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Sometimes, new parents of children with restricted growth contact RGA UK for advice and support. Those who do do so at different stages: some parents have received a diagnosis before their child is born; some at or shortly after birth and others years later.


For many parents, adjusting to the news that their baby is different can be a shock.

It is usual to feel this way. It is important to talk about how you are feeling and gain as much information as you can to help you and your child.

Talking with other parents and sharing their experiences of raising a child with restricted growth can be a great first step. After this you may wish to meet and/or speak to an adult with restricted growth to understand more. We have a network of members, parents and professionals including trained counsellors who can help.

If you like, you can contact the RGA UK office for help by email –  office@restrictedgrowth.co.uk.

Reproduced below is a copy of Emily Perl Kingsley’s essay ‘Welcome to Holland’, which some parents may find helpful.

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in 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 flight attendant 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 pestilence, 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 you begin to notice that Holland has windmills….and 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 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, ever go away… because the loss of that dream is a very 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, the very lovely things … about Holland.

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

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