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What to Expect

Receiving a diagnosis is never easy. Hearing that your child has congenital heart disease may be surprising, frightening, or unexpected. We recognize this as a challenging time. We are here to extend our support to you.

As you navigate your new journey, you will hear many new terms, meet many new people, and experience many new things. You will work closely with your healthcare team to learn more about your child’s diagnosis and their treatment plan.

Be patient with yourself. You don’t need to know everything all at once. If you are overwhelmed by the information you are given, take your time. We are here to support you every step of the way.

Welcome To Holland

By Emily Perl Kingsley
(Source:  Heart & Soul:  Your Guide to Living with Congenital Heart Disease, Heart & Stroke Foundation)

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas of Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean ‘Holland’? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy; less flashy than Italy.

But, after you’ve been there for a while and you catch your breath, you look around and begin to notice that Holland has windmills. Holland even has Rembrants.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And, for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, go away, because the loss of that dream is a very significant loss.

But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special and lovely things about Holland.