Hi my name is Laura and I live in Warwick with my husband James and our two sons, Tristan who is six and our swan Ethan who is two and a half.
Ethan was born two days early without any complications. We thought we were having a nice healthy baby it wasn’t the best start as he wouldn’t feed and had to stay in hospital for six days. Special Care was mentioned but luckily we never had to go there. He got severe reflux and used to take two and a half hours to drink a bottle.
People say now ‘aw I’d love my child to be a baby again’, but I honestly wouldn’t.
Poor boy, he had a terrible time and we went to the GP numerous times as he was in so much pain. The GP eventually sent us to the hospital and one of the paediatricians noticed that Ethan wasn’t holding his head up and he was four months old on 6 March 2015. We went for an MRI and it showed that he had an underdeveloped brain (the corpus callosum). We have been in and out of hospital and he still suffers with things but we have learnt to cope at home. He’s still on his reflux medication and diazepam as he suffers with dystonia which although under control at the minute can get really bad. Ethan doesn’t feed – he’s got a PEG. He had a video fluoroscopy which showed aspiration but he’s allowed tiny tastes to enhance his quality of life. We have since been for another MRI and we have been put on the 100,000 Genomes Project.
Ethan can’t walk. His head control is a lot better and he recently started to roll onto his side which is fantastic!
He’s a happy little boy and knows what he likes and doesn’t like – he’s the boss. He is such a joy and has got ginger curly hair.
SWAN UK has helped us so much – I don’t write that often but I always read people’s posts on the online forums.
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