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In 2013 our son Dan collapsed for the very first time an ambulance was called and it was assumed as he'd bashed his face up quite badly that he'd fallen and knocked himself out on impact. He was 8 years old at the time.
Fast forward to just over a year later and he collapsed again, it appeared that the exact same thing had happened. Except at this point we weren't happy to accept he'd knocked himself out twice. We made a Doctors appointment and the day before it Dan again collapsed in a very public way! He was attended by three fabulous first aiders and an ambulance called. The paramedics felt he'd had an epileptic fit. We saw our GP who at first thought it possibly was epilepsy and later that same day Dan collapsed again. The GP then arranged for an ECG and secured us a next day referral to see a Paediatric consultant at Queens Hospital Burton who identified Dan's condition immediately and referred him to a Cardiologist at Birmingham Children's Hospital who diagnosed Dan as having Long QT syndrome.
Long QT syndrome is an electrical disturbance of the heart that unknown to us Dan will of had since birth. His heart has been going into a really fast beat that means blood is not being pumped correctly and his brain is starved of oxygen causing him to pass out. It's hoped at this point the heart rhythm corrects itself but it can persist and lifesaving CPR and defibrillation is needed.
As his parents we were referred for CPR and defibrillator training, and his wonderful family and parents of friends have also organised and attended courses.
Anyone who knows Dan will know how frightened he's been and how much of a knock his confidence took but he has started treatment and has been advised of some life style changes and he is now doing great.
Dan's current school Thomas Russell Junior School have a defibrillator and all staff are trained to use it. Should the unthinkable ever happen and Dan's heart goes into a 'crazy' rhythm continuing into cardiac arrest a defibrillator gives him the very best chance of survival.
Our intention is not to scare anyone but a cardiac arrest can happen to anyone at anytime. Dan is proof of this - we had no idea something was wrong with his heart until this year 2015 he is 9 years old. It is not just the elderly who are at risk and seeing how busy the Cardiology unit is at Birmingham Children's Hospital confirms this.
There is a current push for all schools to have defibrillators and the Department of Education are encouraging all schools to get on board. We are attempting to raise enough money for 5 defibrillators to be installed at the senior school John Taylor High School, four to be placed in prominent, easy access areas and one to be booked out by staff for field trips. We have the full support of the school, and here are a few very real survival stats from the time a persons heart goes in to cardiac arrest to receiving a defibrillator shock -
immediate defibrillation - 90%
after 2 minutes - 75%
after 4 minutes - 55%
after 6 minutes - 36%
after 8 minutes - 16%
The charity organisation SADS UK are liaising with ourselves and the school to put the defibrillators in place, and have been fabulous support to us.
The last few months have been a rollercoaster of emotions for the whole family. To understand the condition and realise our adorable little boy has been at such a dangerous risk is impossible to put into words. We're sure any parent will understand just the thought is too scary to contemplate. As yet we are awaiting results to find out if any of our other three children have the same condition as it can be genetic.
So please for the safety of all our children, and adults alike spread the word and dig as deep as you personally can.
With much love xx
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