So today is my birthday! I made it 31 one years. Earlier this week I received an email from a mother who is expecting ( at 31 week) her first child and at 20 weeks was diagnosed with Hypoplastic Right Heart and Pulmonary atresia with intact ventricular septum . So she asked one question to me. How do you do it for all these years? I replied one day at a time and on the really bad days one hour at a time.
She said that her cardiologist said "I still cant predict the future of what will happen to your child we certainly don't know what life will be in 30 years" then I found you.
We all know we are different and suffer different symptoms, some will make it some will not. I think the idea of knowing you are not alone, and there are others who have survived makes the day a bit better for us all.