share your story

This blog is a community for everyone to share their story. Everyone handling the weight of CHD has a story to tell and we want to know it. Please post your story in the comments section. If you have a blog and/or website and/or a post about your story, please add a link to that, too. And if you have any questions, concerns, or would even like to add your blog button to The Queen’s blog, we’d love to do that. Email the author at:

bentbunch4 (at) gmail (dot) com

Thanks!! : )

4 responses to “share your story

  1. Hi! My son Eli was born 10/27/10. The day he turned 10 weeks old he was diagnosed with Tricuspid Atresia, VSD, Transposition of the Great Vessels, and Coarction of the Aorta. He underwent his first surgery (modified Norwood) four days later. Within the next few months a Gtube was surgically placed and he had his second open heart surgery (hemi-Fontan). We go next Wednesday for a heart catheterization. His Fontan completion is expected to be in spring/summer of 2013. He will have a pacemaker placed at that time as well. “For a heart baby” he’s doing very well. Thank you for sharing your story and those of so many of us who are affected by CHD and have felt so overwhelmed and alone. Best of luck with your jouney!

    • Hi Jessica! My Son Asa shares a birthday with Eli just two years his senior in 2008. He is doing very well with Hlhs, dextrocardia, heterotaxy of his heart only… you can visit his page on fb.. Asa the Great Creator. Thank you Queen of Hearts for having this site! It is great to have the community connection.

  2. Thanks for writing this blog: its always good to find support with other CHD parents. You can check out my Nolan’s story at my blog http://hlhsdad.wordpress.com

  3. Jennifer Marchal

    Hi. My name is Jennifer. In 1976, I was diagnosed with Congenital Tretalogy of the Fallot with pulmonary artesia; also known as the “blue baby syndrome”. The doctors here in Louisville, refused to assist. Finally, in 1979 we were put in touch with Dr.Kirklin of U a B. There he performed 3 heart cats. He noticed that I had 3 tiny nubs where my left pulmonary artery is suppose to be. I also had extra capillaries. Following the three heart cats, I had my left brachial artery removed and placed into my heart. In 1982, I had my second heart surgery. Now, as I approach my 40th Birthday, my Blalock tausing shunt is beginning to slowly leak. I’ve had to change my diet and I continue not to drink, smoke or do drugs. Trying to currently get off caffeine.

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