Racing the Clock

First for some news: Colby is out of Vanderbilt’s PCICU. There hasn’t been a new blog post on him since Friday; hopefully that just means he’s recovering and his parents have been spending time with him and catching up on their rest. There are some photos on his blog; the young man is quite handsome!

Meanwhile… the situation isn’t nearly as bright for Katie. She’s really having a difficult time; she’s scheduled for heart surgery Wednesday and her parents are facing some critical decisions. Go to her blog, offer your support, and keep this family in your thoughts.

Reading about Katie has caused me to scrap my idea for today’s post to discuss something extremely important: If you are the parent of a Cardiac Kid, you will have to make some extremely difficult decisions concerning your child. This is not something that might happen, it WILL happen – nearly all Congenital Heart Defects have to be dealt with soon after birth. Usually this will involve surgery, and quite often time is a factor.

“The clock starts… NOW!” the host says on all those game shows. You think solving the puzzle in 30 seconds to win a new car causes pressure? It doesn’t even come close. The clock is running and you’re trying to decide what to do to save your child’s life. This is where a couple are literally thrown into the fire… and come out on the other side with a strength they never knew they had.

Modern parents have the advantage of a sonogram. Congenital Heart Defects can be detected before the child is born and a plan can be formed. Obviously, the plan may have to be altered once the baby arrives and the doctors have a chance to examine him, but at least there is a road map to follow. If this happens, we plan to do that. If that happens, we’ll try Plan B. Older Heart Moms can tell you stories of the pre-sonogram days when the defect was discovered only after the child was born. From the happiest day of their lives to a life threatening crisis in a matter of moments, but somehow our parents got us (and themselves) through it.

Do not, if possible, make any life changing decision without discussing it with your partner. There are times when things go badly so fast that the other person is out of touch, and the remaining parent has to make the decision alone. Avoid this if possible – discuss options beforehand, and try to come to a basic agreement. Be completely honest with each other. It is a hard conversation to have, but it could keep a decision from being made that is contrary to a parent’s wishes. Someone always gets blamed, and marriages don’t survive that kind of pressure.

Once the decision is made, it’s done, and there is no second guessing. Never, ever, second guess yourself, because if you do it once, you’ll be doing it for the rest of your life. You can’t win the “But what if…?” game, so don’t even play it. Get all the information you can, as quickly as you can, talk it over with each other, and after that – it’s out of your hands. You’ve done the best that you can.

No matter what your core beliefs are, be sure to keep Katie and her parents in your thoughts.

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One Response to “Racing the Clock”

  1. Shaun Thomas Says:

    I almost want to say this applies to doctors too. Before I went in for my actual surgery in 1984 when I was nearly seven, there was a lot of confusion as to what I had, and how to fix it. I read through the surgical notes a couples years ago, and for a while they thought I had polysplenia, then they thought I might be a good candidate for a shunt of some kind, and so on.

    As it stands, I went into congestive failure at two months and my OXY readings were usually in the low sixties for years when they finally got around to performing two cardiac catheterizations before even dreaming about a plan of attack. The surgical notes and doctor visits imply they only did that because it was starting to stunt my growth. I’m not sure I’ll ever know why they waited, but I do know the the stress it put on my poor mother waiting seven years with a kid basically standing at death’s door, uncertain if they’d ever be able to “fix” me.

    I doubt things are as bad these days when they can practically see any problems in the first trimester, but you make a good point. I think they might have delayed my surgery because you can’t undo a surgery; surgical intervention is a last and sometimes necessary resort. But when the doctor finally says, “We really need to do something…” it’s crunch time, no matter how difficult the decision may be.

    But the odds are good. So we “former” cardiac kids thank doting parents for pushing forward through bleaker times, for having the strength to make actual tough decisions when it really matters. 🙂

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