In 2012 Form1 Technician Shannon Loughran, and his wife Sarah, gave birth to their beautiful boy, Oskar. Before the age of one Oskar was diagnosed with Spastic Diplegic. This month, to support Oskar and the Cerebral Palsy Alliance, we’re walking 10,000 steps a day for 28 days. Here, Sarah opens up about the emotional journey with their inspiring young boy.
“Oskar is our blonde-haired, blue-eyed, mischief maker. He’s funny, cheeky and hard working. He’s 7 years old now and he loves all sorts of music, 80’s movies, like Ghostbusters, 80’s computer games, dancing, shopping, drawing, writing and all things Superheroes. He has a passion for learning and attends Year 1 at Henry Fulton Public School and he’s thriving. Oskar doesn’t have any dislike for school, but he does for his vegetables.
We were over the moon when we found out we were expecting. Oskar has a 10-year-old brother, Eammon who he thinks is so cool. There’ll be no more children for us unfortunately as I’m unable due to the surgery I received when Oskar was born.
Oskar was born premature, at 30 weeks via emergency c-section due to Uterine Rupture – a spontaneous tearing of the uterus. He weighed 1.9 kilos at birth and spent around 60 days in NICU. This is the first time we realised something might be wrong.
Oskar needed a blood transfusion, his lungs inflated and his little body wrapped in plastic. Tests were run everyday, including x-rays and ultrasounds. He showed bleeds on the brain and dark spots in scans. A couple of different scenarios were brought to us but it’s hard to get a diagnosis at such a young age.
As a newborn it was scary. Oskar was tiny and so fragile. He had severe reflux and was hooked up to a C-PAP machine for respiratory support as he couldn’t breathe on his own. Once he was released from hospital he was a dream. Despite reflux, he slept through the night, and at six months he was happy, healthy and giggly.
Cerebral Palsy isn’t really a condition you can get inside the womb, unless there’s not enough oxygen supply. Oskar’s Cerebral Palsy is most likely from not getting enough oxygen when my uterus exploded. Instead of him being in a sack of fluid he was in my blood, due to internal bleeding from the rupture.
You often don’t know the severity of a child’s condition until milestones aren’t met. It was at an appointment with our Pediatrician that we explained Oskar was really stiff. It was hard to bend his limbs. Our Pediatrician sent us to the Cerebral Palsy Alliance and Oskar was less than a year old when he was diagnosed with Spastic Diplegic.
All Oskar’s limbs are impacted but two limbs, his legs, are most affected. The Spasticity, meaning tight, stiff muscles, makes it hard for him to move. This is caused by damage to the motor cortex of the brain before, during or after birth. Cerebral Palsy comes under one big umbrella and each child is different in their condition.
We knew, from his premature and traumatic entrance into the world, something could be wrong. We also knew we needed to be strong. If your child has a disability the best thing to do is research and get the best treatment available. It was overwhelming but we started physio straight away. We were told to learn sign language, as his vocal cords could be affected, and we were told he may be wheelchair bound.
Hospitals are always an anxiety starter but we’re regulars there now. Oskar had his first spinal surgery at around 10-12 months of age. He has hip and spine x-rays every couple of months, and visits his pediatrician, physio and neuro specialist. He used to have botox injections every four months -around 8-10 injections in both legs – and we’re now one year post op for his Selective Dorsal Rhizotomy surgery. SDR is a neurosurgical procedure that selectively destroys problematic nerve roots in the spinal cord.
After surgery Oskar had to learn to walk again. He started slowly with physiotherapy every day. That dropped to three times a week and now it’s twice a week. He’s growing stronger and more confident every day. He’s gone from being in a wheelchair, to using a walking frame and learning Canadian/ forearm crutches. He’s taken to wall walking and taken some independent steps on his own. Oskar will need surgery on his hips, probably next year, to align and strengthen them so they don’t dislocate, and foot surgery in the future.
Westmead Children’s Hospital has been fantastic – the staff, nurses and doctors are amazing. The hardest thing is no child wants to be there. It breaks your heart, and theirs, to see them go through things they need but don’t want.
Like everyone who has a child, highlights come in all shapes and forms and we’ve had many. Ours might not seem as grand as those with able-bodied kids but that doesn’t mean it’s no less of an achievement.
We were told early on that Oskar may never talk, walk or play sport, things that come so naturally to other kids, but he has blown them out of the park. Oskar can pretty much do anything he sets his mind to. There are always little hurdles we need to alter for him to achieve his goals but he amazes us every single day.
Most days we do the same activities as everyone else. We go to the movies, markets, holidays, shopping, going to the beach or parties, just altered to fit us.
Having a special needs child can be tough at times but we gain our strength through our children. All children want to be treated equal. The best thing we can do is educate children to be inclusive of all children, even if they look different.”
Sarah’s Tips For Life
Keep your head up.
Ask questions, even if you think there silly.
Treat all children equally.
Cry when you need to.
Talk to people.
Always know there’s a professional who can help you.
Anything is achievable, if you put your mind to it.
Let people stare – it’s their problem not yours.
Be kind to everyone – you never know what they’re going through.
Don’t take life for granted – we’re here for a fun time not a long time.