Our son, Adam (now 2 years-old), was born with a major Congenital Heart Defect called Truncus Arteriosus. The defect is complicated but essentially means that he was born without a pulmonary artery (one of the two major blood vessels that extends from the heart). At just 4 days old Adam underwent a life-saving open heart procedure to repair his aortic valve, insert a human donor graft to act as his pulmonary artery and to give him hope. Since then he has endured several other procedures for his heart. Unfortunately, the pulmonary artery graft is not his own tissue so it will not grow with him. As such, Adam has many more surgeries and procedures in store for him, unless doctors and scientists are able to perform more research and develop better solutions. In three days our little Adam will undergo another open heart surgery to give him a new pulmonary graft and to replace his aortic valve, which is now deteriorating.
Here are just some of the facts about Congenital Heart Disease: Nearly two million children and adults are living with a congenital heart defect (CHD) in the United States. Each year approximately 40,000 babies are born with a CHD, making it the country’s #1 birth defect and the #1 cause of all infant-related deaths. Thanks to increases in survival rates, the number of adults living with a CHD rises by 5% each year, and adults with CHDs are living longer, fuller lives than ever before.
Congenital Heart Disease is personal to our family and we are involved in the fight against CHDs. In a couple of weeks, our family will participate in the 2014 Congenital Heart Walk of Greater Cincinnati. You too can help support the fight by either donating to The Children’s Heart Foundation or by registering to walk in a Congenital Heart Walk (supported by The Children’s Heart Foundation) near you. Since 1996, The Children’s Heart Foundation (CHF) has contributed $6.1 million toward 58 congenital heart defect research studies. CHF funds are solely used to fund CHD research. For Adam, CHD research means a pulmonary graft that will grow with his own tissue and a mechanical aortic valve that can function properly without the use of blood thinners. For all CHD survivors, research means a future filled with hope.