SCALE of the problem
Shai-anne Sifford, 21, from Las Vegas, was horrified when her newborn baby’s skin started to crack in her arms...
Fast asleep and dreaming peacefully, I suddenly felt it. A gush between my legs. I was 35 weeks pregnant in November 2016 and it was too early for the baby to come.
But for three weeks, I’d been waiting for this moment after being in a car crash with my fiancé Zach, 19.
I’d escaped with three fractured ribs and bruising and had been on bed rest ever since.
Now though, our baby was finally on its way!
After I’d been in labour for 16 hours, doctors carried out an emergency Caesarean section to bring our first baby into the world.
As the nurse handed me our 6lb 4oz boy, I noticed Carter’s skin was bright red.
So bright, he looked sunburnt.
He was just seconds old, and his skin was already starting to crack.
His eyelids didn’t quite close, the skin was so tight.
I could tell that Zach was worried, too, but neither of us voiced our concerns at the time.
Maybe this was what all newborns looked like?
‘Time for his heelprick test,’ the nurse said later.
She tried and tried, but Carter’s skin was too thick for the test.
Suddenly, the nurse looked worried.
‘We’ll need to take him to neonatal intensive care,’ she said.
As Carter was whisked away for tests, Zach and I were left wondering what on earth was wrong with our baby boy. It wasn’t until three agonising days later that we finally had an answer.
A doctor came by and handed me a leaflet about something called lamellar ichthyosis (LI). ‘We think Carter has this,’ the doctor said. ‘What does it mean?’ I panicked. ‘Is there a cure?’ He explained that Carter had been born with a rare genetic condition which caused his skin to reproduce many times faster than normal. His little body couldn’t shed the dead cells quickly enough, causing scales. It also meant his skin was so thick he couldn’t sweat, and so he would be intolerant of heat. Our baby couldn’t close his eyes because the skin around them was too tight, and he needed to avoid sunlight because of the potential damage. Carter was also at high risk of skin infections, which could be deadly, and of sudden infant death syndrome, because if he got too warm he could suffocate.
As a new mum, this was just so much to take in. I was left reeling, terrified. ‘What can we do?’ I stammered. ‘His skin has no moisture,’ the doctor explained.
‘You’ll need a humidifier and you must keep his temperature regulated. Keep him slathered in Vaseline to stop his skin cracking.’
Later that same day, we took Carter home, and did exactly as the doctor said.
Even so, Carter’s skin cracked and formed scales and we had to begin the painful task of exfoliating them off.
He screamed through every second of it. Heartbreaking. Our boy was constantly agitated as he wriggled and scratched until the skin bled.
His little fingers curled inwards because of the skin tightening, and he slept with his eyes wide open.
We barely left the house for fear
of him suffering further damage to his skin, or infections.
After six months, the enormity of it all hit me.
‘There’s no sign of him getting better,’ I sobbed.
‘He’s perfect,’ Zach reassured me. ‘It’s just his skin. Besides, he doesn’t know any different.’
It was a heartbreaking reality, but Zach was right.
Determined to help my son, I began doing research online.
I tried coconut oil, caster oil, shea butter, oatmeal baths, and baking powder.
Nothing worked.
Then I read that cannabis oils can improve chronic skin conditions.
Although cannabis oil was legal in our hometown in Nevada, it was only available to people over 21.
‘What do you think?’ I asked Zach nervously.
‘I don’t think it’s a good idea,’ he said, sounding worried. ‘What if we get into trouble?’ I was anxious about that, too. Only… ‘But if it helps Carter, it’s worth the risk, isn’t it?’i said.
I doubted that any mother would feel differently. Anything to help my boy… So in August 2017, I bought some cannabis oil and mixed it with coconut oil. Nervously, I rubbed it onto a patch of red, scaly skin on Carter’s tummy. And just five days later… ‘I don’t believe it!’ I gasped. The redness had completely gone away. I started rubbing it over his whole body and used it to create bath bombs, creams and gels. Within a few weeks, the redness had disappeared and the scales were less thick. Better still, Carter wasn’t agitated and scratching. For the first time since his birth, he transformed into a calm, happy smiling baby. It was such a relief to see that he was no longer in pain.
My eyes filled with tears whenever he grinned.
Now Carter is nearly two years old and we’ve carried on using the cannabis oil products.
The doctors are full of praise for him, admiring how well he’s doing and how well he looks. He’s come so far. He’s learnt to walk and loves watching the
films. He’s not talking yet and doctors believe that the build-up of skin cells in his ear canal may have affected his hearing. But we’ll have to wait and see. Carter is still living a relatively normal life and I couldn’t be more grateful for that.