"My son and receiving a new heart diagnosis"

Last year my son was given a life changing diagnosis of Arrhythmogenic Cardiomyopathy, unfortunately this is a progressive genetic heart disease, and we were informed that the disease was at the severe end of the scale. A devastating and difficult time for us all but especially for my son. He was only 15 years old at the time, over the next few months we had various appointments to attend, and with each appointment and  as more tests were done, we were given more heart breaking news about his condition. We luckily had a lovely Cardiologist, and an amazing Cardiac Nurse Specialist who has supported us and explained everything.

Throughout this period, she has always responded to our needs, queries, emails, phone calls etc, emotional moments, arranging last minute appointments, and has gone above and beyond to support us through the difficult time of coming to terms and understanding the diagnosis and what it means. She has been a great link and contact for us and to help us now that we are transitioning over to adult services since my son has turned 16, and he has had surgery in adult services to have an ICD implanted. It has been a lot, and continues to be a lot to process and come to terms with.

The difference between paediatrics and adult services is worlds apart, and for a young boy to be living with this new diagnosis and coming to terms with it is huge, along with having to move over to a new team with new people, it feels that when you move to adult services, you are left to wait for appointments to come through etc with very little explanation at times.

We have already met the new Cardiologist who will be the doctor for my son and for his ongoing appointments etc in relation to his cardiomyopathy, but that is only because he ended up collapsing and it was that Cardiologist who cared for him and progressed things on for his surgery to be brought forward, or it would’ve been another stranger for him to get to know with no transition or other support. This is a huge thing for my son. 

Without the support of Hannah throughout all this we would’ve been left many times without support or having questions answered, she was able to push things forward with his Cardiologist, and make sure that we had everything explained to us.

When my son unfortunately collapsed and had to stay in hospital I was able to message Hannah in the morning and she spoke with his then paediatric cardiologist who then was able to make contact with the Cardiologist in Victoria Hospital where my son was at the time, and then everyone knew what was happening and had been happening, without the link of the specialist nurse this information sharing wouldn’t have happened so quickly. 

It is a shame this type of support from a specialist nurse isn’t available in adult services or in Fife where we live and we only had this whilst he was involved with Paediatrics in Edinburgh. Hannah has still thankfully supported us through emails and explained things to us as we have moved over to adult services in Fife, and managed to update us on what will happen next, and the Adult Cardiologist explained to her and she was then able to reassure me and in turn I was able to reassure my son.