About Ben...

As first time parents my husband and I were very excited about the pending birth of our first child.

We had hopes and plans in place for him. We wondered about the colour of his eyes and hair, which one of us he would most look like and whose temperament he would have.

However, following an ultrasound at 37 weeks pregnant our expectations for the future changed. This was when I was told that my unborn child had significant brain damage.

After consulting many doctors and specialists we were told to go home and to prepare for the birth of our child who would be born fully formed but “is likely to have a range of disabilities including cerebral palsy (he probably won’t walk), intellectual problems and epilepsy.”

The news brought initial devastation and shock. There were no immediate answers as to why and how. I can remember thinking, I’m a first time mum, how am I going to cope with a child with a disability, at least with epilepsy you can take a pill to control it! How naïve I was. And so our family’s journey began.

It was a different journey from what my husband, Sunny, and I had expected, but it’s a journey of discovery and love. Our family motto is think positive and no regrets; it’s not always achievable but keeps us focused.

Today Ben is 11 years old, very handsome I might add, and attends Darling Point Special School.

He has been diagnosed with cerebral palsy, severe intellectual impairment, speech and vision impairment and epilepsy (uncontrolled). Although he can walk which was a huge milestone for Ben at 2½, his balance and fine motor skills are deficient. He uses a wheelchair when out and this also helps keep him safe from seizure related falls. Ben continues to receive physiotherapy, speech pathology and occupational therapy as well as visits to a neurologist for his epilepsy (a well worn path).

Ben had his first noticeable seizure at 7 months of age. I say noticeable because we just didn’t have a clue what we were seeing. Our specialists at the time were a three hour round car trip away.

As you can imagine, weekly visits became exhausting and stressful so we decided to move to Brisbane and seek the support we needed. It was at this time that our neurologist advised us to contact Epilepsy Queensland for support and information.

Ben has had a lot of different seizure types, from absences to generalised seizures (resulting in ambulance trips and hospital stays), to complex partials to drop attacks which happen up to 100 times plus per month. He has been on numerous antiepileptic drugs of varying combinations over the years. I can remember talking with a friend over coffee one day and I mentioned that Ben had just started a particular new drug, and she looked up and said “well, that’s the end of the line then isn’t it?"

During 2005 we started researching other choices to help Ben with his epilepsy. Our specialist suggested steroid treatment, the Ketogenic Diet, or Vagal Nerve Stimulator (VNS) therapy. After much discussion we ruled out the Ketogenic Diet because as a family we would not have coped implementing and maintaining this strict high fat and notoriously difficult diet. Ben has an extremely limited diet to start with and an aversion to change, especially regarding food. So we decided to try the steroid treatment.

That was no barrel of laughs.

After six weeks of doctor visits with injections, plus a week in hospital, I was glad it was over. Ben as usual coped extremely well. Then we waited (family motto think positive and no regrets).

Unfortunately the treatment didn’t help Ben. At the end of 2005 we made the decision to have a Vagal Nerve Stimulator (VNS) implanted. If I could have had the surgery for Ben I would have had it in a heartbeat. A VNS is a small device implanted under the skin near the collarbone. A wire (lead) under the skin connects the device to the vagus nerve in the neck.

The doctor programs the device to produce weak electrical signals that travel along the vagus nerve to the brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures.

The VNS doesn’t benefit everyone, but we were determined to help our son with his drop seizures. Despite him wearing protective headgear he was constantly hurting himself. He had black eyes, fat lips, blood noses, chipped teeth, stitches and lots of bumps and bruises. Above all we wanted to give Ben a better quality of life. Our family life was also extremely strained at this point, Ben’s younger sister would hear him fall and start crying because she couldn’t bear to look in case he was bleeding.

As a mother I felt absolute despair that I couldn’t help. Ben had the VNS surgery earlier this year. Again Ben surprised us all and coped extremely well. He now wears the proud nickname of ‘Bionic Ben’. It’s been a waiting game to see if VNS therapy will help Ben and his seizures. Our expectations at this point in time are optimistic as amazingly Ben’s dangerous drop seizures have reduced to about 60 per month.

We don’t know what the future will bring. People often ask me how I cope, and I just say I’m a mum like all mums except with Ben it’s a different kind of mothering. I rely on the support of family, friends, doctors, specialists, school community and of course Epilepsy Queensland. (Ben’s little sister delights in telling her friends about Epilepsy Queensland’s mascot, Little Poss and the Little Poss Newsletter and eagerly passes on his messages about epilepsy at many a show-n-tell at school).

Epilepsy is a constant in Ben’s life and ours, and although he’s been through so much he continues to shine. We as a family draw strength from his resilience, his bright smile, his unconditional love and a uniqueness that is our Ben. Lindy