Susan's story

It was 1989 I was 38 and had a good job and a long-term relationship. I was positive about the future. I became pregnant and I was so happy.

But your life can change at any moment!

At about eight months pregnant I became more and more breathless and had severe oedema so was admitted to hospital. I was induced at 36 weeks, four weeks before my baby was due.

It wasn’t until a week after the birth of my son, still very ill with terrible oedema and pains in my back that a visiting locum diagnosed extreme heart failure and I was sent to Harefield Hospital. My mother was told I had a one in two chance of surviving. Nobody had listened to me and how ill I felt, or at any point considered a heart condition. I had gone through the birth with heart failure.

Against the odds I survived, and have seen my son grow up and I have accepted the limits of my life with heart failure. But my story had another surprise chapter.

In 2016, 26 years later, I had a heart attack. I had an angiogram which I had not had before, and this revealed not only the heart failure and heart attack, but also showed a SCAD, which I was told was rare. I had never heard of it and the consultant gave no explanation except to say it was like a split in the heart.

Unlike 30 years ago we now have the internet and I discovered the Beat SCAD website. The site gave me an understanding of the condition. I also found a social network of people who had experience the same feelings as I had, but instead of feeling alone, frightened and isolated as I did 30 years ago I had shared support.

It also told me that the medical world was becoming more enlightened about the condition, thanks to the research taking place at Glenfield Hospital Leicester, instigated by a SCAD survivor, Rebecca Breslin.

It is highly likely that my SCAD came before the heart failure as around 10% of SCADs happen in pregnancy.

When I recently spoke to the consultant midwife at the hospital where my son was born, she still had not heard of SCAD. I directed her to the Beat SCAD website.

It is so important that consultants and midwives are fully informed of this condition and can spot the early signs so that nobody’s life is threatened. I hope she will pass on all the SCAD information to her team. My story highlights the assumption made that young, healthy, men and women do not have heart attacks. I hope now that we are becoming more enlightened.

The whole birth was traumatic and haunts me to this day, but I am a survivor.

I also found a social network of people who had experience the same feelings as I had, but instead of feeling alone, frightened and isolated as I did 30 years ago I had shared support.