What is HLHS?

What is HLHS?

You’re here, you want the facts.  Read my HLHS write-up here:

https://hlhsdad.com/2013/10/12/what-is-hypoplastic-left-heart-syndrome/ 

Surgical Treatment for HLHS Comes in 3 Stages:

  •  Norwood Procedure (roughly 7 days old)
  • Glenn Procedure (roughly 6 months old)
  • Fontan Procedure (roughly 3 years old)

Prior to the early 1980’s, HLHS was 100% fatal until Dr. Norwood from Philadelphia Children’s Hospital began successful surgeries.  Today the survival rate for kids with HLHS is much higher and innovations are coming down the line as more research is conducted.  Kids aren’t just surviving, they’re thriving and more HLHS kids are living longer than ever before!

Still, there remains challenges:

  • What are the causes of HLHS and other CHDs?  We still don’t know, but we’re learning more and more.
  •  Medical teams continue to improve their treatment and care of HLHS kids.
  •  As CHD warriors grow up, we don’t know much about CHDs in adulthood, so a lot is being done to study Adult CHD patients.  Advocacy groups are pushing for funding to support the CDC, which is working to track CHD data across the live span, so we know a little better what to expect in adulthood.

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  1. Emma and Rebecca

    You’re going through such a hard time and we really appreciate that you have took the time out of your day to tell us what’s it’s like to be living with this condition so thank you.

  2. Christine Ouellette

    Thank you for all you do to spread awareness and provide support! My son Ben is 18 years old with HLHS – definately came into this world with a ball in one hand! He always loved sports. If there’s one piece of advice I can give to other families is to keep your kids as involved in sports if they love – but “push/lean” them towards positions you know have longevity once they hit High School. Soccer goalie, Hockey Goalie, golf, doubles tennis. No matter how good they are it’s tough to keep up once all the fabulous athletes hit puberty! Good Luck to you and family!

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