Rory -- our special boy

The next morning the consultant arrived unannounced and asked when my husband would be coming, as he wanted to talk to us together. Unable to wait for Robert to arrive, he began a confusing explanation of twin two's (Rory's) condition. I was told that he was very different from his brother and did not look or move in the same way.

I thought he was attempting to tell me that somehow the laboratory in Belgium had mixed up the sperm, and that Rory was not our biological son. Naturally this conversation rapidly came to a dead end.

He then changed tactics and talked about chromosome abnormalities and, somewhere from the depths of my memory, I dug up a question about Down's Syndrome. He explained that he was not sure as the twins were born very early and it was too soon to tell.

I can only say in retrospect, that anyone possessing the barest minimum of medical knowledge would have realised that Rory had Down's. His facial features and overall hypotonia (floppiness) pointed to just one conclusion.

We spent the rest of the day vacillating between disbelief and fear. The following day when the diagnosis was confirmed, it was found he had a heart defect which affects 50 percent of children with Down's.

This confirmation brought no relief - only further pain and terror. I felt I was spiralling down into a black hole of utter despair and horror. This was compounded by the guilt I felt about his twin, as I was unable to experience the joy and pleasure of giving birth to him.

The hospital refused to give us any information about Down's Syndrome as they felt it would upset us further. We did not appreciate this attitude and to this day find it difficult to understand.