This is 3 year old Carter-Lewis’s story.

On the 31st of August 2017 Carter from Northamptonshire, went for a check up in Bedford hospital. This was after 2 year of his mother fighting with Kettering hospital and doctors because she knew there was something wrong with her child. They finally got an appointment to see a cardiologist and paediatrician to find out that their world would come crashing down. They discovered that Carter was in major heart failure and quickly had a cardiologist from Great Ormond Street Hospital to come and give a second opinion. He was diagnosed with a rare congenital heart disease called Shones Complex disease.

His parents were told that they may not be able to do anything other than send him home and to make him comfortable as his heart was shutting down. The whole left side had deflated the only thing keeping him alive was his lungs as they had not started to shut down but once they started to deteriorate there was nothing that could be done.

The specialist cardiologist went at it all night to find a team that would at least try to give Carter a chance at longer life, he finally succeeded and Carter was blue lighted from Bedford Hospital to Great Ormond Street Hospital in London. After a week of scans, tests and planning they were ready for a nearly 7 hour open heart surgery on a small boy, they put a plastic piece into his aorta to try to widen the pin like sized whole and help with some of the other problems he was experiencing. This surgery was a new project that had not been done before and they did all they could with the time they had.

A week later Carter was back home on the road to recovery with his family. They were told he would need time to grow and put weight on and to get stronger as it was such a high risk putting him under when he was so under weight. The family thought they had a few years but not even 6 months later, he was back in again receiving his second lot of open heart surgery. This time he contracted an infection he struggled fighting but he made it through, to then be told the surgery was a fail. Another surgery would be inevitable and was planned for the beginning of 2019.

Whilst recovering Carter showed signs of bad anxiety and ptsd from the surgery which may get worse after more surgery. Carter is 1 of 5 children and this has taken a massive toll on the family. Both mother and step-dad taking time from there full times jobs, a lot of which has been unpaid.

Carter is not growing and developing as he should as his heart is not working properly. The brave little boy is booked for his third open heart surgery on 8th November 2018. He will have weekly visits leading up to this date at Great Ormand Street Hospital where Carter will undergo surgery to replace his mitral valve and try again to relieve some of the obstruction of his left ventricle.

Every time Carter under goes these surgery’s he is very high risk and there is no guarantees of the outcome after.

I’m a friend of the family and the reason I am writing this is because the family will have to take a lot of time off work, there will be a lot of travelling and (if they can’t stay on site) extra accommodation, which will have a massive financial impact. This amazing family is proud, head strong and resilient but realistically they need help to support them through this. If this can help lessen the load with the already massive stress then any kindness would be gratefully recieved towards the cost of hospital visits and additional costs.

Thanks for taking the time to read x

Thankyou for taking the time to read x