About the Author

My name is Steve; I live in rural South Carolina and I was born with a Congenital Heart Defect (CHD) known as Tricuspid Atresia. CHD’s are the most common birth defect, affecting 1 out of 125 live births. Tricuspid Atresia is one of the rarer defects — only about 1 person in 10,000 has it. I have survived 3 heart surgeries, outlived a pacemaker, and I am doing well.

I love the Braves and baseball in general, construct my own action figures, and enjoy 1980’s music. I am also a member of the Adult Congenital Heart Association (ACHA). I support the ACHA in their effort to improve the quality of life for Adult Congenital Heart Defect patients, helping out whenever I can.

Sit back and enjoy my ramblings, and feel free to leave a comment. If you want to reach me personally, I’m at Wildcat3@gmail.com. With luck, we can all share a laugh or two, and I can disprove a few stereotypes.

Let’s talk about it! If you think your Heart Defect support group would like to have an Adult Survivor of a Congenital Heart Defect speak to them,  I’d love to be considered. If your CHD Support/Advocacy group is holding a weekend event – a conference, symposium, or get together for heart families – I am willing to attend and speak, at no cost to the organizers. I will also bring my laptop and “livebog the event to my readers worldwide. Drop me a note at Wildcat3@gmail.com and we’ll discuss it!

19 Responses to “About the Author”

  1. Wendy Says:

    Hi,
    I just stumbled upon your blog and I wanted to say thanks. My 1 year old son has CHD’s (CoArctation of the Aorta, VSD, ASD, BiCuspid Aortic Valve). And it’s so wonderful to hear from an ADULT who lives with CHD’s and to hear how wonderful you are doing and your positive outlook on life. I’ve enjoyed your posts and found them informative. We’re in Canada and we’ve been lucky to deal with The Hospital for Sick Children in Toronto who have taken good care of my son. Anyways, thank you for the information you provide and your sense of humour about it all.
    Cheers
    Wendy

  2. Mark Says:

    Hi – I also just stumbled upon your blog. Great resource for adults with CHD, but also a great resource (and provider of hope) for parents of kids with CHD. In two days I will be bringing my three year old son in for his three month follow up after the Fontan procedure. He has Tricuspid Atresia with ASD and VSD. It’s also uplifting to experience your sense of humour about it!

  3. Amanda Says:

    Hi! Thank you for blogging about the efforts in Washington DC. My son Liam is 5 (almost 6) and has tricuspid atresia + TGA, so he had the full-blown Norwood at birth (like your video) – I think it’s worse to watch when you know they did that to your kid! I’m reading Walk on Water right now, and it’s a little close to home.

    Thanks for your blog and for sharing your stories. It’s a bit like a road map for parents of children like you – especially the hypoplasts as you and I both know how rare they are.

    Heart hugs & good luck with everything!
    Amanda Adams
    founder http://www.hypoplasticrighthearts.org

    PS – we hope to send a delegation next year. :)

  4. Let’s go to the carnival! « Adventures of a Funky Heart! Says:

    [...] you to think about participating in our first Blog Carnival! Just drop me a note (My e-mail is in THIS LINK) and tell me that you are interested. There’s no [...]

  5. Pam Owens Says:

    Hi Steve, I just found your site through Palmetto Hearts. We live in SC, too — in the upstate. Our son, Zach was born with SV, TGA, and PS. He is now almost 3 and waiting for his 3rd surgery, the fontan, which will be in 2 or 3 years. He is an incredible little boy who is full of life and personality.
    It is so good to connect with others who are living with CHD. As someone else commented, I am grategul for the hope that I feel as I read your blog. Keep posting!
    Blessings,
    Pam Owens

  6. sonnet Says:

    Hii Steve
    Hope you are OK
    Thanks for referring to my link in post of the weight of your heart

  7. Katie Schwartz Says:

    Hi There Steve;

    I’m sorry you were born with such a rare heart defect. I gotta tell you, your spirit is incredibly uplifting. The title of your blog is hysterical.

    You are quite the survivor indeed! Congratulations.

    Take Care and be well,
    Katie

  8. Melody Says:

    It was so great to read your blog. We are currently trying to adopt a little girl with your same condition and i have a bunch of questions. i got your blog address on the holt adoption blog by a girl called leap of faith. I would love to tell her that I’am pursuing one of the girls she has been advocating for and i would love to talk with you more. Could you tell me how old you were when you had your surgeries and what if any complications you had.

    melody

  9. Amanda (Liam's Mom) Says:

    Hi, Melody. We actually have a whole support group for HRH parents/survivors/spouses, and we have had at least two join who adopted their children. You are very welcome to join our group.

    Kindest regards,
    Amanda

  10. Introducing Helen Taussig, M.D. « Adventures of a Funky Heart! Says:

    [...] Helen Taussig, M.D. By Steve If you’ve checked out the ABOUT THE AUTHOR page in the blogroll, you’ll see that I construct my own action figures. I’m not that [...]

  11. Deepti Says:

    Hi, I just Googled something about CHD and ‘normal’ life and came across this blog. I find it amazng that most people act like CHD patients CAN’T live a normal life with independence! We’re just like any other people who occasionally turn blue and who have slightly less stamina than in general – intellignece-wise, and as people, we’re no different.

    I was born with TA too, and had my Fontan 20 years after you had your Glenn. My Fontan was special because (as per my knowledge, which MAY be grossly exaggerated by people who are proud of me) I’m the first Indian patient to ever receive one of those, and secondly, because my valve was reconstructed using my own tissue and not from a pig heart…haha. So now I’m almost 24. I’ve done everything to keep up with my own peers, and am known to be fiercely independent. I’ve finished my post graduation and am living alone in a city away from home, doing a 9 to 6 job that I (admittedly) hate.
    To be honest, the only thing I don’t do is have much physical activity.

  12. SurgeXperiences 311 « Vagus Surgicalis Says:

    [...] be hosted by Steve, an adult congenital health defect survivor! Read more about him here. He blogs over at Adventures of a Funky Heart, definitely worth checking out. You can submit your [...]

  13. Danae Says:

    Hi Steve,

    It’s so good to find this website! I am an undergrad student doing research for HLHS (Hypoplastic Left Heart Syndrome), which involves the Glenn shunt. That is SO awesome that you not only do you have an original Glenn shunt, but that your surgery was performed at thee Johns Hopkins! Thank you for creating a blog for others going through similar situations to be informed. I am very passionate about pursuing a career in pediatric cardiothoracic surgery. I am currently applying to medical school, so I have a long way to go. It was encouraging reading your story!

    Best,
    Danae

  14. SurgeXperiences 312 to be hosted at Adventures of a Funky Heart « SurgeXperiences Says:

    [...] SurgeXperiences 312 to be hosted at Adventures of a Funky Heart 2009 December 11 by Jeffrey SurgeXperiences 312 will be hosted at Adventures of a Funky Heart on 13 Dec 2009. Adventures of a Funky Heart is a blog kept by Steve, an adult congenital heart defect survivor. Read more about him here. [...]

  15. Penny Says:

    Hi, I just started read your blog afther I see Paul Cardall post about your blog. I been follow that family for a few months now. My husband born a blue baby too D-TGA. I was wonder how old you are? My husband health is going down hill the last year or so been even hard for are family. But I love hear from other CHD familys that are going thought this also. I post a video link of my husband that I post to the web July 22, 2008. In the last year my husband has spent amost all holidays in the hosptial. How does your family cope with you when your sick? Thanks for any replay.

  16. Josh Says:

    Hey, just stumbled on your blog. It’s great. I had transposition of the greater vessels corrected by the mustard procedure. Today is my 33rd birthday and I have not had one problem since the surgery at age one. I live a normal, healthy life and am a father of 3. So those of you with little ones, just remember, there is hope.

  17. At Your Service « Adventures of a Funky Heart! Says:

    [...] me – for a speaking engagement or just to drop me an email –  you can find my address in the About the Author [...]

  18. Mitzi Says:

    Wow – it is so nice to read the journey of an adult who has lived with Tricuspid Atresia. My 18 month old son has Tricuspid Atresia w/ ventricular inversion, & TGA. He is doing amazing, better than we could have ever expected. Thank you for giving us hope for our son.

  19. Jillian Says:

    Hi Steve,

    Thanks for sharing your stories with those of us lucky enough to stumble across your blog. I am expecting a baby girl with HLHS in October and am looking for positive stories to keep me going. With all of the questions that I have and all of the medical terms and procedures that I am learning about, it is refreshing to see your words, which are understandable, encouraging, and open. Thanks so much for sharing.

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