When you’re an expectant parent, the excitement you feel about the upcoming birth of your baby knows no bounds.
You eagerly try to cover all bases by buying a whole bunch of toys and clothes for your unborn child. And, in your excitement, it doesn’t even occur to you that there is a possibility – however small – that your own child could be born with a serious condition. A condition which would have a substantial effect on their lives.
But imagine believing the child you’ve been carrying for a whole nine months is the epitome of health and then suddenly being informed that you couldn’t have been more wrong.
Twenty-three-year-old Raven Ford, a young mother from Superior, Wisconsin, experienced just that. Her baby, Amelia, has a severe condition which has led people to liken her skin to that of a snake.
Due to the extremity of the condition, Raven was instructed by medics to bathe the one-year-old in household bleach every other day in order to prevent any infections. “Because Amelia can’t use soap, I put two tablespoons of bleach in her bath water every other day,” Raven explained.
Amelia certainly isn’t the only child that has to be bathed in bleach due to a skin condition:
The young mother has since opened up about how other mothers react in horror when they hear about the seemingly unthinkable cleaning ritual. The thing is, her skin’s contact with bleach is vital, as outrageous as that might sound.
And that’s because baby Amelia suffers from a rare autoimmune disorder called lamellar ichthyosis. Essentially, this means that her skin tends to thicken and shed every couple of weeks.
Her skin is hugely sensitive so she cannot be washed using regular soap. As a way off warding off bacteria, doctors advised the doting mother to add bleach to her baby’s bath water.
“It’s controversial, and not everybody is comfortable with it, but it’s been recommended by dermatologists and it’s the only way to kill the bacteria under her scales,” Raven explained. “If we don’t do this, she can get infections or pockets of oil, which show up like yellow bumps on her scalp.”
“She looked like a little plastic doll. She had this build-up of really thick skin, which looked very tight and shiny,” she added. “She couldn’t close her mouth or eyes, so doctors weren’t sure at first if she had eyelids, and it covered her hands and feet so much that there were no visible prints.”
The mother-of-three said that she and her 43-year-old partner, office worker, Gary Moe, could tell from the moment she was born at St Mary’s Medical Centre in Duluth, Minnesota, that something wasn’t right.
Ichthyosis is an extremely rare skin disorder and so medics were initially at a loss as to what the newborn was suffering from.
And so Amelia’s parents went to see a specialist at the University of Minnesota who confirmed that she did, in fact, have ichthyosis. However, at the stage, they could not yet determine what form of the condition Amelia had.
“The not knowing was the worst feeling in the world,” said Raven. “We were told not to Google ichthyosis, but I couldn’t help myself. I just wanted to know what was happening. “Some forms are really severe, and carry quite bleak life expectancies, so it was terrifying thinking Amelia might have to go through that. I had so many questions, and just needed to know what type she had.”
The family is currently awaiting genetic testing, however, doctors are now pretty confident that Amelia has lamellar ichthyosis. According to The Ichthyosis Support Group, lamellar ichthyosis affects approximately one in every 200,000 births and does not currently have a cure.
“We have to do so much day to day to care for Amelia,” said Raven.
“She takes fluoride supplements for her teeth, as we were warned the condition can cause some dental abnormalities. We also have to put Aquaphor petroleum jelly around her mouth when she eats otherwise the food will stain her skin. Her hair is quite brittle and can fall out easily, and her nails have begun to build up and harden too.”
“We read on some support groups about people with ichthyosis having such thick, tough nails that they need to cut them with plyers, and the skin on the bottom of their feet being so tough they exfoliate with sandpaper. We haven’t had to do that with Amelia though, thankfully.”
Those of us who are not afflicted with such a life-altering disorder can only imagine how difficult it must be. And what makes it so much harder to swallow is the fact that, to this day, there is still no cure for the condition.
Hopefully, with the continued advancement of modern medicine, a cure or will one day be found.