3 Things to Know Before Your Child Has Open-Heart Surgery

Your child is going to have open-heart surgery. You are going to be just fine.

Trust me, no one wants to be in your position — it’s heartbreaking. But many of us have gone before you, and we know what it’s like to feel helpless and scared, and to do the hard thing anyway. You are stepping out into the darkness, but you are not alone.

I have found the following advice helpful in my own journey as a heart mom. I hope it helps you too.

1. You Can’t Prepare.

It’s tempting to try to get out ahead of any potential issues by preparing yourself for the surgery and hospital stay ahead of time. Don’t do it.

Now, don’t get me wrong, you’re absolutely going to want to have a lot of Hot Pockets stored away in the ol’ freezer. Pack chocolate and trashy magazines, by all means, and lots and lots of underwear. However much underwear you were thinking of packing, triple it. Then triple that. Then triple that again. Then take out stock in Hanes (I am deadly serious). You won’t have a lot of time to, you know, shower. Or comb your hair. You shouldn’t also have to put up with crunchy underwear.

But don’t kid yourself into thinking you can prepare emotionally. There is nothing that can brace you for the unbelievable pain of that first glimpse of your child after surgery. No amount of factual knowledge can prepare you for that emotional trauma. I’m in a position to know; I’ve done it three times so far. The heartache is unbearable and it never gets easier. Never.

You can’t shore yourself up against that pain right now. Don’t even try. Don’t bother to prepare for the actual surgery or hospital experience. But do spend time preparing yourself for the reality that life will still be good when it’s over.

2. You Will Mess Up.

Yeah, sorry. You will mess up. It’s going to happen. You will lose your temper at that one snotty charge nurse and ugly-cry behind the privacy curtain afterward. You will snap at your partner. You will lumber around like an oaf and might accidentally step on your child’s chest drainage tube, potentially causing other problems. And then you will yell hysterically in the direction of your child, “I’m sorry! I’m sorry!” before the Rapid Response team politely asks you to step aside because they kind of need to do an x-ray, like, right now (Not me. I’ve never done that).

The point is, you are a human — in a highly stressful situation — and you aren’t perfect. You are going to lose your mind not once, but many times each day. It’s OK. Cardiac doctors and nurses are used to dealing with parents who are grouchy and sleep-deprived. Give yourself a break!

And while you’re at it, give your partner and your kid a break too! They are just as scared and tired as you are. You can even give that snotty charge nurse a break. She’s the living worst, I know, but she’s just trying to keep your kid alive.

You’re all in this together.

3. The ‘Old You’ Will Die.

I know. This is not what you expected. Again, sorry. But a part of you may die the minute the anesthesiologist wheels your baby away in the hospital bed. The person who walked into that pre-op room is gone forever. You are someone else, now.

You will ache the first time the nurse calls with a surgical update. And again, when the phone rings with the second update.

You will die from heartache when you see your little one in the PICU, breathing only by the grace of God and some skillful intubation. You’ll die again when they wake up and croak for juice or their ba-ba; every time they cry from pain, or ask when they can go home.

But you know what? Dying’s not so bad. The “you” that is reborn is always a little stronger and a little kinder. Heart parents are superhuman. No one can die and be reborn that many times without moving up the evolutionary chain several notches. You and I are made of strong stuff. We may be weepy, hangry, ugly-criers, but we are made of Teflon.

Your child is going to have open-heart surgery. And you are going to be just fine. I’m sure sorry that you have to join our little club — the Parents-Who-Do-Open-Heart-Surgery club — but we’re glad to have you on board.