Llew was born on his due date in an awful hurry. He was small, 4lbs 14oz, at birth and just didn’t cope very well with being born. I went to hospital the night before and was told everything was fine and I was nowhere near. Overnight I counted contractions by one potato two potatoes etc. - by 5.30am there were no potatoes. We called the hospital and went in, within 10 mintues of being at the hospital I was rushed into theatre and put to sleep – I was 8 cms dilated and Llew’s pulse was 28. I left the labour ward at 6.10am – Llew was born at 6.16am. It took them 6 minutes to put me to sleep and get him out. However, the damage had already been done and we make no mistake in saying without the speed of the professionals that morning we would have lost him then.
Llew was diagnosed with HIE (Hypoxic Ischemic Encephalopathy) of the highest grade. The first week we were told to expect the worst and the doctors did not expect him to survive. But survive he did, however, not without some severe disabilities. The Christmas of 2010 was spent in hospital in a haze of very bleak news and Llew came home at 4 weeks old, he couldn’t suck and didn’t make a noise so we were taught to pass an NG tube. He had passed the hearing test so we knew he could hear us. At 5 weeks old Llew cried for the first time and I nearly dropped him! He started to respond to us and look around.
Things have been tough these last few years but Llew’s smile and laughter and grumpiness carries us through some very dark times.
Llew has the severest type of cerebral palsy and it affects all four limbs called spastic quadriplegia CP with global delay (although some don’t like the word spastic it is a medical term for CP). He can’t walk, use his arms or hands. He is fed through a tube in his tummy called a MIC-KEY button and only has milk and water via this. He can taste things but doesn’t eat. He likes flavoured lip balm. At 2.5 years old Llew had his first seizure and now has epilepsy. He also has to have oxygen overnight as his SATS drop.
Llew is now 7 and a half and in that time he has been in hospital over 80 nights. The last 2 years have been particularly hard as he has respiratory arrested and on two separate occasions has had flu which has knocked him for six. On 3 different admissions we have been close to losing him. One memorable time we spent a week in Alderhay Intensive Care, there was a BBC film crew filming on the Wrexham Maelor Children’s Ward at the time and captured the excitement he caused. Every time we take his blanket (which has stars) and bedding so it is not a stark bed.
We also always take a lion teddy bear that he has had since birth as Llew means lion in Welsh. Llew is a fighter and like his name is very strong. No photo can do him justice as his blue eyes are pools that see everything and his laugh is infecious. He can’t walk or talk but his presence is felt wherever he goes. We brought home a dolly as one not very diplomatic doctor told us, but we definately have a boy who knows and loves the people around him who, like every child, has their moments but steals everyone’s hearts that he meets.