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What I wish I’d known when my son was diagnosed with a congenital heart defect

February 15, 2013

Written by Trey Flynn

My son Holden is 16 months old now. In those 16 months, he’s been operated on four times, he’s had two heart catheter procedures, and you can add a gaggle of other medical proddings and visits to that list. Despite all of that, Holden has walked away with an amazing smile as if nothing’s ever gotten to him.

Today, people often ask me what I wish I knew after learning about Holden’s heart defect. I jokingly respond, “the ins and outs of complex pediatric cardiothoracic surgery.” It’s an easy answer to a complex question, because if I honestly wanted to give them a true and 100% correct answer, I’d need a few hours of their lives.

My wife and I were so naïve at the time of his diagnosis; we were more caught up in the idea of having our first child to even know a congenital heart defect was a possibility. The news, while delivered carefully, grounded us to say the least.

When I think back, here's what I wish I'd known on that day of June of 2011:

Why Us? I think the thing that my wife and I struggled with the most in the beginning is the “why us?” question. Truth be told, in our case, like most, there really isn’t an answer for “why us?”. I like to believe it’s because someone, somewhere, knew we were a couple that was mentally and physically capable of handling this situation. The only thing I can tell you is that playing the “why us?” game isn’t the best way to go. We shelved it early, knowing that “why us?” only left us at the starting line. That doesn’t mean it hasn’t reentered our minds from time to time, but when it does, I look at the unbelievable child that I have and throw that question out the window.

Should I tell anyone? You’re going to need your family and friends. However, wait until you’re ready to tell people before spreading it around too much. It’s a very emotional time and sometimes answering the questions of an acquaintance from high school who saw your post on Facebook might be pushing the envelope a little too far. Start with close family, and work your way out.  Let them know how you feel, and how you want to feel going forward. When we approached our family and friends we told them what Holden was diagnosed with, and then explained that we didn’t want pity, only positive responses because that’s how we were approaching this. Our family and friends followed suit.

How should I prepare? If you’re fortunate enough to learn about the defect before your child is born, use the time to speak to the doctors, nurses, and other support staff who will be caring for your child. Visit the facilities. Talk to other families who have been there. (note: I’ll leave our contact at the bottom). Being familiar with your surroundings will only help in a time of great stress.

What is a good source of information? The internet is the greatest information tool in the world, but it has its limits. You have to be careful about whom you trust information from. Sources like the blog or the American Heart Association are excellent for medical information. Support groups like Mended Little Hearts and Precious Little Hearts of Central Florida are other great avenues for the emotional side of things. Just be careful about trusting an “online message board doctor” who seems to know the ins and outs of congenital heart defects while fronting with a profile picture something like Honey Boo Boo. In the end, the best information will be provided to you by your child’s doctors and nurses. They’re amazing people who have dedicated their lives to doing amazing things.

What should we do during surgery? By all means, anything BUT concentrating on the fact that your kid is in surgery. It’s a hard thing to do, and while I wish there was a way to fast forward through those intense hours, you’ll need something to distract you. Bring in cards, books, magazines, computers- whatever you think will keep your mind occupied. Trust me, I know that for a good portion of the time whatever is in front of you won’t matter, but you can act like it does.

Will we know what is going on with our child’s surgery? At Arnold Palmer Hospital, they did a great job of updating us as to what was going on. I’ve been told other hospitals all have various ways of keeping the parents up to date on what is going on in the Operating Room. This is one of those questions you should ask before surgery.

What about after surgery? As a parent, being there is always great for the kid. Remember, you need your time too. I’m not saying you shouldn’t be there, but allow yourself time away so that you can recharge and prepare for another day. The doctors, nurses, and support staff will always have an eye on your child. Oh, and don’t watch the monitors; that will drive you crazy!

What will our child’s life be like? Holden has been like any other infant/toddler I’ve ever seen. Despite spending almost two months of his life in the hospital, he’s always willing to find that one item in the room that you don’t want him playing with. You turn your back and he’s scooted away. He loves banging on the iPad, swinging on a swing, and most of all, swimming. While each kid is on a different timetable, I’ve had the privilege of meeting so many “cardiac kids” who amaze me with their abilities. There might be limitations, but I know in my case, I rarely notice them. I can’t stress enough, be prepared to be amazed!

Should I feel alone? Absolutely not. Statistics say about 1 in 100 children are born with some form of a congenital heart defect, making it the most common birth defect. All that aside, the leaps and bounds made in pediatric cardiology the last few decades have allowed more and more of these kids to thrive. Chances are you know someone who has a child with a CHD or an adult who themselves is a CHD survivor. There are thousands of people out there, each with their own wonderful stories.

Are there any stories of other CHD survivors? There are so many success stories these days. Max Page of the Little Darth Vader Super Bowl commercial most recently made the news.  My favorite is a girl named Anna Sage (view Anna's story here). I found her video about 24 hours before Holden’s first surgery, and it gave me that extra boost I needed. She’s an amazing girl!

What is the ultimate advice you have for a CHD parent? Be positive. It’s tougher than a can of nails at times, but when it comes to a congenital heart defect you don’t have a lot of things you can control. For my wife and me, keeping a positive attitude was our biggest weapon. While there were times where we could have easily broken, our positivity and trust in the health care professionals helped us through this.

Ultimately, there is nothing anyone can say that will completely relieve the stress and emotions that come with the news of your child’s heart defect, but I can’t stress enough-


To learn more about my son Holden’s journey, watch this video:

To contact me for more information, email me: [email protected]