Sarah Bishop talks about her son Marty being diagnosed with hypertrophic cardiomyopathy (HCM) in the womb.

Doctors initially suggested a termination but Marty is now six and doing well In 2010 a series of pregnancy scans revealed that our unborn baby had cardiomyopathy. I remember starting to shake uncontrollably as my husband Darren asked the doctors more questions. I had nothing to say to them. What on earth do you say?

We were asked to return in a week’s time for a further scan. At this appointment we were told that our baby’s heart had worsened and I was offered a termination. This was unthinkable. I was 24 weeks pregnant and had had six previous miscarriages including an ectopic pregnancy. We were told that our baby would be unlikely to survive to the end of the pregnancy and almost certainly would not survive birth. We were given the contact details for Cardiomyopathy UK.

We googled and googled, and cried and cried until it felt like we could do neither anymore. I rang Cardiomyopathy UK and spoke to a nurse there at the time called Gill Rogers. Gill became my life line. We had weekly conversations. She was kind and so caring and really understood what cardiomyopathy was. She sent some cardiomyopathy leaflets and books in the post. I began to understand more and more and, with more understanding, came a very welcoming and important degree of comfort.

We decided to find the best doctors with the most expertise in the country (or even in another country) and found Dr Gurleen Sharland, a fetal cardiology consultant at the Evelina London Children’s Hospital (over 200 miles away). Our GP, who was particularly supportive, referred me to Dr Sharland, who saw us without delay.

Dr Sharland was worth every mile. She scanned our baby son (now named Marty) and told us she could see hypertrophic cardiomyopathy and noncompaction (the left ventricle appears to be spongy and noncompacted) but was confident that we could safely get him to birth. We visited her three times until she said she was happy for Marty to be born a week early close to where we lived.

We were booked in and invited to look around the special care baby unit where he was expected to stay. That was quite a difficult visit. Marty was born weighing 8lbs 1oz. He was breathing for himself and we had a very brief cuddle before the special care team took him into their care. We waited for four hours with no idea what was happening to Marty. My gynaecologist came along, went to special care to find out more, returned with a wheelchair some 20 minutes later and told me to hop into it.

We found Marty in a plastic crib with no tubes, and no breathing or feeding apparatus. He was in his own baby grow but had on a hospital hat and tiny gloves. We were told Marty was fine and told to pick him up and cuddle him. I cried but it was more like hysteria. The nurses had to reassure everyone in the ward they were tears of joy not devastation.

We took Marty home and were asked to return in 11 weeks for more tests. He was well during this period and everything felt wonderful. We were unsure why we had been told he was unlikely to survive to this point but didn’t let it concern us. We were so pleased to have this gorgeous little chap. However, at the tests we were told his heart was still showing serious hypertrophic cardiomyopathy and noncompaction. The world came crashing down once again.

Days later we had a telephone call from a nurse specialist at Great Ormond Street Children’s Hospital (GOSH). The nurse, Sarah Regan, who now also works part-time for Cardiomyopathy UK, asked if we would consider taking Marty to GOSH. Ten days later we had our first visit to that wonderful hospital.

At first I told Darren that I couldn’t possibly go in. This was somewhere you saw on the television, a place for very poorly children. This couldn’t possibly be the right place for us. I was overcome with fear. We were greeted with kindness and understanding, and nurses and consultants who were intrigued by Marty and wanted to help.

Following tests they did an awful lot of explaining to us. They said Marty also had a hole in his heart but his heart function was good.

Marty is now six years old, a beautiful, funny, quirky little character who is adored. He has had numerous visits to GOSH but each time doctors have been more pleased with him. The hole in his heart rectified itself and the thickening of his left ventricle has now improved to the edge of normal limits.

Marty still has noncompaction and the valve on the left side of his heart is mildly malformed. But he looks well and enjoys life to the full. He is aware of his story and has been thrilled to be in the media on several occasions. His classmates call him ‘famous Marty’.

As a family we have found comfort and self-help in fundraising and running Marty’s Penny Bank. From this cause we have raised £1,000 for GOSH, £600 for Genetic Disorders UK, and nearly £20,000 for Cardiomyopathy UK. Cardiomyopathy is now a huge part of our lives. It’s ok though. We have been taught more love, hope and faith, and Marty is the greatest inspiration ever.

_{Marty is pictured above with mum Sarah and dad Darren}