A look of determination spread across my little boy’s face as he gripped his walker.
‘Go Seb!’ I cheered as he proudly wobbled one leg in front of the other.
While every mum cherishes those incredible first steps, there’s a reason why Seb’s were so precious.
You see, my brave boy’s left leg was amputated at just four days old.
Now almost two, Seb’s become one of the youngest children in Victoria to receive a prosthetic limb. It’s just another step in his journey, which started before he was even born…
When I first discovered I was pregnant with twin boys, my partner, Jai, 36, and I were so excited.
But at 16 weeks, I started to notice my bump was growing too quickly.
I was diagnosed with twin-to-twin transfusion. It meant my babies were sharing a placenta, blood flowing from one twin to the other. Also, one was growing much faster than the other was.
After that, I was in and out of hospital for treatment.
But at 20 weeks, my waters broke. Admitted to hospital again, I urged my babies to stay put.
At 23 weeks, a routine ultrasound revealed devastating news. One of my little boys had passed away.
Naming him Zac, Jai and I grieved for the son we’d never meet. It was up to his brother to keep fighting.
‘We just have to hold on,’ I said, gently rubbing my tummy.
At 27 weeks,I began having contractions and was whisked in for a caesarean.
With Jai by my side, our little miracle came into the world. Weighing just 890 grams, we named him Sebastian.
But something wasn’t right.
‘Is he okay?’ I asked.
‘There’s something wrong with his leg,’ a doctor replied.
I squeezed Jai’s hand. ‘Go and look,’ I urged him.
All I heard next was Jai wailing. Everything was a blur as a nurse brought a tightly wrapped Seb over to me. I couldn’t see his body, but my stomach twisted with nerves. What was wrong with him?
Jai went to the Royal Children’s Hospital with Seb while I recovered.
Desperate to see him, I walked out of the ward.
‘I have to be with my son,’ I told the nurses.
When I saw Seb in his humidicrib, my heart broke.
Surrounded by a tangle of machines and wires, he looked so tiny. We still didn’t know what happened, and dressings and plastic covered his leg. No-one could explain how it had been damaged.
But being a premmie, Seb had more battles to fight.
He had two hernias, chronic lung syndrome, and a valve in his heart needed to be operated on.
‘His leg isn’t the issue,’ doctors said. ‘We need to focus on him surviving.’
A few days later, I was with Seb when the nurses changed the dressing on his leg. What I saw left me in shock.
His leg was just a tiny pale bone with a small piece of flesh at the top. There was no skin – I could even see the bones of his toes.
‘We’ll work through this,’ I thought. ‘We have to be grateful he’s alive.’
But our little boy developed a terrible infection, all because of his damaged leg.
‘We have to amputate,’ the doctor said. ‘And we need to do it now.’
I was terrified, but stayed with Seb as they got to work.
Jai and I worried about what the amputation would mean for his future. What if he got picked on at school? What if people stared?
But we both knew that Seb was a fighter.
Once his leg was gone, Seb’s condition improved straight away. The amputation saved his life.
After operations to fix the valve in his heart and repair his two hernias, he went from strength to strength.
Now 88 days old, Seb was strong enough to come home.
Seeing him surrounded by friends and family instead of doctors and nurses, everything we’d been through suddenly hit me.
How would I teach Seb to walk? How would we cope?
I spent every spare minute I had online, researching what to do next.
I came across Limbs 4 Life, a charity that put me in touch with other families in similar situations. Their advice and support was invaluable.
All the while, Seb was powering on. Doctors warned us he may never sit up, but soon our little battler was doing just that!
A cheeky grin was never far from his face as he hit every milestone. He perfected a caterpillar-like shuffle to get himself across the room and could pull himself up onto the furniture.
As a painter, Jai’s ladders were often in the house and when I caught Seb trying to climb one, I knew it was time.
‘We need to get you a leg,’ I decided.
Heading back to hospital, I pleaded for them to consider creating a prosthesis for Seb. They’d never made one so small before.
But as Seb propped himself up on the chair next to me and flashed his knockout smile, our specialist agreed and took his measurements.
Three days later, we were called back into hospital –Seb’s leg was ready!
As we fixed it into place, a huge grin spread across his face. Straight away, he tried to walk and gave himself a big wave in the mirror.
‘There’s no stopping him now!’ I said to Jai.
Within a week, he was able to walk while holding onto his walker or our hands.
‘Leggy’, as his prosthesis became known, is the first thing he reaches for every morning. It’s his best mate.
Now, Seb’s already been measured up for his next Leggy. He’ll need a new one every few months as he grows.
Every day with him enriches our lives so much. He’s even inspired his sister Taylah, 18, to become a nurse.
Thanks to Leggy, Seb’s got the world at his feet. I just know the pair of them are unstoppable.
Prosthetics for Kids
Seb’s not the only one to receive a new limb. Check out these other incredible creations for kids.
• In 2014, five-year-old Hayley Fraser became the youngest child in the UK to receive a 3D-printed prosthetic limb. After being born without fingers on her left hand, she picked a hot pink, glove-like creation which cost less than $100 to make!
• New Zealand tot Mason Page had his left eye removed after doctors discovered he had a rare tumour, but he received an amazing gift last Christmas when specialists created a hand-painted replica eye for the nine-month old.
Originally published in that's life! issue 20 - May 19, 2016