Karley was born in Queanbeyan NSW on 21st April 1998 by caesarean section. At 11weeks old I noticed her face seemed to be asymmetric. I was a little concerned that something didn’t seemed right. Could it be a possible allergic reaction or spider bite? After several appointments and consultations with GP and obstetrician for second opinions as I was told I was just being paranoid. My gut instinct told me things were different. We were sent for a head ultrasound which was the day our lives changed forever. After thinking this was nothing to be concerned about well that was far from the truth. The specialists that scanned Karley’s head revealed she had suffered from an in utero CVA (cerebrovascular accident) STROKE. This was a rare occurrence as babies that have neuro defects within the womb usually don’t progress past 18 weeks gestation.
At 6 months of age she had her first MRI which followed by numerous specialist appointments to confirm a diagnosis of Cerebral Palsy left hemiplegia. We discovered soon after this that Karley struggled to develop and reach typical milestones. Thru early intervention programmes she made slow and steady progress.
At the age of 2 we were introduced to Dr Kevin Lowe from the Spastic Centre who proceeded to treat Karley’s spasticity of her arm and leg. She had numerous casts Botox injections and lengthy physio and OT for continued development.
At the age of 5 Karley required surgery for her left leg lengthening by a procedure known as Z plastering. This was to eventually able her to walk heal to toe. Shortly after surgery whilst in recovery Karley suffered an epileptic seizure which resulted in a code blue, requiring resuscitation and intubation. This was one of the scariest moments in her 5 years young life and unfortunately we were then diagnosed with epilepsy. She required anti convulsant medications and constant supervision. This in turn jolted our lives into chaos. School was difficult as the stigma associated with a child with special needs and more specially epilepsy required detailed planning and programmes in place to heed to Karley’s needs.
After years of hospital emergency trips frequent neurologist follow ups and further planning for the inevitable uncontrolled seizures made childhood growth and development very stressful. Safety was paramount and we developed many systems in place to keep Karley safe. One of these was to have Karley sing while she was taking her nightly bath. There were never any locked doors, crossing the road became challenging as to always needed a hand in hand technique.
As Karley got older her seizures became more frequent and more severe. She had a lot of time off school which in turn took its toll on her ability to learn. School also show cased other children’s inability to accept Karley and her needs. We were faced with torment and bullying just because she was different. This however only made Karley more determined to ignore and rise above people’s cruelty.
High school began and although we enrolled into special education classes the harassment constant teasing and ridicule made her life unbearable. This also played an important role in her learning and resulted in a few violent episodes in which Karley was targeted by other children but again Karley seemed to take it on the chin. She displayed resilience well beyond her years.
In 2009 at the age of 11 Karley again suffered a 9 hour seizure. Horrendous doesn’t even go close to describing it. She was placed in an induced coma to allow her body and brain to recovery.
In 2012 her seizures were becoming more frequent and thus requiring constant hospitalisation. We ended up at Westmead Children’s Hospital in Sydney and were refereed to the Epilepsy Neurologist Dr Deepak Gill. After only meeting and discussing a few of Karley’s symptoms she was given a diagnosis of Sturge Weber Syndrome. All previous neurologists had missed this collection of disabilities thus making our lives yet again feel like there was no end to her specialised needs. I automatically researched and informed myself on this syndrome so that I was prepared for what came next.
Life continued with its ups and downs. Karley tackled daily living to the best of her ability. A few years of triumphs sporting achievements and becoming more confident in her skin was pleasing to see. She was awarded the Australian National Champion for AWD athletes in Track and Field and things couldn’t be rosier.
Early 2014 things again took a nose dive. Karley was beginning to deteriorate with constant migraines, seizures on a daily basis and her routine and ability to function diminished. Through further follow ups with neurologist, cranial facial surgeons and epilepsy specialist it was revealed that Karley had a brain herniation and was in a constant state of uncontrollable seizures. After consultation we were referred to Dr Mark Dexter a Neuro surgeon specialising in epilepsy surgery. He recommended and stated that with a simple operation he could cure Karley’s seizures. He then went on to describe the process and procedure of an anatomical hemispherectomy. A radical operation to remove half of Karley’s brain. A major skull reconstruction was also needed to repair the herniation and skull defect. At 17 years of age and after a long thought process Karley made the decision to undertake this medically life changing surgery.
Although the risks involved were scary and horrific Karley stated that life couldn’t get any worse than it was for her so she took a leap of faith. “Let’s do it.”
September 22nd 2015 she underwent 6 and half hours of delicate brain surgery and skull reconstruction. They removed the right side of Karley’s brain which was in atrophic and stained with the port wine birthmark which is also visible on the right side of her face. With SWS (Sturge Weber Syndrome) vision loss and hemianopia’s was likely. Yes that was confirmed too. We had again prepared for the worst but were confident and hoping for a successful outcome.
I could go into a lot more detail on Karley and her specific special needs but that would take a very long time. Needless to say that she is now living with half a brain and continues to be seizure free. Almost medication free and looking forward to a bright and successful future. She has a cane for her vision deficit which allows her to be independent. At the time I am penning this journey it has only been 5 and half months post-surgery. Yes it was a huge success and Karley has retained her ability to use her left arm and even more surprising is that her fine motor skills are unaffected. It is likely and true to Dr Dexter’s famous line. Karley’s epilepsy is cured. Here’s to a bright happy healthy future.
Lastly and from the words straight from Karley. With determination, strength and courage you can achieve anything you set your mind to.