My Life with Tetralogy of Fallots

United Kingdom

My name is Sophie; I was born in May 1989 with Tetrology of Fallots. My mum said that she noticed there was something wrong soon after I was born as I was not feeding properly, also when she was taught, with the other new mums, how to bath a baby she noticed that I looked different from them (I was a ‘blue baby’). She told the Doctors, but they said there was nothing wrong. My parents were sent home with me assuming that the Doctors were right and there was nothing wrong.

As when any baby is born the Midwife comes to check on the baby, everyday, for the first week, that they are home. The first day the Midwife came round she noticed that something was not right, and I was sent back to the hospital that I was born in. They finally realised something was wrong, and found out I had a heart condition; they referred me to Great Ormond Street Children’s Hospital, who then diagnosed me with Tetrology of Fallots (I was 6 days old). At 11 days old I had my first operation, a BT shunt, this was to increase the amount of blood to my lungs, and thus enable me to grow big enough to have my repair operation.

I had my repair operation when I was 2 years and 4 months old. I of course remember none of this time as I was too young. I have asked my parents what they felt, and they have said that it was a scary time as so much could go wrong, but they knew that without having the repair operation then I would not have a long life. The operation was a success and I was back at home two weeks later.

I had a normal childhood, being allowed to do whatever I wanted. Though I used to get tired out quicker than other children, so PE was a subject I really hated especially in Secondary school, where during Mock exams, years 7- 10 had to do jogs, or in case of rain the beep test. I used to hate these as I had to walk for most of the jogs as I got tired out, and used to get shouted at by teachers for not running like everybody else.

I went for checkups every year, everything was fine till I was 12, when my cardiologist started to talk with my parents about the possibility of my pulmonary valve needing to be replaced, because it was leaking and this causes added strain to the right side of the heart making it bigger. My cardiologist said that it would be best to do this before problems arose, as then the operation would be much more successful, and the right side of my heart would be more likely to go back to its original size. When I was 14 I had to have lots of tests on my heart, so that the hospital could decide what they were going to do and when. It was decided that I would have my valve replaced when I was 15. Though I was not very happy about this especially as my parents did not tell me the date of my operation, rather the hospital did in a check up two weeks before it. I was at the time a teenager, who believed that I knew what was best for me; I was also very scared and did not want to have open heart surgery, as I also understood the risks that were involved. After the operation I was only in hospital for a week. 5 weeks later I went on a Guide camp, I was able to do most the activities (I was only not allowed to do water activities, because the water may have been dirty, and could have caused my scar to get infected. I also had to stop on the climbing wall, as stretching hurt my chest).

I have not had to have any operations, since then, but I know that my pulmonary valve will need to be replaced again; however, as it should last 15-20 years, I have a little while yet (though next time they should be able to do it vie catheter instead of open heart surgery).

I do not feel that my heart condition holds me back in any way, I have been able to do everything that I wanted to do, and I have just qualified as a Primary School Teacher, and hope to lead a full and happy life.

Wrote by Sophie Henton
August 2011
Added to the website on September 2011

Sophie Henton has kindly given CHD-UK permission to use the photographs.