As frustrating as social media can be at times, the content shared across it has been known to save lives time and time again – and Belen Sullivan Robbins has just added her voice to the mix.
The concerned mother has shared a video of the ‘really subtle’ symptoms of infantile spasms - a ‘catastrophic’ childhood epilepsy – after her seven-month-old was diagnosed with the condition.
The first signs of the condition in Baby Bella presented themselves in the form of little ‘twitches’, as Belen explained on Facebook.
“Bella's first little spasms didn't seem like much, but a bit of parental instinct goes a long way and, after witnessing 3 or 4 spasms, I dialled 999. I've luckily never had to depend on our NHS like this before, but a good dose of perspective has ensured I'll never take it for granted again!” she wrote.
Infantile spasms usually present themselves between four and nine months into a baby’s first year. A complex condition, it can ultimately lead to neurological impairment and disability if not caught early on and treated.
While waiting in A&E with her daughter, Belen witnessed Bella endure more of the spasms and decided to film them. Following her tot’s diagnosis, she decided to share the footage, in a bid to raise awareness among other parents.
Although Bella is now on medication, doctors still don’t know what caused the illness. And, facing into uncertainly with her little one, Belen is hoping that her video and story can help other families.
“We don't really know what the next few months or years look like, but if Bella is successfully weaned off the steroids in the next few weeks, that could be it; she may continue to hit her milestones, maybe a little delayed due to the treatment, and go to grow up never knowing anything of this horrendous time, or it could be more challenging; either way, we're comforted in the knowledge we acted as fast as we could,” she added.
We’re wishing little Bella all the best on the road to recovery.
