Updated: Oct 21
Into the unknown...
“Don’t thank me yet, the rollercoaster is just starting”.
This is definitely not what we hoped to hear when taking home our baby boy from hospital (for the second time in a month). These words were spoken by our incredible doctor, describing the extent of Luka’s brain injury, and the uncertainty around how Luka’s brain may or may not heal with time and intervention. He strongly advised us to dedicate our time in the first years of Luka’s life to "rewire" his brain.
Luka’s start to life was not an easy one, as you will see from his story below. However, it is also a story of great hope and achievement, and one that continues to surprise and delight us each and every day.
Although not the positive start we hoped for, we were grateful to have this very practical advice from Luka’s doctor upon leaving hospital, advice which we have taken to heart each and every day in trying to help Luka re-wire his brain. This is referred to as “Neuroplasticity”, which has been so important to us throughout Luka’s therapy.
Luka was born healthy at 36 weeks and was a welcome addition to our family. His older sister, Lilly, fell in love with Luka from the moment she saw him in his special care nursery, and we were so excited to take him home 10 days later.
For three days, we enjoyed quiet family time with lots of cuddles and walks to the park. On our third night, Luka’s cry was different, and the next day his feeding was slow. He developed a rash on his tummy, and after a first visit to hospital where he was still in good spirits, we took him back home. Shortly after, I checked on him during a nap and he was blue and not breathing. He thankfully started breathing again as I picked him up, and we raced him back to the local hospital in my arms, no time to put him in his car seat. Once he was stable enough, a PIPER van took Luka to NICU at the Royal Childrens’ Hospital.
A mild cold virus, which can affect infants under 3 months, had taken hold. The team at RCH did an incredible job of supporting Luka’s little body, covered in wires and tubes, until he could fight the Parechovirus, which caused meningoencephalitis and sepsis. We nearly lost him a few times, but slowly the tubes and wires began to be removed, and eventually we were able to hold him again. Fourteen days later, an MRI showed that the seizures had caused widespread white matter damage to all parts of his brain – but at least we knew we could take him home and let the recovery begin.
I will always be grateful that I was introduced to the concept of early intervention and I took this to heart. Luka was deemed at high risk for Cerebral Palsy and Global Delay and we were lucky to be an active part of a trial aimed at improving outcomes for children at risk through early intervention, taking advantage of neuroplasticity, particularly in the first 2 years of life.
Luka was later diagnosed with CVI.
For the past 2.5 years we have had an incredibly dedicated team of Occupational Therapists, Physiotherapists, Speech Therapist, Orientation and Mobility Specialist, Orthoptist and Music Therapist, as well as our great team of Specialists working together to help Luka with his unique needs.
I won’t lie – some days felt like the definition of insanity – repeating activities over and over and expecting a different outcome. Initially they were very simple activities, such as waving a toy slowly and repeatedly in front of Luka’s face and encouraging him to track it. First while lying down, then sitting, then on his tummy, or perhaps with a smaller toy in a different colour or one that was new or didn’t light up or make noise.
Luka was slow to reach all milestones and the amount of practice, patience and persistence was something that did not come naturally. I was forever being reminded by our therapists to give Luka the opportunity to learn, and also to give him the time he needed to process new information. For someone that likes to move on things quickly, this was a tough lesson for me to learn.
Slowly, Luka’s little brain began to make more connections. First by tracking an object, then reaching, then sitting, standing and walking. He has showed a huge appreciation of music and being able to express himself through instruments, humming, and now, through his first words.
Through repetition, fine-tuning his environment to meet his needs, increasing the challenge slowly, and keeping it as much fun as possible, Luka began to learn, see, and do. And more than that – he enjoyed it! I’ve never seen a kid clap himself as long and hard as Luka claps for himself. He truly is his own biggest fan, and the entire family loves to watch his progress.
Luka's progress has started to snowball and his is now able to run, jump, put a basketball through a hoop, shapes in a shape sorter, climb a ladder to go down the slide, has shown a new interest in drawing, and has grown increasingly confident in exploring the world around him, preferably with his sister by his side!
Luka already has some great functional vision, particularly in an outdoor environment where he is most comfortable. We are aware we still have a long way to go, in some areas more than others, but we (and his team) are amazed at his brain’s capacity to learn and his achievements to date.
Luka is a happy, determined and very clever little boy with a bright future and I have no doubt that he wouldn’t be where he is today without the belief and dedication of his brilliant team who contributed to his success.
I strongly believe that the targeted intervention Luka received and still receives, and the countless hours of therapy from his team and family (including his best friend and teacher – his sister Lilly), have given Luka the opportunity he needed to allow his brain to heal and create new pathways through neuroplasticity.
What is Neuroplasticity - a Word from Natalia Kelly, Orthoptist
Neuroplasticity is a continuous and unconscious process, which enables the brain to “rewire” itself or reorganise neural pathways with the aim of optimising cortical functioning.
When we learn something new, the brain has to accommodate for this information by rearranging itself. To be able to retain this new information, the brain has to create new pathways (neural circuits). Initially these pathways are weak but the more we repeat the skill/action or re-read information, then these pathways become faster and stronger and more established. So, if you think about it in terms of learning a new route when driving. When you drive from your home to a new location, the journey is slow and hesitant at first. It also feels like it will take a long time to get to your destination. The second time you travel the same path, it becomes a little faster and you are more confident in where you are going. As you repeat this route multiple times, you can get to your destination with speed, ease and accuracy without thinking too much. Similarly, the formation of new neural circuits requires repetition for information to effortlessly travel quickly from one point to another.
So when Heidi was helping Luka use his vision, she would repeat activities. The repetition was helping Luka’s brain become more and more familiar with how to integrate vision with different skills. Initially the tasks were simple, such as asking Luka to track a brightly coloured toy or reach for an object while Luka was in a supported position. Once Luka was able to form the neural foundations for vision, he was able to make his visual circuitry more complex. So over time, Luka’s visual ability became much more involved. He was able to integrate visual and motor skills for play such as moving behind a rolling ball, picking it up, and putting it in the hoop. These are examples of the brain developing through neuroplasticity.
Neuroplasticity plays different roles throughout our lifetime. In infancy and early childhood, developmental plasticity occurs. The brain evolves to understand the senses and how we move and interact with our environment. So exposure to different experiences is very important for the brain to make sufficient and appropriate connections for development. Developmental plasticity is also a major factor for why therapists encourage early intervention.
As we age, neuroplasticity allows us to attain new knowledge and skills. Learning and memory are intertwined and essential for the acquisition of information. Memory forms the scaffolding framework for us to obtain novel and different information. For example, when you learn about CVI, your brain reorders and adapts to be able to retain and remember the information, so you can build on what you already know.
However, when there is an incident that impacts our brain or body, neuroplasticity directs its attention to optimising function. When there is insult to the brain, neuroplasticity kicks into gear and we see the brain trying to find its way around the injury. This is commonly seen in CVI when the brain has difficulty simultaneously wiring looking and reaching at the same time.
Therapists often manipulate neural rewiring through intervention in order to improve and optimise neurological function. Whilst neuroplasticity has the potential to have amazingly positive outcomes there is also the possibility for negative consequences. In regards to vision, if there is incorrect information obtained or an incomplete understanding of vision and visual processing, interventions employing neural plasticity can create adverse effects for learning and development. Therefore, we believe that it is very important that parents obtain a functional vision assessment from an eye professional and also choose allied health therapists that have experience with working with children with CVI.
It is heartening to know how neuroplasticity can enhance overall function at any age, however it is important that an individual approach is taken to ensure that all therapy is tailored to each person’s unique needs and skills.
There is a fantastic video on CVI Scotland featuring Australian, Andrew Short, showing how much can be achieved through neuroplasticity at any age and is absolutely inspirational to watch: https://cviscotland.org/mem_portal.php?article=77
There is some great literature on neuroplasticity and the brain, which can be found here:
Norman Doige – http://www.normandoidge.com
Brain Plasticity: What is it? https://faculty.washington.edu/chudler/plast.html
Neuroplasticity and CVI: https://www.cvijourney.com/lotfi-merabet-neuroplasticity/