My son Riley was born 14th July 2011. I had no idea throughout pregnancy that there were any problems or anything to indicate there would be complications. After my mum fed him his first bottle he had his first seizure and started to go blue. He was taken to NICU at just a few hours old and was later transferred to Manchester Children’s Hospital at two days old where I was told he had long-segment tracheal stenosis and that he would have to be transferred to Great Ormond Street Hospital, London, for his life surgery. I was so scared, I’d never been out of Manchester without my mum and I had to go all that way alone.
At one week old Riley and I were transferred to GOSH and he had his surgery. The following day, he recovered well and came of the ventilator. About four days later – and two weeks and one day old – he was transferred back to Manchester. I thought we would be allowed home soon after but at the beginning of August I was given more news; that the right side of his brain hadn’t developed properly. Nothing was explained to me properly and I didn’t have a clue what that meant for the future. Riley also has epilepsy and is partially sighted. He also has slight hearing loss though I’m not too worried as he laughs at silly sounds and he’s just got his proper giggle which you cant help but laugh along to! His thumbs and big toes are out of joint, he’s hypersensitive to touch (though he is getting better) and still doesn’t like getting dressed/undressed. He doesn’t like having his nappy changed or having a bath, and the outer corners of his eye lids are still fused together (we’re unsure if this is what has impacted on his sight or if that is linked to his brain development.
I know Riley is at high risk of Cerebal Palsy and that he will/does have autism and ADHD. Although I wouldn’t change him for the world the future can seem very scary as there will be more broncs, more surgery and lots of testing. But, speaking to, and seeing all the other parents and children, have made everything seem less scary, and despite the comments that are to come in the future I am so proud of Riley he is my lil’ Superman and in such a short time has gone through more than what most people ever will in there life, and that makes my boy a much better person than those with nasty comments could ever wish to be.