Heart Experience Journal – Pickles Family | Boston Children’s Hospital

I’m Diane Pickles, and I am the proud mom of Jake. He’s 22 years old, he has hypoplastic left heart syndrome, which means, in layman’s terms, that he has no left side of his heart, and he’s had three open heart surgeries, the first was at three days of age, the second was at six months, and this third surgery was at two years old. I’m Jake Pickles, I’m 22, I was born with a congenital heart defect known as hypoplastic left heart syndrome. I’ve been dealing with that for my whole life. When I was going to kindergarten, first grade, second grade, you know, recess is the highlight of your day, but that was obviously a struggle for me. I was always missing school, I was always sick, in and out of doctors’ offices, and other kids just didn’t have to deal with sickness like I did, they were always in school, nothing wrong, running around at recess, and sometimes I would miss recess to be inside doing a nebulizer so little things like that, you kind of figure out that you’re a little different. One of the things that was really hard, growing up for Jake, was that his brother’s a really big athlete, and played multiple sports, and that was a big part of our lives growing up, and Jake desperately wanted to play sports. He played baseball until they went to the big field, and then he couldn’t do it. He just couldn’t, he couldn’t really run the bases. He just didn’t have the energy to do it. And that was really hard. I was almost as sad about it as he was, and yet, I think we needed to let him feel sad for a little bit, but not sit in that, and not feel sorry for himself, and not have it come from us, that that was a devastating thing. My name is Bill Pickles, I am proud father of Jake Pickles, I think it separated us from other families, it almost defined who we were as a family. My older son was perfectly healthy, and it never occurs to you that, when you go to have your second child, there could be a medical problem, or an issue, or something that could affect your family. My name is Matt, I’m Jake’s older brother. I remember visiting him in the hospital. One of my earliest memories is actually bringing him a teddy bear after one of his surgeries. My mom says to this day she can’t believe that I remember that, because I must have been, I don’t know, three years old maybe, but that’s kind of one of my earliest memories, but I like that I have that memory, because it kind of puts things in perspective, because seeing him as a healthy, 22 year old man now, it’s easy to forget. It kind of makes you take a step back and remember. I like having those memories, as tough as they are. The way we are now, the four of us are very close, and you know, you really don’t realize until someone brings up the question or until you’re around other families, who it’s just not a similar situation, but I’d say it’s brought us together, for sure. There’s no prognosis for Jake, the future is completely unknown. He’s one of the oldest survivors for his disease, had he been born ten years earlier, he would have died for sure, even five years earlier, he probably would have. He might need a transplant someday, it’s likely he’ll need more procedures, but we just don’t know. And I think that, if you dwelled on the fear, and the unknowns, you’d go crazy. Really, to live in that fear, does nobody any good, most of all, Jake, and that’s the thing that I remind myself every day, most of all, Jake. I want Jake to live with hope, and life, and the belief that he’s going to live a long, bright future, and outlive his mom and dad. They don’t really know much, with people my age, which is kind of scary, just the unknown a little bit, but I’m just planning as if there’s nothing wrong, and I’m just going to live this healthy, happy 22 year old life.

1 thought on “Heart Experience Journal – Pickles Family | Boston Children’s Hospital

  1. I too have HLHS, struggles are real. I've always wondered if theres some kind of club or page or something where other people affected by HLHS can communicate, woud be great If you knew something about that

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