About Us

After our son Jacob was diagnosed with a congenital heart defect, CHD – a coarctiation of the aorta, we came to learn about millions of people- adults and children living with CHDs. We saw and experienced first-hand that there is a real lack of medical research concerning how to best treat various types of CHDs, which are the most common type of birth defect found in newborn babies!

We created Jacob’s Heart Story in February 2015 as a way to share our experience and connect with others who are affected by CHDs. Jacob is a HUGE Spiderman fan and he will tell you in the words of Uncle Ben: “With great power comes great responsibility.” Because we are so grateful that Jacob’s CHD was discovered, we felt like we have a great responsibility to share our story and advocate for the entire CHD community.

We can be reached at Jacobsheartstory@gmail.com