Last August, when Alex was ten months old, he gave us the fright of our lives. I genuinely thought we had lost him. Even now when I think about that day, I feel physically sick.
It was a warm day and the kids were in the garden with Graham. Harrison was running about and Alex was having a crawl on his mat whilst I was doing something in the kitchen.
I heard Alex cry and the next thing Graham comes rushing in with him shouting that something was happening to Alex. What I saw still haunts me. He was in Graham’s arms, completely blue. His eyes had rolled into the back of his head and he was rigid but jerking, like he was having a fit. I grabbed the phone, and somehow managed to dial 999. Whilst I was doing this, he stopped jerking and was completely still, and not breathing. Graham had him on the floor doing CPR (he has had first aid training). I remember screaming at the operator that my baby was dying.
After what seemed the longest few seconds of our lives, he came round and started crying. Although he was still very pale, the blueness went. He was really clingy and sleepy. The paramedic turned up. Because he had started to come round, the ambulance didn’t come for a while so I took Harrison to my parents at the top of the road whilst Graham stayed at home. The paramedic checked him over and put him on a heart monitor which showed up fine. When the ambulance came we went off to Heartlands hospital to get him looked at.
By the time we got to hospital, you wouldn’t have guessed anything had happened. He was crawling around quite happily, charming the doctors and nurses whilst they observed him for a couple of hours.
We were told that he had suffered a reflex anoxic seizure. They didn’t give us much information about it, and told us to see our GP. When we got home we did some research as we’d never heard of it before.
Basically, a reflex anoxic seizure is a fit caused by a temporary cutting off of blood to the brain. It’s nothing to do with epilepsy, and is different to a breath holding attack.
It can be triggered by a number of things – pain, fear and shock being common triggers. In Alex’s case it was pain (Harrison had crashed into him). The trigger causes the heart to slow dramatically or stop, which in turn affects blood supply to the brain. It affects about 8 in every 1000 children and is most common between 6 months and 2 years old. It is scary, but not life threatening, and most children grow out of it.
He has had about five of these seizures since, although none quite as bad as that one. Although they’re still terrifying, we are much calmer when they do happen and we know how to deal with them – place him on the floor in a safe position, check nothing is blocking his airways and rub his back and reassure him. He’s usually clingy and sleepy for a few hours afterwards but they don’t necessitate a hospital visit.
It doesn’t have a massive impact on daily life. Our family is aware what to do if he has one of his seizures. The main things we do is try to prevent them. If he hurts himself we try to make him laugh before he realises it hurts which works most of the time. I know a lot of people would automatically want to wrap him in cotton wool, to stop him hurting himself. As tempting as that is, I think it is important for him to be able to deal with pain.
For more information and support on reflex anoxic seizures, visit S.T.A.R.S.