Marty's story

By mum Sarah.

“He is gorgeous, quirky and happy, and loves to perform on stage.”

In 2010 a series of pregnancy scans revealed that our unborn baby had Cardiomyopathy. We were thrown into a world of fear and the unknown. 

Initially all I could do was to cry, and sit and Google everything until I felt I could do neither any longer. The information I needed had to come from a trustworthy source. I nervously rang the Cardiomyopathy UK helpline and spoke in depth with one of their support nurses. She quickly became my lifeline. It was true that she couldn’t predict what was going to happen or make all the sadness go away (as I was so desperately wishing) but she listened, she cared and she gave me understanding, information and support that was vital in those early days.

Despite a very poor prognosis for Marty’s survival, he was born at 39 weeks weighing 8lbs 1oz. He was taken straight to the special care baby unit and for tests. We expected to see him connected up to machines and struggling, but he didn’t even need a special crib. The hospital were so happy with his condition at birth that we were able to take him home.

Our world came crashing down once again when Marty was 11 weeks old. A scan showed that he had significant hypertrophic cardiomyopathy with non-compaction. He also had a hole in his heart and some valve issues. We had a telephone call from a nurse specialist at Great Ormond Street Children’s Hospital, who asked us to take Marty down to London. 

The world-renowned hospital is a daunting and frightening place for parents to enter. I stood outside and couldn’t go in. I just thought this was something that you saw on the TV - it couldn’t be happening to us. Of course we did go in and we were met with kindness, and the medical expertise we needed which was world-class. We still go for regular visits and check-ups, and Marty now takes them all in his stride quite happily.

Marty is a fabulous six year old now and leading a near normal life under ours and the hospital’s watchful eye. He understands he has cardiomyopathy and has been involved in fundraising and awareness campaigns. We have come a very long way from our initial heart-breaking diagnosis and Marty is now described as having a mild uncategorised cardiomyopathy with non-compaction and some valve issues. The previous significant hypertrophy and a hole in his heart have now subsided as he has grown.

©Cardiomyopathy UK. May 2017.