From Death, Life

Greater love hath no man than this, that a man lay down his life for his friends. – The Gospel of John; Chapter 15, Verse 13

I hate that he’s gone, and I hate everything about the CHD that took this perfect child from us. Nothing can replace him, and nothing will help us “get over” this. It is too much. – Comment left last night by Ewan’s mom.

Lord, yes. Nothing can replace him, and nothing should. This was a life cut much too short. It’s been a rough week in the Congenital Heart Defect (CHD) family, as at least six CHDers of all ages have passed. Always the optimist, my hope is that someone, somewhere learned something new from one these cases. And perhaps they can couple that new knowledge with what they already know and find the key that unlocks the mystery.

Older CHDers can help, too. Something has kept us going much longer than anyone predicted…what? When I shuffle off this mortal coil I plan to leave my heart to medical research. Let them poke and prod as much as they want, I won’t mind. And perhaps someone can figure out why some of us are only granted an hour upon the stage and then are heard from no more, while others seem to be here tomorrow, and tomorrow, and tomorrow.

There is a reason why that happens… what is it? We haven’t found it yet. But I live in the hope that if something – anything – is gleaned from such a sad event it will be knowledge. Even if all that is learned is what not to do, that helps bring us one step closer.

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3 Responses to “From Death, Life”

  1. Coleen DeGroff Says:

    holding all of these children and their parents in my prayers.

  2. MAry Ellen Says:

    I am so sad to hear of more losses. Breaks my heart.

    I have said one of your first sentences and your last of this post many times.
    This is soo important –
    “Even if all that is learned is what not to do, that helps bring us one step closer”

    This is why I am still here in the heart community.
    James’s story has this kind of relevance. Please please heart community do not turn away or cover your ears because it is too hard to hear.

    I do not know the speciifcs of what happened in the cases of these recent losses. But I do know of many who have fought a hospital acquired infection on top of the CHD.

    While it is very true – we still havent found the missing link to the CHD puzzle. There are many many answers to safe healthcare delivery that we do know. The patient base of the CHD community needs to demand these best practices be implemenedt in their care.

    Are these children dying because of a tired heart? Or, becuase of an infection? (hospital acquired Infections are 100% preventable & we have had the knowledge and the techniology for over 100 yrs)
    Are teh CHDers lost because of what they were born with? Or becuase of a faulty medical device?
    Why are ventilator induced pneumothoraxes still found in the CHD patient?

    This tyoe of data can be stored and collected…and we can mine for it.

    This does nothing to take away the deep & raw grief blanketing these families and the CHD community. But in the long run – if we start really making safety and implementation of best practices a priority we WILL save more children and they WILL live a longer life!

    Heart hugs to all.
    James’s mom

  3. Carolyn Compton Says:

    I recently ( last week) took the next step of organ donation. In Australia, you have to opt in. I signed the National Organ Donor Registry. There is something in me that thinks ugh no, but when I think about someone who may need my heart or kidney or pancreas, and I have selfishly taken it with me to be cremated, it brings tears to my eyes. Here, you have it. I don’t need it anymore. Steve, you may have saved someone’s life in the future as you have inspired me to this tiny action.

    I cannot imagine how Ewan’s family feels.

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