Imagine planning a vacation of a lifetime to Hawaii.  You scour Trip Advisor looking for great places to eat, you pack your shorts and flip flops, and maybe you even take surfing lessons.  On your flight you decide to catch a snooze and when you wake up, you’re not in Hawaii…instead you’re in Finland.  You’ve got the wrong clothes, the wrong guidebook, and you don’t even know the language.  Oh and to add to it: you can’t go back.

This is what it’s like to find out you have a child with a Congenital Heart Defect.  Some of you who are here have been in “Finland” for some time.  Some of you are just finding out you’re about to land here.  Wherever you are in that journey, just know that the best way to survive is to build relationships.

My name is Chris – aka the HLHS Dad – and I’m on this journey with you.  I live with my wife and 3 kids just outside Charlotte, NC.  When I’m not blogging or advocating for CHD research, I’m making memories with my kids, enjoying music, obsessing about coffee, and watching New York Yankees baseball.


Want to know one of my favorite (and most popular) blog posts?  Enjoy a good laugh and check out Heart Parent Bingo: https://hlhsdad.wordpress.com/2014/10/13/sometimes-you-just-need-a-laugh/



Nolan and his twin brother were born in December 2012.  He was diagnosed with HLHS in utero and had his first open-heart surgery at 7 days old.  His second heart surgery was at 7 months old.  He undergoes quite a bit of physical, occupational, speech, and feeding therapy, but he is one of the funniest, sweetest little nuggets you will ever meet.  Not a day goes by where I’m not amazed at how far he’s come: he’s my hero and an inspiration!

  1. Mr. Perez,
    I am the Cardiac Neurodevelopmental Program and Clinic Coordinator at Children’s Mercy Hospital in Kansas City, Mo. I work with families just like yours everyday. This is my passion. I am currently working on my PhD in Nursing through the University of Missouri, Kansas City, with a focus on the parenting stress factors and their potential effects on the neurodevelopment of their children with single ventricle pathophysiology, I have enjoyed your blog and would like to know if I could have your permission to quote parts of your writing in my review of literature and future thesis. At this moment, I am particularly interested in Nolan’s Care Map and your reasons and thoughts associated with it. You present a very “real” perspective that is better that anything I could pen in expressing the nature of your family’s experiences and resilience.

    Thanks for all you do!
    Becky Gregory, RN MSN CNOR

  2. Hey Chris,

    My name is Tony and Im in San Antonio TX and just found your blog last night. I have started reading form the earliest one I can find which Oct 2013 and Im currently on Feb. My wife and I are about to give birth to a little girl diagnosed with HLHS and I just wanted to thank you for taking the time to document your experiences. As you already know were we are in this stage, TERRIFIED, I truly thank you for giving an amazing insight to all this. I also know every case is different but I extremely happy to have found your blog.

    • Hey Tony! Thank you so much for reading and for your comment, it means so much to me to know that this blog is helping someone. Yes, this is a scary time but I know that you and your wife are going to find a strength you didn’t know you had. Wishing the very best for you guys and your little girl! If you ever want to ask more questions or chat feel free to shoot me an email chrisperez4@yahoo.com

  3. Hi Chris, i just wanted to say that reading your blog has helped me so much. I have a 3 year old daughter with HLHS and heterotaxy. She is doing great right now however her pending fontan surgery and its complications has left me in disbelief and anxiety. I have a question for you. Did the doctors ever mention that after the fontan surgery there is high chance of cirrhosis of the liver?

    • Hi Amanda, I’m so glad to hear that the blog has been helpful! Yes, the doctors have mentioned that they will monitor the liver post-fontan: it’s a pretty common thing to look at, from what I understand. All the best for your daughter’s upcoming Fontan

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