Page last updated at 20:01 GMT, Tuesday, 27 October 2009

Down's syndrome: Your stories

Baby girl with Down's

The number of Down's syndrome pregnancies has risen by more than 70% over the last 20 years, University of London researchers say. The sharp rise reflects the growing number of older women becoming pregnant, when there is a higher risk.

BBC News website readers share their experiences of Down's syndrome.

TRACIE TANGMAR, WORTHING

Harry and Tracie Tangmar
I was 27 when Harry was born. We had a nuchal scan which indicated the chance of having of having a child with this condition was 1:6555!

I am ashamed to say that due to lack of knowledge about the condition, we would not have continued with the pregnancy if the result had been positive.

Things didn't feel quite right from birth; Harry had poor muscle tone and wasn't feeding properly but the hospital thought he was fine. When he started losing weight the doctors became more concerned but still didn't know what the problem was. He went back into hospital and eventually at around 11 weeks he was diagnosed with Down's syndrome.

At the time I was relieved it was just Down's syndrome and nothing life-threatening. Once we had a diagnosis we just got on with the job of looking after him. Other people were more worried more than we were but it just didn't matter anymore - he was just so adorable and cheeky.

We are used to Harry just being Harry
The hardest part was the fear of the unknown. The hospital didn't give any useful information so we phoned the Down's Syndrome Association. Sometimes I was in tears because I just didn't know what to expect or how he would develop. You have these dreams that he will grow up to be a doctor or lawyer, get married and have children. But you quickly learn to adjust your ideas and ideals for what kind of life your child will lead. Now we are used to Harry just being Harry.

He is such a happy little boy. He goes to mainstream school and has lots of friends there. He is in the cubs and has been on cub camp. He has done horse riding, rock climbing and diving. He likes a little celebrity and everyone wants to play with him.

I do now, however, find myself incredibly blessed to have such a wonderful son, who is a complete and utter delight. He has bought so much joy and pleasure to everyone involved with him and is a credit to himself. It's good to see people's perceptions change as they meet him.


SUZANNE NEWTON, CANTERBURY

Gabriel Newton
I have twins, one of whom was born with Down's syndrome. Having Gabriel, who has just turned 7, was the very best thing that ever has happened. He is an absolute joy; a funny, affectionate little boy who can light up a room.

I had no idea that I was going to have a baby with Down's syndrome. I was 38 and knew the risks of being an older mum. I had a test where they measured the fluid at the back of the neck, which suggested there was a one in six hundred chance of giving birth to a baby with Down's. I declined an amniocentesis as the risks are doubled with twins. My husband and I discussed the options and we both decided to go ahead.

I didn't notice anything different about my pregnancy until 37 weeks when we were told that one twin was not developing as well as the other. I knew something was wrong the moment he was born. Nurses usually congratulate you the moment you give birth but instead of this there was a stunned silence and an awkward atmosphere in the delivery room. This was the worst moment.

When the nurses gave him to me I knew straight away he was slightly different. He was treated a bit like a museum exhibit and we had all sorts of ridiculous advice. We just decided that we would do everything possible to give him the best opportunities. I couldn't wait to get him home and away from the hospital.

He's just like any other child. As a baby he was good and rarely cried. Of course he reached his milestones a little later but that didn't really matter. We tried so hard to get him walking but when he did it was so rewarding.

People have no conception of the positive things Gabriel brings into our family
Now he is at a local school and in same class as his twin sister. He has a one-to-one PA most of the day to help him. Being in a mainstream school is good because he learns from his peers. He is doing well and the school is happy with his progress. We would like to keep him together with his twin as much as possible.

I dislike the stereotyped image of children with Down's syndrome. Some people feel sorry for you. They have no conception of the positive things he brings into our family. He has really educated us and we feel just so lucky to have him.




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