Just as a thought…

If 90% or more of all children undergoing surgery to correct a Congenital Heart Defect survive to adulthood (Generally accepted percentage for the United States); and there are currently more adult CHD Survivors (1,000,000) than there are children (800,000)…. then why do a lot of this blog’s comments and my email imply that parents receive very little advice about raising a Cardiac Kid?


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2 Responses to “Just as a thought…”

  1. Amanda (Liam's Mom) Says:

    I have answers:
    1. Our celeb CHDers defect to adult onset CHD causes – see Kate Jackson and Miley Cyrus, or ignore CHD all together- see the governator who had the same surgeon as my son.

    2. CHD isn’t autism or cancer – but kills more children than cancer – and 100% more kids than autism

    3. Our kids don’t look sick until they’re on the brink – so we don’t get the press despite our numbers

    4. Many CHD parents want to pretend it’s all OK until it’s not and don’t advocate or agitate.

    5. Many dr.s don’t know those numbers and the worse the CHD the more pessimistic old timers and the outdated and misinformed become.

    It’s for those realities and what you said that led me to start HRH almost 6 yrs ago. Now we have over 550 families of righties; and nothing’s gonna stop us now! No more silence for us!

    Heart hugs,

  2. Casey's Mom Says:

    You are a rock star bringing this point to light. We are a HUGE groups of heart parents, and we are “warriors”. I think knowledge is the key, and you are very obviously helping inform the world about heart defects!

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