Reflex Anoxic Seizures (RAS) is the term used for a particular fit which is neither epileptic nor due to cyanotic breath-holding, but which rather results from a brief stoppage of the heart through excessive activity of the vagus nerve. I have used the term Reflex Anoxic Seizures (RAS) to describe the convulsions which accompany this particular type of syncope.

Syncope is the result of the temporary cutting off of the supply of oxygenated blood to the brain. The mechanism of the syncope in susceptible individuals includes reflex cardiac standstill (always reversible) commonly following a surprising bump to the head or elsewhere. Associated marked pallor of the skin has led to these attacks being called Pallid Syncope. In more recent times these attacks have been referred to as Reflex Asystolic Syncope.

Our story –

When our son “Heartli” was only 6months old He started having seizures he would hold his breath go completely blue and his arms and legs would jerk till he would take a final breath then pass out On the Saturday Heartli had 5 of these episodes in an hour. He was completely floppy, blue and not responding to us. We thought he had died. We were following our 999 call and getting ready to resuscitate him then the ambulance came and he was still passing out as soon as he came round, he would go again.

We had 4 ambulances and each paramedic told us he was a normal baby and is just holding his breath. After a trip to hospital, he had various tests done mostly ruling out any heart conditions and epilepsy. We were told again he’s holding his breath and to google blue breath holding spells.

Later that night we were looking at videos of breath holding and could clearly see he wasn’t doing that till a family member came across STARS website reflex anoxic seizures.

The charity STARS and the people you talk to for it are amazing they reassure you and help you get that diagnosis as RAS condition is the most missed diagnosed condition and even now still doesn’t have the best knowledge or help for this condition.

Heartli has on averaged 15-20 seizures a month and we still find it incredibly scary watching him do it and sometimes petrified to leave him in case he bumps himself.

So, Lewis and I want to raise money for STARS charity and bring awareness to reflex anoxic seizures as so many people are actually going through or living with this but sometimes you can feel clueless because your told to live with it but it’s petrifying to witness and without the STARS charity, we would have still had a lot of unanswered questions and this charity is still the only place to get all the information on this condition as it is so rare. 

Thank you for taking your time to read and for your support