Just too Stubborn!

I met a young lady named Rose at the Adult Congenital Heart Association convention a few months ago. Rose has Hypoplastic Left Heart Syndrome, or HLHS for short. As I mentioned in a previous post, HLHS is a killer. Left untreated, the mortality rate of HLHS is 100%. But the invention of the Norwood Procedure in the mid 1980’s led to the three stage surgical treatment that gave HLHS kids a shot at life.

Rose is 23, and is part of the first generation of HLHS survivors. In almost any field, you study previous results to predict future outcomes. Not so with Rose, the number of HLHS survivors older than her is too few to even make an educated guess. What does the future hold for her? No one can say. Like Hillary climbing Everest, no one’s been here before.

A while back I took a deep breath and asked my Cardiologist The Question: “How long do you think I’ll live?” She shook her head and said “We’re off the page right now… but you are doing well, and I don’t see any reason why you can’t have a full life.”

That is why the ACHA’s initiative to create a Federal Adult CHD Registry is so important. All of us Adult CHDer’s have done something right to keep us around this long… what is it? Let’s compile the numbers, study them, and find out what it is. Maybe it is a certain combination of medications, genetic makeup, exercise, any number of factors. Perhaps it is advancing medical technology — the later you are born, the better the odds of long term survival. Perhaps the main reason is that we’re all just stubborn as hell.

Rose isn’t planning to go anywhere, either. You see, I didn’t just meet her… I met her fiance´, too! 

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5 Responses to “Just too Stubborn!”

  1. hsofia Says:

    That is awesome … I’m due in a month to have a baby with HLHS. It will be some years before she’s an adult, but hopefully by then the Registry will have been around for many years. I’m really grateful to everyone with CHD who has made medical advancements possible.

  2. Steve Says:

    Thanks so much for reading! I wish you the best of luck with your little girl and there will be times when things look tough and you feel in above your head (especially right after she’s born) but just hang in there! Find and get in a good support group, and lean on them when you need to. Seeing your child with dozens of wires and tubes running to her body will be a shock… but you can deal with it. Don’t be afraid to seek some help or someone to talk to if you need to, and just take it one day at a time.

    And remember that there are a lot of people (including me!) pulling for you!


  3. Shaun Thomas Says:

    Wow, HLHS. Back during the diagnostic phase of my records, they tossed that term around a lot, along with polysplenia. I guess going into congestive heart failure at 2-months didn’t really encourage their opinion of my health.

    But here I am, thirty years later. You know we’re stubborn because we simply refuse to die. 😉

  4. Heather Says:

    this is such a wonderful post! my son asher has severe HLHS. he’s already had 8 surgeries, 6 of them cardiac (2 open heart). he didn’t have the Norwood first, though. he had a NEW procedure, the Hybrid, which saved his life (barely, but asher’s a fighter). since then he’s been stented, cathed, had pieces of stent dug out. he has 12 specialists, plus myriad other doctors who follow him (because they love him). he’s prone to infections, including sepsis twice already (he’s 20 months old). right now he’s entirely tube fed, due to nerve injuries during surgeries.

    it’s so wonderful to hear of adults with his condition! asher has taken us on quite a ride over the last 20 months, but to be honest, i hope it continues for a lot longer (the alternative would suck,). and he’s a toughie… even his former cardio told me not to worry about asher, he’ll be fine, he’s a fighter.

    i’m putting your blog on asher’s, so others can read about adult CHDers. thank-you so much for sharing your story… it gives me hope! 🙂


  5. In it to Win it « Adventures of a Funky Heart! Says:

    […] can allow the heart to function wasn’t even developed until the 1980’s. Before that, HLHS was almost 100% fatal. And Katie is proof that we are still a long way from completely beating […]

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