Isla was born a healthy baby with good weight. She was loved by all, especially her 2 elder brothers (6 and 7 years old at that time) that they have a little baby sister. All was fine until she received her 16 weeks routine vaccines and from that night onwards, our lives turned upside down beyond imagination.
On that night, I fed her after midnight and laid her down to sleep and I was exhausted and fell asleep quickly. My husband who never wakes from baby sounds and normally is more tuned into abnormal sounds & noises from the ground floor, he heard faint noises from the cot, jumped straight out of bed, and found Isla frothing at the mouth with a tonic-clonic seizure. Her breathing had stopped and she had turned slightly blue. She then fell limp with no sign of life. Not knowing what was happening, we called the ambulance and went straight to the Resus unit in A&E.
After several months of stays and visits to local hospital A&E and GOSH (and the wonderful care from all areas of the NHS), and several cocktails of medication, Isla was diagnosed with Dravet Syndrome. Some of the episodes were so severe that the tonic-clonic seizures did not stop after 3 hours and had to be put into induced comas. Imagine doing the gym for 3 hours non-stop but on that tiny body of hers. Her limbs then become unusable from exhaustion when she comes back round.
The cocktail of meds were sometimes helpful, other cocktails were more harmful and resulted in triggering more seizures. Finally a cocktail of meds to treat Dravet was given and it helped reduce the duration of the episodes.
Epilepsy has a spectrum of severity with Dravet on the more severe side and within Dravet, there is a scale of severity. It is unknown at which end of the scale Isla's condition is but she requires 24/7 observation as her episodes can happen anywhere and any time. Many a time has she fallen as a result like her Duracell battery had been taken out but with a short circuit that kept her constantly jerking.
Isla is delayed in her speech, learning, and has unstable gait. Nonetheless she surprises us with new words or joined up words that she sometimes comes out with unexpectedly. A lot of times we sense that she is trying to express herself despite her limited vocabulary which does give us hope that she is growing verbally.
We treasure her every moment, every new learning, and every smile she gives because for definite, Dravet has a higher chance of SUDEP (Sudden Death due to Epilepsy), and we want to be with her all the time.