Raring to go! Losing his legs opened up the world for our Louie
Lying in the dim room without my husband’s hand to hold, I felt so alone. It was June 2020, and I was 20 weeks pregnant. Because of COVID-19 restrictions, Justin wasn’t allowed to come with me to hospital for the scan.
First the sonographer had taken ages moving the doppler over my belly, looking intently at the screen.
Then she’d fetched a doctor, and now he was looking grave, too.
‘Let’s get your husband on the phone,’ he said.
With a deep breath, I clicked to video call and Justin’s face quickly flashed up on the screen. ‘Everything OK?’ he asked. ‘You’re having a baby boy,’ the doctor said.
There was no time to celebrate, though.
‘But he isn’t developing as we’d expect.’
Our baby boy’s legs were very small, tucked under his body.
And there was something wrong with his hands.
‘But he’ll be OK?’ I asked, looking from Justin’s face on my phone to the doctor.
They needed to do tests to know more.
‘It might be very serious,’ the doctor warned.
Our baby might not survive pregnancy. Devastating.
That day, still all alone, I had more tests.
The results would take six weeks, so I went home and fell into Justin’s arms at last.
‘We have to stay positive,’ he said.
I nodded.
This was our miracle baby, after all.
After spending years trying to conceive, we’d become foster parents, relishing having children running around our home.
We’d started the process of officially adopting Tay, then 9, and his little brother Jojo, then 2, when I discovered I was pregnant.
Now they’d have a younger sibling, too.
It’d felt like a dream as we thought up names. Then, this cruel blow. Soon after the scan, I started feeling flutters in my tummy.
‘Are they kicks or hiccups?’ I wondered to Justin.
‘Maybe he’s trying to tell you he’s OK in there,’ Justin smiled.
I could only hope. Weeks later, a genetic doctor called.
‘Your baby should survive the pregnancy,’ she told us.
Thankfully, they’d ruled out more serious conditions. But they had found a rare genetic mutation running through my side of the family. We had no clue.
It caused abnormalities. We wouldn’t know exactly how it’d affect our boy until his birth.
Weekly ultrasounds brought good news.
Our baby’s brain was developing normally.
His heart and other organs were good.
We all started to get excited about our new arrival. Tay and
Jojo were always talking about their new playmate. Then, in October 2020, I gave birth to 7lb Louie by planned caesarean. ‘He’s perfect,’ Justin gushed, handing him to me wrapped in a blanket. First, I noticed Louie was missing his middle fingers. And his other fingers were fused together.
To me, they looked so cute. Pulling aside the blanket, I saw his tiny legs for the first time, neatly tucked under his body.
‘They look like wings,’ I gasped, taking in his adorable toes. Doctors confirmed Louie was otherwise healthy, but he was missing bones in his legs. There was no hope of him ever walking. ‘We’ll always do the best for you little man,’ I vowed. We were booked for follow-up appointments and then discharged. None of us could get enough newborn cuddles. And little Louie was a laid-back lad. Rarely cried, loved being around his family.
When he was four months old, we went to see a specialist.
‘We need to make a decision about Louie’s future,’ he told us. We had two options. Louie could have a series of major operations to rebuild