Sharing the story of CHD

As stated in previous posts, this blog, among other things, seeks to be a bridge between the isolated person with Congenital Heart Disease and the community of support and information for those with CHD.  As I develop it I learn more and more about this community and am able to share bits of that knowledge here.  Today my research brought me to a few hard stories that I wish to share.

While so many strides have been made in research and CHD care, there is still a long way to go, which is why advocacy and research is so important.  I am fortunate to have few defects, but through this entire ordeal have learned how different every patient is. While some have shared defects, often other complications will be a part of individuals health that make their cases unique. There are so many complicated parts that go into treating each defect and so much doctors and researchers are still learning.  For those born with extremely complex cases the treatment is not always effective and the road to recovery is a steep uphill battle.

This reality has begun to stick as I have heard of deaths of fellow zipper sisters due to complications with birth, recovery, etc.  I have also learned about the harsh truth with two special cases of young boys who have recently passed because of their inability to receive the right kind of treatment soon enough. The most recent story is of "Holden the Tin Man" who was a two year old boy born with a severe CHD.  His parents knew before he was born that it would be a struggle to get his heart healthy, but pushed through.  They decided to nick name their son the Tin Man as they found an uplifting parallel with the character's search for a heart.  The family spent two years through surgeries and treatments to try and get their son healthy. They were praying for a heart transplant this year, but due to complications the Tin Man passed away on January 6th.  Its a very tough story, but as I looked through the photos on Holden's Facebook page I was inspired by him and his family's perseverance.  While times were tough, so many pictures were uploaded of Holden having fun and smiling while stuck to all those wires.  One photo even depicted the Tin Man calling his Ambulance his own personal car. He appeared to have such a strong, positive attitude in the face of his struggle it was incredible to see. Below I have included his video story told a year or two ago.

I share this not to scare or depress, but to explain the unfair truth of this disease.   Each CHDers story is different , but it is important that the larger story of CHD is shared. I have benefited and will continue to benefit from my surgeries.  Thankfully I am able to live life to the fullest, as many with CHD are.  Still, like any disease, there are those who did not have that opportunity, like the Tin Man.  For them I wish to share our story and broaden the CHD community so that attention can be given to the much needed research that will prolong and save the lives of those struggling to beat their CHD.