Today starts a very important day for our family, it is Congenital Heart Disease awareness month. Wear red to spread awareness. Why is awareness so important? Because CHD affects 1 in 100 people which makes it more prevalent than any other childhood disease. There is no cure and often times it goes undetected until it is a big problem.
There is little funding for research on CHD. This makes me sad. There has been HUGE advances in CHD in the past years. When we were in the hospital our nurses would tell us stories of people being completely blue due to their heart. They would tell us that not too long ago, they did not have the technology to fix babies hearts. And even sadder, babies with Down syndrome were often the last, if at all, to get their hearts fixed. Wow, I could not imagine my life without Lydia.
I realize it, everyone wants your attention, everyone wants to create awareness, everyone thinks their cause is more important than the next. It is what is close to you. I had no clue about CHD until they diagnosed Lydia prenatally. We were one of the blessed ones that they found her defect before hand. Not every family is that blessed. It is a long road for many. We walked the halls of the CICU and saw tiny little babies on ECMO (a heart and lung machine) fighting for their lives. We heard the cries of families realizing that their little one would never come home. We talked with families who were basically waiting for someone to die so their little one could get a new heart. And then once that heart was in place, it requires a lifetime of medicine and check ups.
Although, AV Canal is a fairly common defect, since there is an artificial valve and wall, there could potentially be problems down the road. This requires her to be monitored yearly with Echos (pretty non-invasive) and EKGs. While it is not always poking and prodding, there are many other risks that she faces because of this. This is something that she will live with for her entire life. There is NO CURE.
Yes, this is close to our hearts because Lydia has it. I am not asking for anything other than to make yourself aware. Knowing gives you power. Chances are, at sometime in your lifetime someone you know personally will be born with CHD. Or it may be someone you meet who has already been affect by CHD.
There is no known cause why children are born with CHD. It is said that often times before families know they are pregnant, their little one's heart is already formed with CHD. Yes, there are surgeries that can correct the defect, sometimes, but because it is not made as it was designed to, there are often complications and problems.
So, I will get off my soap box. I hope that I created some awareness for you about CHD. It is important to me because it affects our families and I have seen how it can rip families apart. Help create awareness so people understand just how prevalent it is and how it affects families, and that it does need some funding.
I also have to say that I was so touched because Lydia's sisters school is all decked out in red today. How awesome that is to know that their school supports our family so loudly. We are so blessed to have so many people who back us and support us. Thank you!