The 30th of June 2015 was the day our lives changed forever. What should have have been a routine 20 week scan at Edinburgh Royal Infirmary turned into a living nightmare. We were taken into the room, the room with the box of tissues on the table that nobody ever wants to go into and were told our baby boy had a very rare heart defect, something that isn’t seen very often. Ryan was diagnosed with Complete Congenital Heart Block. This means that his heart can’t beat as fast as he needs it to, his average heart rate is only around 40bpm it should have been triple this, the part that controls the rhythm of his heart was destroyed.  In order for Ryan to survive he needed to hang on in until he was big enough for him to be delivered and a pacemaker fitted to help his heart beat. We were told that given Ryans unique are rare situation there was nothing they could do, and babies that are born before full term with the condition and the surgery that Ryan needed don’t usually survive. The chances he could hang onto full term with a heart rate so low was slim due to a condition called Hydrops that would eventually set in, this is where the body fills up with fluid and it means he wouldn’t survive. We went home in a state of shock, there was really nothing we could do? We couldn’t and wouldn’t believe it. I spent all day and night calling hospitals, charities, looking to find someone that had been in our situation. Eventually I found someone who told me about experimental drugs that could halt the hydrops setting in but when I asked our hospital they told us no, they wouldn’t do it. I asked for a second opinion somewhere else and we got an appointment at the Queen Elizabeth University Hospital’s fetal medicine Unit and the cardiologists from Glasgow Children’s Hospital met with us alongside fetal medicine consultants and agrees to try it if they felt it would help get him further. They would scan me once/twice a week to see how he was coping. Right enough, the fluid started to build up and I was given this drug to see if it would help reduce it... thankfully it did and it bought us another couple of weeks. Two months before he was due it was decided to deliver him, enough was enough and he had done so well but any longer inside and we would lose him. He was born screaming which was amazing as we were told he probably wouldn’t cry. He was taken away and his heart surgery was scheduled for the next morning. He recovered fast, he amazed everyone at how well his tiny body coped, first of all with being premature but with the added strain on his heart and surgery.  They had never done this surgery on a baby so young, he was the first in Scotland.  Fast forward two years and Ryan’s pacemaker leads snapped, he needed the whole operation done again, this time was harder on him, and recovery was long and painful. the physical and mental pain he went through was heartbreaking to watch, he was terrified but the staff did all they could to make him happy as they could. Due to his experiences routine appointments can be hard on him, but everyone is  always patient and have plenty of things to help distract him and get a smile from him. Ryan will have many more appointments and operations throughput his life at the hospital and it’s lovely to know that there’s things in place to keep him happy and calm.  We owe everyone there especially all staff on ward 1E so much. We are told often, babies like him don’t survive but he did.  I am so thankful to the doctors that gave him a chance when other hospitals said there were none. Ryan will continue to need scans, tests, operations for the rest of his life and as horrible as that is, we are blessed he is here. Ryan is now 5 years old and in primary 1, a time I didn’t think we would ever see. 

Thank you for taking the time to read Ryan’s story so far and please help him to raise as much as we can.