Living with endocardial fibroelastosis

My name is Catherine and I thought I would tell my story so that maybe it will give others a bit of hope.

I am now 24 yrs old. When I was 7 weeks old back in December 1979, I was rushed into the Leeds General Infirmary having heart failure.

After I’d had some tests done it was decided that I was to be transferred to the main heart hospital in Leeds at the time (and until 1997 when it was closed and the new heart department was opened at the Leeds General Infirmary) – Killingbeck Hospital. At first, the doctors said if it was one type of heart condition I wouldn’t live a week and if it was another I may not live a year. In the end it was confirmed that I had endocardial fibroelastosis.

My parents were told at the time there was only a 1 in 4million chance of a baby ever getting this disorder, and had I been born 10yrs earlier there would have been nothing they could have done for me at all. The only way I could be treated was by drugs and if that didn’t work there was nothing else they could do. My parents were even ready to have me baptised. I was in hospital for about a month and a half.

I had only been discharged a few days when I had to be admitted again. I had developed pneumonia and it put me right back to square one. Obviously this time around I had a higher chance of dying. I had to be put in an oxygen tent. I was in for about a month. On discharge I was about 4 months old and I only weighed about 8lbs. Having said that, I was a small baby at birth weighing just under 5 and half pounds despite being 2 weeks overdue.

After that I was regularly seen in the out-patients, and every time I was seen I was getting better, and the time in between my next appointments got further apart. I was on digoxin regularly until I was about 2 years old and up until then I wasn’t allowed solid food.

After this my appearance totally changed. I looked healthier, my hair looked less straggly, and my teeth were stronger. However, when I was 3 years old I had to have some baby teeth taken out as the antibiotics had rotted them.

After my out-patients appointment at 5 years old they said I was well enough to attend out-patients every 4 years; so I went at 9 years and then at 13 years. I don’t really remember going to hospital now, but I do remember my appointment 2 days after my 13th birthday. As usual I had an ECG, Chest X-Ray, I was weighed (as I had stayed underweight for a long time) and I had an ECHO. After that I saw my consultant. He looked at my results and said, “Even though I know the damage is there, your results have come back and they are all at the lower end of being in the normal range of what your heart should be.”

“The only thing wrong is that your ECHO still shows left ventricular dilation, but this has remained like this for a long time and I don’t expect it to get any better or worse. I think you are able to manage on your own without a regular medical check up and I am going to discharge you.”

Obviously this was news that my parents had longed to hear for a long time. At the time I was pleased but I had never worried myself about it throughout my childhood, everybody else did that so it was more of a relief to everyone else than it was to me.

I was discharged on 28th October 1992 and except for a bit of tachycardia after a PE lesson once I’ve never looked back since. I have been discharged 12 years this October and I can safely say that I have lived a normal life from being a child, which I thank both my doctor and my parents for, as my consultant advised them very early on not treat me like an invalid and due to that I don’t let anyone treat me as one.

My only precaution now is that I have to have antibiotic cover (amoxicillin) before dental treatment and anything involving the upper respiratory tract. As much as I have gone off amoxicillin – as I quite liked it when I was little, now it has a tendency to make me gip! – it’s a small price to pay and I know how lucky I am. I’ve been very fortunate to be able to live when no-one expected me to and to have a normal life especially as a child, as I know there are so many children who spend their lives in and out of hospital having operation after operation. I touch wood have never had an operation in my life – having those teeth out is probably the nearest I’ve ever got to having one as I was put to sleep for it.

I hope my story gives other people hope in similar situations and hope it shows that endocardial fibroelastosis is not always fatal and there is some hope for others who have it.