Nurses Can't Wipe White Coating Off Baby's Skin, Realize It's Actually Deadly Disease
“Harlequin ichthyosis” is a phrase that sounds like something straight out of a bad science-fiction novel, an odd made-up term every bit as silly as it is strange. But for those who have to deal with it, harlequin ichthyosis is straight-up serious.
Courtney Westlake of Springfield, Illinois, would learn that truth soon after giving birth to her second child on Dec. 19, 2011.
When little Brenna entered the world, she was covered with a strange white coating.
“At first glance, she seemed to be covered with a thick coating of white, and as the doctor placed her on my chest, I wondered if I should even touch her,” Westlake told Everday Health. “For a split second, it felt like the world had stopped, as the medical staff immediately sprang to life with panic-stricken action.”
They had reason to be concerned. As everyone would later learn, Brenna had harlequin ichthyosis, an ultra-rare genetic disorder.
Nurses couldn’t wipe the coating off of the baby’s skin — because it actually was her skin.
Often a deadly disease, harlequin ichthyosis causes incredibly thick and hard deposits of skin to grow on a child.
This skin actually grows into fissured, plate-like structures that leave little ones vulnerable to spikes in temperature and infection. In fact, that’s exactly what happened with Brenna.
Five days after her birth, she developed a blood infection. It was so severe that the family feared she wouldn’t make it.
“That was the first time I broke down,” her father, Evan Westlake, told The State Journal-Register. “That was an awful feeling.”
“I have no idea how we got through that first year emotionally,” his wife said. “From a mental standpoint, it was difficult.”
While calling it difficult hardly scratches the surface of the family’s suffering, somehow they made it through — little Brenna included.
“If you were to compare her to where other kids [with the disorder] were, she’s doing phenomenally well,” pediatric dermatologist Dr. Joseph Conlon explained.
In addition to dealing with her daughter’s various medical needs, Courtney’s next greatest challenge is dealing with strangers who stare at her daughter’s unconventional appearance.
She has to explain to them that Brenna’s bright-red complexion isn’t due to a severe sunburn.
“But as time goes on, I see what is much more important than public education about difference: educating Brenna about life, helping her to understand how God sees her and how He created her, and teaching her that her worth and her purpose are found only in God,” she said. “I want the light of both of my children’s differences to shine brightly.”
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