- Carina Klein, 31, gave birth to her son Banks
- A week later, she developed a sinus headache
- After a string of other medical symptoms, Carina was eventually diagnosed with a rare autoimmune event
Here she shares her story in her own words about her experience with acute disseminated encephalomyelitis (ADEM).
‘I wonder if it’s a boy or a girl,’ my husband, Jared, then 32, said as he stroked my baby bump.
‘As long as they’re healthy, I don’t mind!’ I smiled.
When I met Jared on a dating app in 2020, we clicked right away. Over a year later, we decided to move in together.
‘Imagine when we have babies of our own one day,’ Jared smiled after we got engaged on a weekend away in September 2023.
‘That would be a dream come true,’ I said.
‘Shock and joy washed over me.’
I didn’t have long to wait. Four months after we got married at our local country club, I took a pregnancy test. Shock and joy washed over me as I read the positive result.
We were both thrilled.
At first I battled nausea, and a scary bout of food poisoning at 20 weeks. But after that it was plain sailing.
Then at 36 weeks, there was blood in the toilet when I went to the bathroom.
Going to hospital, I was evaluated and monitored overnight.
It subsided and I was allowed home the next morning, but I started bleeding again at 37 weeks and three days.
‘You won’t be leaving until you’ve had the baby,’ a doctor said, back at the hospital.
I was induced the same day and, after just four hours, our baby was born.
‘It’s a boy!’ Jared wept.
We named him Banks.
Coming from a family with two sisters and four nieces, we’d broken the run of girls. My parents were in complete disbelief. A first grandson for them and first grandchild for my in-laws.
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After two nights, we went home to start life as a family of three. A great sleeper, Banks gained weight like a champ.
A week later, I got a sinus headache. Two days after that, I woke up to some tingling in my right hand and foot.
Sitting up in bed was difficult as my head felt heavy and dizzy. I had to hold the walls to get to the bathroom. Not trusting myself, I only felt comfortable lifting Banks from his bassinet to our bed, which was right next to it.
Calling my specialist, they said I was likely dehydrated and told me to drink more.
Within 24 hours, the tingling started to spread to my left side and my speech started to slur.
I decided it was time for a visit to the hospital.
Jared drove Banks and me to Emergency, where blood tests, a CT scan and MRI all came back clear.
Sent away without answers, I was told to follow-up with a neurologist, but there was a five-month wait.
‘Maybe something got pinched in delivery?’ Mum theorised when she came to stay with us and help me care for Banks.
‘I woke up unable to move my entire right side.’
Things didn’t improve, and when Banks was just 15 days old, I woke up unable to move my entire right side.
I had Jared place Banks on my chest to feed him since I couldn’t lift him.
When Jared could barely understand what I was saying, he knew it was time to go to the hospital.
When he struggled to get me to the car, I heard him and Mum decide to call an ambulance.
Back at hospital, doctors were very concerned, and treated me for a stroke.
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My condition worsened – I had double vision, severe headaches, nausea, and difficulty swallowing.
Two days in, tests showed I had inflammation and lesions in my brain and cervical spine. I was diagnosed with a rare autoimmune event – acute disseminated encephalomyelitis (ADEM), which meant I had inflammation in my nervous system.
‘Your immune system is confused and it’s attacking the myelin layer of your nervous system, which is impacting your brain and spinal cord,’ a doctor said, adding it was more common in children, with little information on how it affects adults.
While they couldn’t be sure what the ultimate cause was, the doctors believed it had developed postpartum. I was treated with steroid therapy, blood transfusions, and antibodies.
‘I wasn’t able to move, talk or hold him.’
Jared and my family brought Banks for his first visit after a few weeks, and held him to my face since I wasn’t able to move, talk or hold him.
I prayed hard to just be able to make it home.
After seven weeks at the hospital, I was only able to lift my left arm to wave and wiggle my toes.
Moved to inpatient therapy I began doing exercises to learn to hold my head up, to build my strength, and relearn how to walk. I’d even use a fake baby to practise caring for Banks.
I never imagined I’d spend my son’s first Christmas in hospital, but after being away for 102 days, I was finally able to come home.
I pushed Banks out in a pram, the staff waving pompoms and cheering me on.
Jared, 32, was by my side and Mum and Dad looked on. They’d been so wonderful.
I left hospital relying on a walker to get around, and still have a tracheostomy to help me breathe, since my vocal cords are paralysed medically.
The PEG feeding tube I relied on for nutrition has since been removed as my swallow strength has increased, and I’m able to consume regular foods.
‘I’m so thankful for my family.’
I’m so thankful for my son, my husband and my parents who were there when I couldn’t talk, move or advocate for myself.
I still have a long road ahead for recovery, but I’m so grateful to the medics and therapists who got me back on my feet, and for every day I get to spend with my precious family.
