Tom

As I started looking around at HLHS support groups, I noticed that a message kept popping up from a college kid named Tom Glenn. He said that he was an HLHS patient, now a sophomore in college, who was in the process of writing a book about HLHS and was looking for questions from parents that he could answer and also use for his book. So, of course, my first questions for him were about what it was like to grow up with such a potentially dire diagnosis. I worried that even if our son were to sail through all of his surgeries, he would grow up thinking he didn't have a future to look forward to. I also asked him a few other questions about dating, socializing and other things, and he was kind enough to write back immediately, and also to give me permission to repost his answers here:

I do believe that at times I feel bummed out that I cannot participate in certain activities. Until about the age of 10-12, the physical level of kids was pretty low so it was very possible for me to participate in sports at my own comfort level. Once i moved into junior high however i had to forget about participating in most sports and find other things such as boy scouts (i am an eagle scout now) and academics, and student government. If my friends are playing a quick game of basketball and know about my physical limitations however, i can still play a game like that with them...its just the organized sports that i ultimately had to stop which at first bummed me out but now it is fine.

As for the future question, i know that I am going to have a future. I am very healthy and have not had an open heart surgery since my 5th one over 10 years ago. I know that eventually I am going to have to have other procedures done obviously but medicine and technology are so great now that I trust the doctors enough that I do not worry about it on a constant basis. Before a surgery, yes i get frightened greatly, but otherwise, I know that right now i am healthy and as long as i am healthy, i am living tthat part of my life to the fullest.

I have never experienced any feelings in my life that have kept me from dating or getting in a relationship with a girl. the only thing i struggled with was being comfortable with my scar but i soon learned that girls love the big scar on my chest which made it all better. Honestly, it is the girls that worry more. After a long relationship which i have had before, the girl does wonder what your future holds like most girls would and it just takes some reassurance and she would understand if she truly liked you.

My medications currently include: Coumadin- a blood thinner because i used to get blood clots when i was a baby and have been taking them since i was a few days old. Digoxin- because my heart began having an arrythmia, i began taking this to make sure it did not get worse. Enalapril- another medication that attempts at limiting arrythmia's i believe.

The only difference i see between the relationship i have with my mother and a normal child without HLHS is that my mother is more protective of me and tries to limit what i do. she didnt want me to drive at the same age most of my friends did because she was just worried and knew i required some special attention but as i have grown up and gone to college i believe she understands and although she worries just as much, she tries to keep it to herself.

Anyway, reading this made me feel a lot better, although I obviously still have a lot of anxieties, and there is no guarantee that our son will fare as well as Tom. But again, if he has the chance to live a life like that? I think we have to try and give him that chance.