Our son, Miles, was born with congenital heart disease and had two heart surgeries before he was even two years old. Miles is currently thriving, but will undergo another open heart surgery in the next year or so. Here's our story:
When I was six months pregnant, we heard news that no parent wants to hear - there was something wrong with our son's heart. We quickly switched up our medical team and birth hospital to allow our son the best chance at life.
After Miles was born, he was transported to Cincinnati Children's Hospital's cardiac ICU where he was officially diagnosed with Shone's Complex - a combination of five left-sided congenital heart defects. He was born with coarctation of the aorta (think of how a kink in a hose blocks water, but apply that to the main artery carrying blood supply to someone's lower extremities), a hole in his heart, a bicuspid aortic valve (typical aortic valves have three leaflets that open and close to allow blood to flow through... his has only two), and a parachute mitral valve (the way the mitral valve is attached to his ventricular wall is misshapen).
He had surgery through his left side at nine days old to repair his coarctation and then had open heart surgery at 18 months to remove a membrane that had formed below his aortic valve thanks to all the turbulent blood flow in his left ventricle.
After years of annual visits and good news, this past September we got the news that Miles's aortic valve is starting to block blood flow and that we'll be looking at another open heart surgery in the next year or so.
This news is a stark reminder that CHD is a lifelong disease with no cure - only palliative procedures. We are fundraising in hopes that research can continue to progress and that within Miles's lifetime, there will be a cure for CHD.
