We recently found out our son has a congenital heart defect called Hypoplastic Left Heart Syndrome. This means his left ventrical as well as other parts on his left side of his heart are too small and he will not be able to live outside the womb without having heart surgery. Once he is born he will have his first heart surgery before two weeks of age and will have to stay in the hospital for a while. Once he gets out he will constanly need to have his oxygen levels and weight monitored to make sure his heart is doing ok. Then he will have heart surgery again between 2 and 4 months of age. After his first two surgeries he will have to have constant check ups. Once baby Edgar is three years old he will have his third and hopefully last heart surgery. As long as all of his surgeries go well he will not have to have a heart transplant. This is one of the more serious heart defects out of all heart defects, it is not fixable but is managable. He will be born at Lucile Packard's Childrens Hospital at Stanford in Palo Alto, Ca. This is a four hour drive without any traffic. We will have to go there every 2-4 weeks until I am around 34/35 weeks pregnant then I will have to move there until his birth and until after his second surgery as there are no doctors in my area to monitor him between his first and second surgery. This means I will be living there for six months and have the expense of travel, housing, and meals while away from home. We are asking for any help possible so we can afford to pay for his medical care as well as living expenses and can still keep up on our bills we have now. I will not be working due to this and Edgar will be taking much time off work as well unpaid. Thank you in advance for your help, love, and prayers.
-Katherine, Edgar, and Baby Edgar Santos
Also, if we are lucky enough to raise enough money to help with our expenses and have anything that we don't use it will be donated back to other families in need of help with their children.