Originally after Romeo’s cardiac catheter it was discussed that he had 2 very leaky valves, the plan was to discuss whether or not to replace these valves whilst they performed his pacemaker surgery. Every time the doctors came to do their rounds I was anticipating to find out what the plan was until one day the doctor came round and told me that Romeo has Restrictive Cardiomyopathy and will eventually need a heart transplant. He just dropped this bombshell on me in a passing conversation, Jimmy was eating his breakfast in the kitchen so I had to break the news to him and obviously he was devastated.
Thinking about it more I wasn’t happy about how we were just given this new diagnosis, it was insensitive of them to just drop it in to conversation like that without us both being together and given the opportunity to discuss it in length and ask questions.
Restrictive Cardiomyopathy is the rarest form of cardiomyopathy affecting as little as less than one in a million children. Because of this it is difficult to diagnose and to this day they still haven’t 100% given us the official diagnosis however his cardiologist is adamant this is what Romeo has, all the signs are showing it. His heart muscle does not fully relax and is very stiff which in turn has led to complete heart block, his atriums are enlarged, he has a leaky tricuspid valve, a leaky pulmonary valve and a leaky mitral valve. All of this combined leads to Romeo having a back flow of blood to the veins causing an enlarged liver and increased swelling all over. He is in congestive heart failure which we are currently managing with medicine however the only cure for this will be a heart transplant.
We are yet to be referred to the Transplant Team at Great Ormond Street Hospital however Romeo will have regular appointments at Southampton to keep a close eye on his heart as this is unfortunately a progressive disease. He has been through so much in his life so far but this is only just the start of his journey and this will be the biggest battle he is yet to face.
Since we have left hospital we have celebrated Romeo’s first birthday, this is a massive milestone especially considering that just over a month ago we thought we had lost him. It wasn’t the birthday we had planned, due to the global pandemic no one else could celebrate with us but we had video calls and our own little party and barbecue at home and the day that lockdown gets lifted we will be sure to celebrate with all our loved ones.
It’s crazy to think just how much this little guy has been through in his first year of life, he is the strongest person I know and he has taught me so much. I don’t know what the next year has in store for us and I don’t know how much time we have before he starts showing the signs that he needs a new heart. It hasn’t been the easiest road but I am so appreciative of everything we have been through because he is here with us and that’s all that truly matters! Happy 1st Birthday Romeo, you are an inspiration and we love you more than words could ever explain.♥️