She first thought that the “white covering” all over her daughter’s body could simply be “wiped off,” but she later realized it was actually her daughter’s skin.
Courtney and Evan Westlake were happily living their life with their son Connor when they discovered that Courtney was pregnant again. The couple and their families were more excited especially when they learned that Courtney was actually pregnant with a girl.
But when Brenna Helen Marie arrived on December 19, 2011, her mother was shocked to see her. She realized something was wrong, especially when the hospital staff were obviously in a panic after seeing her daughter.
“When our daughter was first born, I just thought she needed to be wiped off. She had a thick whiteness covering her entire body, and there was a sort of confused panic from the medical staff in the room,” Courtney wrote on her blog. “She was whisked out of our room almost immediately and taken to the nursery before being transported to the nearby neonatal intensive care unit.”
“Somewhere in all of the confusion, we realized that she couldn’t simply be wiped off. The thick covering on her was her skin,” she added.
Brenna was diagnosed with a rare and severe skin disease called Harlequin Ichthyosis (har-la-kwin ick-thee-oh-sis). Her skin was formed in thick plaques with deep red fissures in between, pulling so tightly across her body that her fingers and toes are permanently shortened, her eyelids were flipped inside out, and her nose and ears were almost completely covered by skin. The disease is untreatable and is often fatal.
Courtney often comes across strangers who point, make loud comments or ask insensitive questions when she’s out with Brenna. It makes her sad. She can understand that children are curious about Brenna, since she has such a unique appearance. Other parents would also pull their children away, and told them to keep quiet when around her.
“Why do parents try to avoid talking to people who look different? What are they afraid of? They could just come up to me and ask how old Brenna is,” Courtney says, and continues:
“When their child asks why Brenna is so red and swollen, why can’t they just be honest and say ‘I don’t know, but it doesn’t matter how we look. We’re all unique’?”
Courtney hopes that people learn how much of a bright and loveable person Brenna was, and how she is different but still beautiful.
What is Ichthyosis?
Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix “ichthy” is taken from the Greek root for the word fish. Each year, more than 16,000 babies are born with some form of ichthyosis.
At present time there is no cure for ichthyosis, however dedicated researchers and physicians have and continue to develop effective ways to help manage the disorder.