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

Your Heart Warrior of the Week, Marc Mayer, was born on November 30th, 1984 and diagnosed with heterotaxy with a single atrium and single right ventricle, mitral atresia and pulmonary atresia just 13 days later. Marc describes himself as confident, positive, and smart. His Mom, Tracie, adds that he is courageous, strong-willed, intelligent and compassionate.

Throughout his 34-year journey with CHD, Marc has undergone 7 surgeries, including two Blalock-Taussig shunts, the Fontan, and multiple heart catheterizations, spending a combined total of about one year in the hospital. He will have to take medications to help his heart function for the rest of his life, but feels he lives a very restriction-free lifestyle.  Marc and his mother remain hopeful that he will not have to undergo anymore surgeries in the future.

Marc speaks about his experience living with CHD, saying the following:  

In the past, from the day I was born until the age of 16, there have been challenges, both physical and emotional. There was bullying in school due to my heart condition and racial discrimination as well. A lack of participation in normal everyday childhood life because of hospitalizations and restrictions in physical activities like sports led to my being treated differently by my peers. However, it seems that since about the age of 16, these problems have slowly disappeared.

It is not uncommon for people to ask me how I was able to master the first two decades of my life. It happens all the time at doctor visits when I walk into their office with a thick folder titled "healthcare," during my many long stays in the hospital, or just in conversations with acquaintances. For me there is always only one answer: "I have a bodyguard.” Many ask who my bodyguard is and there is only one answer to that question as well – God is my bodyguard. Today I can experience what I have so often longed for in my darkest nights – a life full of energy, self-confidence, passion for sports, music, travel, and spreading a positive message on to as many people as possible. Because life is hard; it leaves you physically, mentally, and emotionally scarred. But it is up to each one of us - whether we accept our destiny or emerge from it with new strength. The breathlessness I felt in the yard of the Children's Hospital in Boston might be the closest thing to a rebirth someone can experience. You may sometimes wonder, "Why has fate challenged me, of all people?" Quite simply - because you are the one who is strong enough to overcome such a hurdle. Always stay positive, look forward, and appreciate every moment of life. Believe in your bodyguard, and even more importantly, believe in yourself.

 

Tracie also detailed her experience as a Heart Mom, saying:

We faced extreme challenges.  When I was pregnant, I had just moved to Germany only three months previous and could not speak the language.  To my knowledge I had a normal pregnancy with regular prenatal check-ups, confirming everything was fine with my baby. Then to get the news that he was born with several heart defects was devastating. To this day, I still keep the fetal heart rate reading which showed his heart rate was steady, strong and normal. There was a constant battle with doctors who did not believe my son would or could survive; they told me that he was “incompatible with nature.” And then of course the challenge of dealing with all of Marc’s infections and the deep sadness I felt every time he was poked by a needle. It was also quite challenging for me as his mother, his primary caretaker, to instill within him the belief that he could move mountains if he wanted to, when I myself was filled with such abject fear.

Tracie adds that many things about son her son inspire her, but if she had to choose just one, she would say it’s his bravery that stands above the rest. She details hers and Marc’s journey with CHD in her book, Incompatible with Nature: A Mother’s Story.

September 10, 2018 by Lani O'Gorman

Comments

Christine Cantorna

Christine Cantorna said:

This gives me so much hopes as our son Riley sharing very similar diagnosis with Marc. Brought tears to my eyes.

Tracie Mayer

Tracie Mayer said:

Save the Heart, thank you for sharing out story. Christine, my Book, Incompatible with Nature–A Mother’s story is for all of us heart warrior Mamas And Dads just like you; be inspired and have hope!! If you’d like to reach out for a little more TLC feel free to do do and blessings to you and Riley and your family.

Melanie skulskie

Melanie skulskie said:

Very inspiring..God is in control..amen.🙏

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