Our son was born five weeks early at our local hospital he was born they noticed that he was what they called jittery.They thought this was due to a lack of potassium in the body.They treated him for this but found he was still very jittery and also now becoming grey in colour and having breathing difficulties.They decided to transfer him to another hospital who could deal with this,they decided to do a few investigations, a ct scan etched found a shadow in the brain.He was then immediately sent to Alder Hey hospital at Liverpool.He was seen by the neuro surgeon Mr Paul May who diagnosed the vein of galen.The doctors at Alder Hey decided that it would be in ours sons best interest not to do anything until he was at least six months old. At six months we went back for more tests,mri,MRI etc they immediately noticed that the vein had grown in size and had caused severe brain damage, they decided that they wouldn’t be able to treat this now it would not help or benefit him in anyway. We were devastated then and still are.
We were told that it would be better for our son to let nature take its course. He is now due to celebrate his first birthday next week, he is so gorgeous and happy, he’s fantastic. We are now trying to get to see someone at Great Ormond street to see if they could help us. We know now that there is no miracle for us ,but we hope that they will be better at helping us make his life more enjoyable and hopefully give us a better understanding of everything.We sincerely hope that every thing else goes well for everyone. Thank you for listening to us. Like we said before he is just simply the best.
Sean very sadly died 30/04/02. Sean’s parents requested his story to be added to the website