What if my Baby is Born With a Disability?

One of the top fears of pregnant women is that their baby won’t be born “healthy”.  There are SO many things that have to occur in order to fertilize an egg and start building a human life that it’s only natural to worry about.

In my career as a labour and delivery/postpartum nurse, I’ve seen babies born who weren’t quite what their parents were expecting. With all of the testing available during pregnancy, you may wonder how an unknown birth defect or disability can even happen. But that is one of the mysteries of creating life, it seems.

I’ll never forget the couple who laboured and delivered their beautiful baby girl during one of my shifts: they were in their late 20’s, both athletic, beautiful and one of the most loving couples I’d ever met. When their baby was born, it was obvious to us that she had  Down’s Syndrome. Her parents didn’t catch on for awhile, and none of us where quick to point it out to them: we really wanted them to bond and fall in love with each other so their journey would be a little bit easier.

When the doctor finally told them what we suspected, they were shocked. I mean, Down’s Syndrome is more likely when a mom is older; they had no family history or reason to suspect their daughter would be born with an extra chromosome. But they were so graceful and loving and they didn’t really skip more than a beat. I remember thinking how rare that was, and I'm sure they've had their moments in the years since that baby was born. But perspective is everything when you are handed a child that you didn't expect, isn't it?

One of my favourite resources for parents going through this is one that I found through Lamaze.  

It’s called, “Welcome to Holland” by Emily Pearl Kingsley:

"I am often asked to describe the experience of raising a child with a disability. 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 wonderful plans- the Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. 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 flight attendant comes in and says, “Welcome to Holland.” Holland?  you say. What do you mean Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy. But there has 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 pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks and you must learn a whole new language. And, you will meet a whole new group of people you would have never met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

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 you life, you will say…Yes, that’s where I was supposed to go. That’s what I had planned.

But if you spend the rest of your life mourning the fact you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

Perspective is everything in life. If you’re struggling with a birth or a baby that you didn’t expect, I hope that “Welcome to Holland” can give you some comfort.

If you’re really having a hard time but you’re afraid to open up and talk about it because of mommy-guilt, I urge you to hop over to Mamasoup and share your feelings, anonymously. Chances are, someone else is feeling the exact same way.

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