September is Children's Cardiomyopathy Awareness Month and the time to raise awareness of pediatric cardiomyopathy, a chronic and potentially life-threatening heart disease. Join me and Team CCF during the entire month of September as I Walk for Cure to support children with cardiomyopathy and their families.
My son, Ronan, was diagnosed in utero with severe bi-ventricle heart dysfunction (due to cardiomyopathy - a chronic disease of the heart muscle that affects the heart’s ability to pump blood.) at 32 weeks gestation. The doctors were not very optimistic and told us that if he made it to term, he would need a heart transplant. God answered our prayers and Ronan was born via scheduled c-section on the 19th of February at 39 weeks. We were so happy that he was here, but knew that our journey was far from over. Ronan ended up being born very sick, his heart had made it through delivery, but it was now “barely pumping”. Doctors were prepped to put him on a type of life support machine, but at the last minute, one of the doctors made the call to “medically paralyze” him instead to take some strain off of his heart and see if it would help it pump again. Over the course of the next several days, numerous ups and downs and everyone we know (and many we don’t) praying for our baby- Ronan’s heart began to regain function! Fast forward a few weeks later—we packed up our things and took our baby HOME! Something that we truly did not know would ever happen - let alone 3 weeks after birth! Ronan had made a miraculous recovery! He now visits his doctors every three months for outpatient appointments to make sure things are still functioning as they should. He continues to do very well. We are hopeful that his heart will continue to stay stable and get better and stronger.