20 month old Lucas is a bright, inquisitive child – just like any other toddler his age – it’s only the brightly-coloured hearing aid in his left ear that sets him apart. We spoke to Lucas’ parents, Tamara and Damien, about their brave little boy’s journey so far.
“We welcomed our third child, Lucas into the world on 23 July 2013. He was a happy, healthy baby.
Everything changed when Lucas was seven months old. We didn’t worry at first when he developed a fever – after all, we were versed in the typical childhood ailments that we’d experienced with his older brother and sister, Blake and Tayah.
We assumed Lucas was teething – he was hot, unsettled, dribbling a bit more than usual and lost interest in feeding. We only began to worry when he fell asleep in the bath. That wasn’t like him at all – usually he loved splashing around in the water. The doctor told us Lucas had an ear infection and prescribed antibiotics.
That night I was overcome with an urge to check on Lucas again, even though I’d only just put him down to sleep. I just couldn’t shake the feeling that something wasn’t right. I found our baby with his eyes wide open, his focus locked to one side and a look of pure panic across his face. His little body was totally rigid and wouldn’t stop convulsing. My immediate thought was ‘he’s had a stroke.’
We called an ambulance and were rushed to hospital. We were told the convulsions were due to Lucas’ high temperature, but he was checked all over – his liver, his kidneys, his skin for signs of a rash. By this stage his eyes were glazed and yellow.
We were told not to worry – it was probably just a virus. At that point we knew something wasn’t right.
Lucas underwent a lumbar puncture – a procedure to test the layer of fluid enveloping the brain and spinal cord. I remember the doctor saying ‘what we want to see is a sample of healthy clear fluid.’
Lucas’ sample was bright yellow. We were told ‘this isn’t good – we’re dealing with meningitis.’
The next step was to define the type of meningitis – and therefore the most appropriate treatment. Our minds raced at a million kilometres an hour. How had we gone from a temperature to an ear infection to a life threatening illness in just a few days?
Lucas was put on a drip and given antibiotics alongside tiny amounts of formula for the next three days. We sat by his bedside, willing him to improve… but his condition only worsened.
A scan revealed Lucas had pneumococcal meningitis. Before the scan was over, the paediatrician told us an ambulance was on its way – Lucas was being transferred to see a neurosurgeon at the Women’s and Children’s Hospital. The next words we heard have never left me ‘there’s no time to lose. We’re days away from a dead child.’
An MRI showed there was still fluid between Lucas’ skull and brain. He started a nine-week course of antibiotics – only days after being told he had ‘a little ear infection. Lucas’ temperature stayed down and we breathed sighs of relief as he made slow but steady progress.
Just as we thought the worst was over, we encountered a setback. A few weeks into the antibiotics, Lucas seemed confused. He stopped responding to sounds such as doors slamming, or his name being called. It was like he couldn’t hear us.
Lucas had several hearing tests. Our world changed in an instant when Lucas was diagnosed with a severe-profound hearing loss in his left ear. Doctors told us the antibiotics could well be the cause, but without them, Lucas wouldn’t be here today. What were we supposed to do?!
Going home from hospital, it wasn’t just Lucas’ hearing that had changed. It was like we had a different son. Our bubbly, happy baby had been replaced with a different baby – constantly crying; no longer babbling away.
Lucas just wasn’t happy. He had gone from being bright and bubbly to moody and uncooperative. He didn’t seem as aware of his surroundings, didn’t want to play with other children and had trouble balancing and speaking.
A few weeks later, Lucas started to vomit and I saw his eyes roll back in his head. He slipped in and out of consciousness. How was this happening again? We panicked. We rushed back to hospital once again and were told that this time it really was just an infection.
The doctors suspected seizures due to scar tissue and gave him medication. Thankfully, Lucas hasn’t had any seizures since but continues to take anti-convulsants plus antibiotics in case of immune deficiency.
Lucas has had to start so much of his development from scratch – it was like all his learning was forgotten. Lucas had to re-learn to roll over, try solid food and say his first word. In June last year, Lucas’ neurosurgeon referred us to Can:Do 4Kids for support with his hearing impairment.
We saw a world of difference just two weeks after Lucas started wearing a hearing aid. He went from saying two words to six and showed a huge increased interest in the world around him. It’s incredible that such a tiny piece of equipment changed our child’s life in an instant.
Whilst it was wonderful to see Lucas make great progress, he seemed so angry. He head butted the wall in frustration and slept more than usual. We continued to wonder what was wrong. So many terms were thrown around – Cerebral Palsy, epilepsy, autism, behavioural issues…
Today, Lucas is a picture of physical health – but he continues to experience a lot of social and behavioural challenges. It’s been a difficult journey and there are still so many questions. We still have no idea how much this will all affect him for the rest of his life. When we notice something odd, we often ask ourselves ‘is that because of everything he’s been through – or is that just Lucas?”
With support from Can:Do 4Kids, we have seen Lucas turn a corner. Early Intervention support and Speech Therapy have been vital tools in helping Lucas. He also started attending regular developmental therapy group sessions where his social skills are really coming on. He has learnt to share so can now enjoy playing with other children. He’s also learnt some sign language which has made it a lot easier for him to communicate what he needs. Our little boy is happier all round – it’s just wonderful.
Lucas’ difficulties aren’t the only challenges our family face – Lucas’ Dad and I both have disabilities and at times I feel we can’t give him as much support as we’d like to. I have Cerebral Palsy and Damien has Diastrophic Dwarfism. However, our disabilities mean we have a greater understanding of how to help Lucas. We understand what it’s like to be different and we know how to advocate for the support he needs.
Telling this story reminds me just how much Lucas has been through in his short life so far. Looking back I remember days when we felt helpless – we thought ‘he’ll never get better.’ It’s an amazing feeling to realise we were wrong.
Today Lucas is thriving – and we are forever grateful to Can:Do 4Kids for their support.