Growing up with a CHD: The good, the bad, and the…*interesting*

By Sarah Clark

Part 1: First, the good news

I’m probably not very different from some of the younger parents who follow this blog. I’m a 31 year old living in Northeast Oklahoma with my husband of 6 years and our cat, Tawnya. We’re moving into our first house in about a month, and we’re looking forward to filling up our new bookshelves, setting up a whole-house wireless network, and starting a proper vegetable garden. I’m a librarian at a local university, and I spend my days keeping up with overdue notices, teaching information literacy classes, and helping our online students get the research help they need for their classes. I was born with Transposition of the Great Arteries, VSD, and PDA, all corrected by the time I was 18 months old. My husband Kevin is a software developer. We walk a few times a week (when we’re being good), and attempt to eat a reasonably healthy diet. We hang out with friends, spend too much time online, and could really stand to clean out the bedroom closet this weekend. All in all, we’re your typical middle class DINK couple, though perhaps a little geekier than most.

Just in case you missed the point of this recitation of our nice little life in suburbia, let me make it clear: I lead a normal, happy, reasonably healthy life, and as far as I can tell, my life is pretty typical of adults with my defect (the symptom-free survival rate at 30 years post-correction is over 80%, and most of us had Mustards or Sennings instead of the new and improved arterial switch procedure). I’ve had no physical complications to speak of, and I’ve accomplished most of the modest physical goals I’ve set for myself. My CHD is merely one of a laundry list of things that are notable about my life. I’ve led a generally happy life (with a few bumps in the road I’ll hit in part two), I’ve graduated bachelor’s and master’s programs with excellent grades, I studied in Scotland during my sophomore year of college, and I’m the first TGA that I know of to climb (a very small chunk of) the Great Wall of China. The most important thing I want to share is that most of those things didn’t happen in spite of my defect—in a very real way they happened because of it. Let me explain with a brief list of the benefits of being born with a congenital heart defect.

1. Immortality? What immortality? 24 hours after my mustard procedure, I managed to disconnect myself from the ventilator, coded, spent the next month in a drug-induced coma, and was expected to wake up with major brain damage. At two years old it looked like I might be developing pulmonary hypertension. Pretty much every CHD kid I knew well before the age of 4 died of their heart defect—I believe I went to my first funeral when I was about 5. I never believed I was immortal or untouchable. That’s probably a big part of the reason I’ve never touched drugs or nicotine, drink no more than one or two cups of coffee a week, and consider a glass of wine with dinner a wild night on the town. (Well, that and I'm a nerd who grew up in the 80s…)

2. Carpe Diem: I don’t know my life expectancy. Some of the first patients to have surgically corrected heart defects are now in their 80s and the picture of health. Then again, there are people younger than me with my defect who are in heart failure and on disability. All those cheeseburgers I ate on the run in my dot-com days (and am still working off) could catch up with me tomorrow (or never). For that matter, I could get hit by a bus. I save as though I’m going to be one of the first TGA centenarians (which is the plan), but I don’t put off my dreams. If I find myself in a crappy job or relationship, I start working to get out of it. If I want to see the world I save up for a plane ticket and go. If I want the triple cheese decadence special, I eat it with very little guilt (this one’s a double-edged sword, though…) In a nutshell, everyone’s life is too short to put up with nonsense, but I can’t assume I’ll have as many “later”s as other people. And if I make it to that 100th birthday, I’ll have a LOT of cool stories to tell at my party.

3. Overachiever and proud of it: I play hard, and I work hard. I always have to have some sort of goal or project going, and while I’m no prodigy, I’ve accomplished a good bit in my first 30 years. I keep striving for the next accomplishment or the next refinement, which is a good thing in general but is another one of those double-edged swords. (again, see part two for the dark side of this) As a wee kid my cardiologist Dr. Razook told me that if I set my mind to it, I could accomplish anything. I was young/naïve enough to take him at his word, and for the most part he was right.

4. I don’t wait to tell people how I feel about them. Good or bad.

5. I feel an obligation to use my talents to leave the planet better off than I found it.

6. I don’t particularly care what other people think of my choices. I do a job most people would see as the height of boredom. I ignore people who tell me I need to watch some soap opera or “fix” some sartorial flaw of my husband’s. I march to my own drummer—in childhood because I didn’t know how to fit in as a bespectacled hyper-intelligent neurotic wimp, but later on because I didn’t particularly care to fit in. As I’ve gotten older, I’m more willing to wear the right outfit or schmooze with the right people to get to my goals, but the subterfuge is still only skin deep. And I don’t hide my brains for anyone.

To boil this thousand word description of the upside of TGA to its essence, I long ago realized that life was too short to put up with bullshit. I’m driven to make the most of my life, and I also care a lot about using my talents to help others improve their own lives. For the most part these are good things, and I wouldn’t change that for anything. However, that drive, and the drive of other adult CHD survivors that I know of, is powered by a decreasing but eternally present fuel of anxiety, perfectionism, survivor’s guilt, and by memories of the long-dead friends, acquaintances, and playdates that were no less deserving of the healthy, normal, and seemingly improbable life I enjoy today. Not only did I live while other children died, I live *because* other children died, and provided the knowledge needed to save the life of a chubby neurotic drama queen.

For better and worse, all of my life’s experiences have been marked by that essential truth. I don’t know whether that will be true for your child—but all I can do is share my experiences, good and bad, and hope that you can find some use for them in parenting your child. But remember—I still wouldn't change a thing.

Next week: The Bad.


Blog Note - Sarah is one of many people who I have befriended online from this blog. I hope you enjoy her perspective and experience as much as I do! Sarah has kindly agreed to provide a three-part series for LearnAboutCHD, and we can't wait for the next installment.

If you have a story, perspective or news item you would like to share, please email learnaboutchd@blogspot.com. The more we share, the more we learn and the more we can accomplish!