Supplied and Elise Amanda Photography
- Whitney Millson, 38, from Melbourne, is raising awareness about arthrogryposis after her daughter was born with the genetic condition
- The condition caused her muscles and tendons to be stiff
- Now almost three, she is defying the odds!
Here Whitney tells her story in her own words.
Standing next to the gender reveal balloon, I grinned.
‘Three, two, one,’ I cheered.
Handing my daughter, Norah, then three, a pin, I watched expectantly as she pierced the balloon and pink confetti exploded around us.
‘It’s a girl!’ I smiled.
After welcoming our second child, Albie, a year earlier in November 2020, my partner Dylan, then 33, and I had hoped for one more.
We’d struggled conceiving so were cautiously hopeful when we found out I was pregnant in October 2021.
At our seven-week dating scan, our bub looked perfect.
And now at 12 weeks we’d learned our bub was a girl.
But by 18 weeks, despite feeling lots of movement early in my pregnancies with Norah and Albie, I couldn’t feel a thing.
Worried, I rang my obstetrician.
‘Best to go down to your local hospital for a scan,’ she encouraged.
There I had an ultrasound and heard the whoosh of our baby girl’s heartbeat.
But a panicked phone call from the specialist the next morning left me frightened.
‘I’m so sorry, the sonographer couldn’t find the baby’s spine, pelvis or kidneys,’ the doctor said gently.
I listened in shock as he explained our baby had an underdeveloped brain and a hole in her heart.
‘She likely won’t survive birth,’ he continued.
‘It looks like she can’t bend her arms and legs.’
Worse yet, I’d need to return to hospital in a week to terminate the pregnancy.
While my heart shattered into a million pieces, I broke the news to Dylan over the phone, as he was working out of town.
Returning to hospital the next week, my heart was breaking.
We’d left the kids with my mum, Christine, so Dylan was by my side.
Before the procedure, I had one last ultrasound.
Then a miracle happened. Hearing the doctor gasp, I looked up.
‘I don’t see any of the original concerns in these scans,’ he confirmed.
Instead, it appeared our girl had arthrogryposis – a genetic condition affecting the muscles and tendons, causing them to be stiff and preventing normal movement.
‘It looks like she can’t bend her arms and legs,’ he said.
‘There’s a chance she won’t be able to breathe on her own, and may never be able to move,’ he warned.
‘She will need reconstruction surgery on her feet, ankles, and knees soon after birth.’
‘We’re willing to take that chance,’ I said, and Dylan agreed.
Amniocentesis revealed our bub wasn’t suffering from any other life-threatening conditions.
Still, I returned to hospital for bi-weekly ultrasounds, and MRI scans every three weeks.
Meeting with a paediatrician specialist at 28 weeks, he gave us some much-needed reassurance.
‘She will need reconstruction surgery on her feet, ankles and knees soon after birth,’ he said.
In July 2022, at 34 weeks, our miracle girl, who we named Georgie, was delivered via caesarean. She weighed 1.6 kilos.
Defying doctors’ odds, our girl made her entrance into the world not only breathing, but screaming heartily too!
I got a quick glimpse of our precious bub before she was whisked away to the NICU with Dylan by her side.
Three hours later, Dylan wheeled me over to properly meet our miracle daughter.
‘Georgie was born with broke arms and legs. The doctors have to fix them.’
With her arms facing backwards and held rigidly by her side, it was like she was fused stiff.
Georgie’s legs were bowed and she was club-footed.
She couldn’t move a muscle – her tiny body was completely frozen.
But to me she was perfect.
After seven weeks at the Mercy Hospital, Georgie was transferred to the Royal Children’s Hospital for monitoring.
Due to Covid restrictions, Norah, then four, and Albie, 20 months, couldn’t meet their little sister in hospital, so instead they FaceTimed from home with my mum.
‘Georgie was born with broken arms and legs. The doctors have to fix them,’ I explained to the kids.
Arthrogryposis, also known as, arthrogryposis multiplex congenita, is a term used to describe a genetic condition involving contractures in the hands, arms, legs, and feet joints. A contracture is a condition where the range of motion of a joint is unable to fully extend or bend. While the cause of the condition is unknown, it is typically discovered in utero or at birth.
What is arthrogryposis multiplex congenita?
Affecting one in every 3,000 babies around the globe, there is no cure for Arthrogryposis. However, there are methods of treatment to improve sufferers quality of life. occupational and physical therapy can improve range of motion with independent feeding, hygiene and other upper extremity physical activity. In more severe cases, orthopaedic corrective surgeries can provide improved range of motion and the ability for sufferers to bear weight and walk.
How rare is arthrogryposis multiplex congenita?
At 13 weeks old, in October, Georgie was allowed to come home.
By now our gorgeous girl was grinning up at me and her daddy. And despite her frozen body, her inquisitive blue eyes took in everything around her.
Still, we returned to hospital every few weeks for treatment.
In an attempt to straighten her limbs without surgery, Georgie wore hand splints and underwent serial casting on her legs – a series of casts were applied to each limb to gradually increase range of motion in muscles and ligaments.
It helped, but at six months old, Georgie needed surgery on her feet. Last year, she had operations to improve her ability to straighten and bend her knees and on her elbows to help them bend.
And later this year, Georgie will have surgery to break her arms, then rotate and reattach the ligaments so they face the right way.
Now, 12 surgeries later, Georgie, nearly three, sits up on her own in her electric wheelchair, and can run after her siblings, now six and four, in her walker.
Our amazing Georgie can feed herself and is even learning to ride a horse.
We can’t keep our gorgeous girl still.
Thanks to physical therapy, Georgie is also on her way to standing unassisted.
Our girl is thriving!
Georgie is an ambassador for the Good Friday Appeal. To donate, visit goodfridayappeal.com.au/donate
