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Brewster, New York

April 22, 2018

33%
66%
100%
$133,667
Our
Progress
$209,820
Our
Goal

 

Meet Diana Mauro

PHW18 - Diana

My name is Diana Mauro and I am a congenital heart defect survivor. Thank you for choosing me to be the 2018 Putnam Heart Walk Honoree. This past year is still a bit surreal for me as I went 29 years undiagnosed with a rare congenital heart defect. We often hear the word “congenital” and think “birth” or “baby.” While the term is used for an abnormality present at birth, there are many defects, such as my case, that may not be discovered until adulthood.

Growing up in Mahopac, NY, I was healthy, a straight-A student and lived a normal, happy life. I’m a medical malpractice attorney and no stranger to stress, long hours and the medical world. At the end of 2016, I began feeling light headed, faint and had low blood pressure. At first, I thought I was working out too hard or wasn’t drinking enough water; however, my symptoms persisted so I decided to go to my primary care physician. She detected a heart murmur and referred me to a cardiologist who discovered severe pressure in my right ventricle and an enlarged right ventricle. At that moment, my life changed forever.

I then underwent extensive testing and it was discovered that I had a rare congenital heart defect known as Scimitar Syndrome, or Partial Anomalous Pulmonary Venous Return. My family, boyfriend, friends and I were shocked to hear that I had gone my entire life undiagnosed with a congenital heart condition, especially one so rare. Approximately 1% of the population has a congenital heart defect and of that 1%, my diagnosis is less than 1%!

The tests indicated three of my pulmonary veins from my right lung were connected to the right side of my heart instead of the left side; and as such, my body was only receiving half the oxygenated blood it should. My body had adapted to this congenital defect and allowed me to live a normal life up until that point, but I would have started to become more and more symptomatic. The only option to correct this defect was open heart surgery to relocate the veins so that the oxygenated blood could circulate correctly. While it was an extremely difficult decision to make, and I was told the recovery would be equally challenging, I knew I would be able to get through it with my incredible support system. I am happy to report that on February 2, 2017, I underwent surgery and it was successful! It is also likely that I will not need any future surgeries!

I’m grateful for research and scientific advancements that make this type of surgery possible. I’m happy to support the American Heart Association whose funding of CHD research is second only to the Federal government. The AHA’s advocacy efforts also helped to pass the Pulse Oximetry Law for newborns, which can help identify CHD soon after birth.

While this past year was the most challenging year of my life, I am also very grateful and blessed to say that I am a congenital heart defect survivor. I am now left with a 6.5” scar on my chest to remind me daily how strong I am, what I have overcome and what is truly important in life. My diagnosis, surgery, cardiac rehabilitation and volunteer work has afforded me the opportunity to meet so many wonderful people, many of whom are survivors themselves, and give back to a community who has helped me when I needed it the most.

I hope my story will raise awareness for congenital defects in both children and adults, encourage people to seek medical attention when necessary, and give strength and hope to anyone going through a difficult time. To those families going through similar situations, I offer you words that helped me this past year: be strong, be brave, be fearless!