Restricted Growth Association

RGA for Parents

Parents contact the RGA at different stages, some parents have received a diagnosis of Restricted Growth before their child is born, some at or shortly after birth and others several years later.

Regardless of your personal situation, you will probably be feeling a wide range of emotions as you adjust to this news. You may feel, bewildered, scared, angry or sad. You may experience or be experiencing a period of shock and denial that your baby is different, you may even be blaming each other.

It is usual to feel this way and it is important to realise that your feelings are not towards the child you have but rather the loss of the child you expected to have. It is important to talk about how you are feeling and gain as much information as you can to help you manage your emotions. As you learn more you will feel less helpless and realise that although your child has a very visible genetic condition this is your own special child and they need your love.

Give yourself time to come to terms with this, you may wonder whether you can parent a child who is so different, how will you explain to your friends and family, how will other people react?

Talking with other parents and sharing their experiences of raising a child with restricted growth is often the best 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.

Contact the office for help in the first instance on 0300 111 1970, our association manager Angela is of average height and has a daughter with restricted growth, she will know exactly how you are feeling, as she has experienced it herself. The piece 'Welcome to Holland' reproduced below may also help.

Welcome to Holland

by Emily Perl Kingsley, 1987, all rights reserved

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 guidebooks and make your wonderful plans. The Coliseum. The Michelangelo, 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 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 never have met.

It's just a different place ... 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 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, very lovely things ... about Holland.

Life begins at 40