Introduction

We have now known that our little man, Hunter will be born with a very severe and rare heart defect known as Tetralogy of Fallot for about 2 weeks. Upon finding this information out, I did like any person would do, and started searching the internet for as much knowledge, experiences, and recommendations as I possibly could get on this condition.
While I was able to find a lot of information regarding the condition itself, I was surprised at the lack of support I found for parents dealing with this. I found I had a million questions that I couldn’t find answers to that the Doctors didn’t have answers to and they are revolved around one large question.
What does being a parent to a child of Tetralogy of Fallot look like? What can we expect in the next year, 5 years, and beyond?
The answer to this was surprisingly lacking. There was all the normal medical advice, but where were the details from actual parents about their concerns or experiences. Where are the actual accounts detailing to me what it was like for them during these time periods? There were a few here or there, but most of them were not very detailed. Most only hit the highlights and didn’t give me a good play by play about what life for my husband and myself might be like. Due to that, hopefully one day someone can stumble upon this and it will be helpful to them. Now I know every situation is different, and so please prior to taking anything I say in any of my posts as “medical advice” please, please, please speak with your Doctor and get their opinion for your situation. Please just consider this blog as a way to know you are not alone, and to get an idea of what possibly might be to come.
Please feel free to follow along on our little guys journey, feel free to reach out for support, and please check back often for updates!