My ten-year old son, Tyler, was a normal healthy boy until June/July 2012. He started to become tired very easily and also had a blue tinge to his lips on and off. We took him to the GP who said it was just a childhood virus and not to worry. In time his appetite dropped and he also vomited after the simplest of tasks… walking short distances, climbing stairs etc. We took him back and forth to the GP to be told it was a urine infection, then it was another ‘virus’, then it was dehydration and on it went! After the sixth visit I insisted he had some tests (his heart had been checked with the doctor listening through a stethoscope, but nothing found), so they arranged an appointment at Bath RUH for an ECG, chest X-ray and blood tests. Once they had done the ECG and chest X-ray I was taken into a room and informed that Tyler had a very poorly heart: we needed to be transferred to Bristol Children’s Hospital straight away by ambulance!
We arrived on PICU at 6.30pm and Tyler had several tests done and was put onto IV inotropes to support his heart function. Myself, and my husband Dave, were then told that Tyler had Dilated Cardiomyopathy and his right ventricle was severely dilated – his condition was critical. It took the doctors several days to stabilise the dilation due to the unknown cause of Tyler’s condition; usually his symptoms were seen on the left ventricle not the right. Thankfully his condition eventually stabilised. After four weeks we were given the news that Tyler would not survive without a heart transplant and he was put on the urgent transplant list while we waited in hospital. We had a false alarm after nine weeks, but unfortunately the donor heart could not be used. However two weeks later we got another call and Tyler received his gift of life on 27th November 2012 at GOSH London. Fifteen days later we took our little hero home! After tests on Tyler’s old heart he was diagnosed with ARVC. Our boy is now full of life & brimming with energy! We will never be able to thank the donor family enough for giving our precious son another chance at life – they are truly amazing people and will always be in our hearts