The birth of a baby with special needs is often difficult to accept. For the Stirlings, the news that one of their twins had Down's Syndrome overshadowed their joy at finally becoming parents

Infertility

We were married in l988 and, after a year or two without a pregnancy, we went to the fertility clinic at the Lister Hospital in London to find out why.

My husband's sperm count turned out to be too low for a natural pregnancy. We were also told that the IVF techniques available then were very unlikely to work.

This was extremely hard for us both, as we struggled to come to terms with never having children of our own. Then a medical breakthrough in Belgium brought hope, and we underwent a new sort of IVF called Intracytoplasmic Sperm Injection or ICSI - where a single sperm is injected directly into the egg. By August l993 I was pregnant with twins at last.

As I was 35, I discussed the options for pre-natal testing with my consultant. Amniocentesis carries a one in a hundred risk of miscarriage - exaggerated further by a twin pregnancy. We also faced an impossible dilemma if one of the twins had a problem, so we opted out of prenatal testing. I have never regretted this decision.

I developed pre-eclampsia at 35 weeks and was admitted to hospital immediately. Within two days, I was diagnosed with a clotting disorder called HELLP syndrome. Our healthy twin boys had to be delivered immediately by emergency vaginal ventouse extraction.

Although dangerously ill, I was not particularly aware of my condition and was more concerned with the tremendous discomfort in my back. Alexander was born first and looked like a combination of my husband and my father.

Rory arrived 15 minutes later, and I remember thinking that he did not look like any members of our family, but thought no more about it. My husband Robert noticed that there were several discussions about Rory, and thought this strange, but was not particularly concerned as no member of the medical staff addressed him directly.

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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.

What would have helped

Looking back, I would have greatly benefited from another parent of a Down's child coming to visit me in hospital. It would have reassured me to know that it was not the end of my life but simply a different outcome to that which we had imagined.

I remember the sister on duty telling us that Down's children were lovely but a lot of work. This was probably the most accurate of all the predictions we received. Friends and family were supportive but initially as much in the dark as we were.

Looking back on those early days in the hospital, the main emotions that I recall are ones of sorrow for the child we never had, mixed with anger, panic and fear.

Any feelings of joy and elation that we would have felt towards either child were stifled and buried. I regret that those early days were not eased by the reassurance that the fear of the unknown was an understandable but unnecessary one. If I had known then what I know now those negative emotions would have been less intense.

We were offered the option of having Rory fostered, should we find it difficult to care for him in the short term. This was unthinkable, but it did make us realise that even though the future seemed bleak, it would not be faced without him as part of the family.

When we discovered that Rory had a severe heart defect, fear of losing him quickly overpowered any other emotion. During the first six months of his life he was constantly ill and on medication as we waited for the heart surgery he eventually received.

Rory, now aged seven, continues to be hard work at times, but has opened up a world we didn't know existed. We have met people we would never have met if it weren't for him. He's convinced that the world is manufactured entirely for his benefit. We could all learn from his determined, devil-may-care attitude. Nothing can be allowed to get in the way of him achieving his goals.

We love him dearly and cannot imagine life without him.