I watched my baby girl’s heart rate soar to 280bpm as docs revealed she was a ‘ticking timebomb’
WHEN little Evelyn came home from nursery one day in September 2020, mum Emma immediately knew that something wasn't right.
The little one was pale and had been sweating from her head, as well as her hands and feet.
She said: "They saw that her heart rate was 280 beats per minute and when I saw it on the machine I thought ‘something is very very wrong here’."
For children aged between one and three years old, a normal heart rate is anything between 70–110 beats per minute.
Following more tests it was found that Evelyn had Brugada syndrome, CPVT (catecholaminergic polymorphic ventricular tachycardia).
This is a rare but serious condition that affects the way electrical signals pass through the heart.
In some people it can cause the heart to beat dangerously fast.
The condition is more common in men than it is in women and children and many people might not know they have it.
Because of her condition, Evelyn had to have a defibrillator fitted inside her abdomen.
Emma explained: "The doctors always explained it as her guardian angel because you know, if it needs to go off then it will, but it actually has done 12 times which is absolutely frightening.
What is Brugada syndrome?
Brugada syndrome is a condition that affects the way electrical signals pass through the heart.
It can cause the heart to beat abnormally fast and these fast heartbeats are known as arrhythmia.
These can sometimes be life threatening and Brugada syndrome is usually caused by a faulty gene that's inherited by a child from a parent.
The NHS says that a simple heart test can be done to see if you have it.
Many people who have the condition might not know they have it but the NHS says you should look out for the below symptoms:
- fits or seizures
- blackouts
- occasional noticeable heartbeats, chest pain, breathlessness or dizziness
Guidance states: "You can get symptoms at any time, but they are sometimes triggered by something such as a high temperature, drinking lots of alcohol, or dehydration."
"Luckily she should lead quite a normal life. We could have lost Evelyn at any point."
After their ordeal, Emma is now calling for further genetic screening to be made available to young children.
She's doing this in the hope that the condition will be spotted early on, and that children can get the treatment they need.
Emma added: ";It’s a ticking time bomb, you’re not going to have these symptoms and ultimately we want to save lives."
Brugada syndrome is a condition that needs to be monitored as it is one issue that is thought to be the cause of Sudden Death Syndrome (SAD).
This group of ion channelopathies are probably responsible for four in 10 cases of SADS and they include:
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- Long QT Syndrome (LQTS)
- Brugada Syndrome CPVT (catecholaminergic polymorphic ventricular tachycardia)
- PCCD (progressive cardiac conduction defect)
- IVF (idiopathic ventricular fibrillation)
- Sodium channel disease.
There are two other more rare cause of SADS, one is structural heart disease, which causes around one or two in 10 cases and the other is conduction disease.
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