Andrew Scott, New Zealand

Lynley Scott, mother of Andrew (who has haemophilia A), New Zealand

Andrew, our first baby, was born by caesarean section early because I had high blood pressure. Now we realise how lucky we are that he wasn’t delivered with forceps, which could have had terrible consequences. As it was, he was very pale and had a bruise running down the left side of his face, so when he was two days old the doctor did a blood count and coagulation test. I can still remember to this day when they came in and told me our wonderful new baby had haemophilia. All dreams of having a perfect child disappeared before our eyes. I’m a nurse so knew something about haemophilia, but it was still too much to take in at first. At this time we didn’t need to know the medical information – we just wanted to know what this meant for his future, for example if he would ever be able to ride a bike.

The first two weeks of Andrew’s life were spent in hospital. I think people expected me to cope better than Richard, Andrew’s father, as I was medically trained, but when I’m with Andrew I’m his mum, not a nurse! When we took Andrew home Richard coped extremely well – he learnt very quickly how to give him an infusion. Then, when he was four months old we found out he had developed inhibitors to his treatment. This was a huge blow as it meant the medicine didn’t work anymore. The doctor had mentioned complications but we hadn’t thought about them. When we got this news we began to wonder what else could go wrong.

But Andrew was able to start on a new treatment, NovoSevenÒ , for people with haemophilia who have inhibitors. With this treatment, once the hospital has controlled the bleed, we can go home and treat him ourselves. Being at home is much better than being in the hospital, even if it means getting up at night to treat him.

Most people don’t really know what haemophilia is and we often have to explain it to them, particularly if we want to stop them jumping to conclusions about the many bruises covering Andrew’s body. I had to explain the bruises to the parents at his swimming class because they thought we were abusing him! But it isn’t just ordinary people who think this. Once when we had to call an ambulance because Andrew had such a high temperature and the paramedics stopped and asked us about the bruises when we needed to get to the hospital to get Andrew his treatment!

Even when people know what haemophilia is, they don’t know how to handle Andrew. Some people treat him as "poor Andrew", which drives me mad. He mustn’t be wrapped up in cotton wool. Once when we were in hospital he was being naughty so I had to tell him off. One of my relatives said I shouldn’t do this because he is ill, but I don’t want him to grow up to be one of these bratty spoilt kids.

We have wonderful friends, but one friend has never picked him up. I’ve heard other mums telling their children not to touch Andrew in case they hurt him. I just wish people would ask questions so that they realise Andrew can be treated the same as other children.

We are very lucky because we have a fantastic child minder, who is not afraid to look after Andrew. This gives me the confidence to go to work and not worry about him. It’s very important for Richard and me to continue living our lives. We sometimes leave Andrew with his grandparents so that we have time on our own. We have to make sure our relationship doesn’t suffer.

I would never wish haemophilia on anyone, but then again I wouldn’t ever want to change Andrew. He’s our baby. I hope he grows up and accepts his haemophilia, and learns how to deal with it. Andrew’s condition hasn’t put us off having other children when the time is right – the only difference now is that we would find out if it was a boy or girl before the birth because of the implications for delivery.