fought against CHD until their very last breath.

Thank you for remembering my son. Thank you for honoring my son. Thank you for listening to our story.

With Love,

Raquel L. DeLeon




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