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Epilepsy Awareness Day: Ayvah’s Story

clare-eves Written by:
Clare Eves
National Special Counsel - Medical Law

MARCH 26TH – for many it’s just another day on the calendar but for 50 million epilepsy sufferers around the world, it’s a day to recognise an ongoing struggle that often stigmatizes sufferers.

It’s a word we’ve all encountered, and most of us are aware of the seizures that sufferers endure. What many don’t know is that some causes of this disease can be prevented.

At Shine Lawyers, I have seen several cases of epilepsy develop as a result of brain injury, stroke, brain tumours, infections of the brain, and birth defects – often as a result of medical negligence.

Sadly, this was the case for baby Ayvah Yarran, born on the 5th of May in 2016.

32 weeks into her pregnancy, Ayvah’s mother Nicole presented to hospital with pre-eclampsia – which is usually characterised by high blood pressure and protein in the urine after the 20th week of pregnancy.

Although the hospital was aware of Nicole’s pre-eclampsia when they delivered her baby, they did not act on it when it mattered most. Their failure to address her pre-eclampsia resulted in a cerebral palsy and epilepsy diagnosis for her little girl, Ayvah.

Ayvah will survive but with severe disabilities and developmental delays. Talking, eating and hearing will be a struggle. The severe Hypoxic Ischaemic brain injury she endured was preventable and that is why, as her lawyer, I am appealing to all of you on National Epilepsy Awareness Day to take control of your pregnancy and your baby’s future where you can.

For many, the illness poses questions we don’t always have the answers for. For others, like Nicole, we know Ayvah’s disease cannot be attributed to a matter of fate or misfortune.

Epilepsy, particularly when connected to the birth of a child, points to several variables that are in your control, from monitoring your pregnancy, being acutely aware of the changes in your body and demanding the attention and service of medical practitioners to ensure you receive adequate care through every stage of your child’s birthing process.

In this country, with all of our privileges and access to health care, this story does not have to be yours.

Nicole kindly allowed us to share her story to prevent further tragedies like hers from occurring. Nicole knew of her pre-eclampsia diagnosis. Her doctors did too. She deserved better treatment at the hospital she attended.

Sadly, hers is not the only catastrophic birthing story at a hospital that we have heard about. Negligence is not news, so awareness stories like Nicole’s are essential in making sure you know your body and the risks of ignoring complications.

Ayvah is a gift to her mother, but her daily seizures are a constant reminder of the struggles Ayvah will have to face for the rest of her life as a sufferer of epilepsy. Baby Ayvah, like the 50 million other estimated epilepsy sufferers world-wide, will have a life where blank stares, muscle spasms, altered awareness and convulsions are her every day.

On Purple Day or Epilepsy Awareness Day, there are only few goals for sufferers; raise awareness, promote research and take small steps toward finding a cure. You can help families like Nicole and Ayvah on Sunday by going purple, raising funds and starting a conversation.

Together, we can work to dispel the myths surrounding epilepsy and let all those affected know that they are not alone.

 

By Clare Eves

Written by Clare Eves on . Last modified: July 19, 2017.

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