My childhood was marred with chronic lung infections, extreme fatigue and an inability to exercise or play sports. This was particularly hard on my self-esteem in high school and into college. I didn’t understand why I was so different from my athletic friends. Was my asthma really that bad? Or was I born with the “lazy” gene?
Six weeks after I graduated from USC, I was diagnosed with an Atrial Septal Defect – a hole in my heart. The diagnosis came as an incredible shock – a hole? In my heart! Isn’t this something babies suffer from? But when I started reading up on on the symptoms of ASDs, I felt as if I were reading my biography. This particular defect is a “hole” in the wall that separates the top two chambers of the heart, allowing oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. This caused my right heart and lungs to fill with excess blood, forcing my heart to pump twice as hard to circulate oxygen-rich blood in my body. No, I wasn’t lazy – I had just been misdiagnosed for 22 years.
I had surgery to mend the hole in my heart in November of 2012. I am happy to report that after a long year of recovery, I have never felt better. I finally have energy to live and pursue my passions!
However… I am extremely lucky that my defect was found when it was and no later. Doctors informed me that had my defect been found even three years from now, irreparable damage would have already been done to my heart. I would survive the surgery – but with lifelong complications. Had my defect continued to go undiagnosed, I would start having strokes in my late 20s, be on the heart transplant list by age 30 and dead of heart failure by age 35. Not a pretty picture, I much prefer the one of me and my mom below…
I don’t know why I was one of the 40,000 babies born each year in the U.S. with a heart defect, but I do know that I was one of the lucky ones. Each year approximately 4,000 of those babies will die before their first birthday according to It’s My Heart, a non-profit dedicated to providing support and educating families affected by CHD.
So how can we help? Many advocacy groups are pushing Congress to propose funding for much needed research. Did you know nearly twice as many children die from CHD than all forms of pediatric cancer combined – but funding for pediatric cancer is five times higher than funding for Congenital Heart Defects. Here is a sample letter you can submit to your local legislator.
As for me, I am going to keep spreading my story. In most cases, Congenital Heart Defects are easily treatable – if they are diagnosed that is!
Want to read more about my heart surgery journey? Check out my previous blogs:
I’ll leave you with a few sobering CHD facts provided by It’s My Heart:
- Congenital Heart Defects are the #1 birth defect worldwide
- Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
- Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
- Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
- The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
- The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
- Though research is ongoing, at least 35 defects have now been identified
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications