My Long QT story – by Jodie Pearson, age 36
I was diagnosed with Long QT1 in 2010 when I was 27 years old. My younger sister who was 23 years old had been having “funny turns” at work with palpitations. Following one of these funny turns she went to see our GP, which she never does of her own accord. Anyway following her consultation with the GP he referred her to Cardiology. My sister actually came home and asked my mom what a Cardiologist was to which my mom was very worried.
Through my sister seeing a Cardiologist and having a basic ECG it was found that she had a prolonged heart rate which lead to the diagnosis of Long QT. As this is a genetic condition I was asked to have an ECG from which I was also diagnosed with Long QT. My mom and dad then had to be tested to see which side of the family it had come down, and it was found to be from my mom’s side. To this day she feels guilty for this.
As my sister and I were both still under the age of 35 we were started on Beta Blockers, my sister was then sent for another test to find out what stage of Long QT we had (1-4). This test involved 2 Anaesthetists putting her heart under so much pressure to the point where she was at a dangerous risk of having a heart attack. Following this we were diagnosed with Long QT1 and treatment is lifelong medication. My mom was not started on any medication as after 35 years of age your risk reduces.
3 days after I was diagnosed and started on medication I was flying to Fuerteventura for my honeymoon. I was advised not to go into water alone or do any exercise in the water as sudden shock or adrenaline is what can cause our hearts into arrhythmia.
3 years after being diagnosed my husband and I decided we wanted to start a family. We had a discussion about the fact that there was a 50% chance I could pass the gene onto our child but my husband completely understood and said we would just deal with that if it happened. Unfortunately that did happen and I understood the guilt that my mom feels.
While I was pregnant with our son we were given the option of having the blood tested from the umbilical cord or waiting until he was slightly older and him having an ECG. We both decided we wanted to know as soon as possible so had the blood tested from the umbilical cord following his delivery. It was only 4 weeks later that I got a call from the Queen Elizabeth Hospital to say that he had the gene, I remember holding my son while I was on the phone and being very calm until the call ended and I just broke down. When my son was 6 months old he had his first consultation at the Birmingham Children’s Hospital and was started on lifelong medication.
My son is now 5 years old, he is an amazing little boy who takes his medication 3 times a day with no problems whatsoever. He is now aware that he has, what he calls “a poorly heart” and he understands that there are some things he is unable to do like sprinting, being supervised in the swimming pool etc. His school have been amazing, they give him his medication, understand all about his condition and even alter physical activity so he can still participate, he did his first sports day this year and they put him in the races that did not involve sprinting.
In 2018 I did a fundraiser at work and opened a crowd funding page and raised £1700 to purchase a defibrillator and case for his school, which is up on the wall of the school and is available for the community to use as well. This just gave us as his parents a bit of reassurance while he was at school.
Myself, my mom and sister also participated in the Heart of London Bridges Walk in June this year which was a very emotional experience as we were the only ones there who were not walking in memory of someone but were lucky enough to be diagnosed and continue to live a normal life, we also managed to raise over £300 between the 3 of us.
So that is my story so far, I never really thought much about having a heart condition until I had my son and he is the reason why I get more involved with raising awareness, raising the money for the defibrillator and when he is older I want to take him on the Heart of London Bridges Walk too.