When Courtney Westlake gave birth to her daughter, Brenna, she assumed that her new baby just needed to be cleaned off. Brenna had a thick white layer all over her body and Courtney just figured that is was tissue from the placenta. But as soon as she noticed the confused look of panic on the doctor’s faces, she knew something went wrong.
Courtney lived with her husband, Evan, and their one-year-old son, Connor, in central Illinois. in 2011, the couple was ecstatic to find out that they were having another child. The couple found out they were having a girl, and felt like their family would finally be complete. Evan even made jokes about learning how to braid hair. Soon, their life would turn out way differently than they expected.
Courtney’s pregnancy went along perfectly. Every one of her check-ups went normal, and it seemed like her baby was growing as she should. Right before her due date, the couple figured out what they would name their daughter: Brenna Helen Marie. Finally, on December 19, they brought their little one into the world.
As Courtney finished delivering Brenna, she only got to look at her newborn very briefly. She wasn’t expecting to see what she saw. Her skin was a deep shade of red and her body was covered with thick, white scales. Courtney just hoped it was harmless, but then she saw the look of worry in her doctor’s eyes.
Immediately the newborn was taken to the hospital’s nursery and then to the neonatal intensive care until. It was then that the couple realized something could be terribly wrong with Brenna. The thick scales that were on her little body couldn’t be wiped off – they were a part of her. Finally, they were told her diagnosis.
The couple was informed that Brenna suffered from a rare genetic disorder called Harlequin ichthyosis, which causes her body to produce skin 10 times faster than normal people, and there is no cure. Courtney was looking at Brenna through the NICU windows and realized how serious things were for Brenna.
The baby’s skin formed into thick patches with large red cracks in between. Because her skin was pulled so tightly across her body, Brenna’s fingers and toes were permanently shortened and couldn’t grow normally. Skin almost entirely covered her ears and nose and her eyelids were flipped inside out. If Brenna survived, she would be physically challenged for the rest of her life.
Because of her disease, Brenna’s skin wasn’t able to fight off infections. That meant that Brenna was at risk of dying. Five days after she was born, on Christmas Eve, Brenna caught a devastating infection in her blood that threatened her life. Her parents began praying for a Christmas miracle.
Little Brenna was able to fight off the infection. Finally, after two weeks of life, Brenna’s parents were able to hold her for the first time. In order for Brenna to survive the first few months of life, she would have to remain in the hospital and undergo many surgeries. But like any other parents, Evan and Courtney refused to give up.
After spending weeks in the hospital, Brenna was finally able to go home. Connor fell in love with his baby sister as soon as he met her. Even though there was no way they could prepare for it, the Westlakes were committed to giving Brenna the best life they could. Because Harlequin ichthyosis has many challenges they had to change their whole lives for Brenna.
Every single day, Brenna gets a long bath to exfoliate her skin and remove the excess. After the bath, Courtney puts petroleum jelly all over her body to keep her skin comfortable and moisturized. Because her skin can’t regulate her temperature, and her risk for infection is high, they have to constantly monitor it. Their daily schedule is difficult, but going out is quite a challenge, as well.
Brenna looks very different from little girls her age. The tight skin stunted her growth, so she is much smaller and her extremities shorter than normal. Her skin is deep red and constantly peeling. The over-production of skin kills her hair follicles, so she has very little hair. This means they get stares everywhere they go, which is something Courtney feels very strongly about.
When the parents bring Brenna out, people think she is extremely sunburned and judge them for it. Courtney wishes people wouldn’t judge Brenna on her looks. “When their child asks why Brenna is so red and swollen, why can’t we just be honest and say, ‘I don’t know, but it doesn’t matter how we look. We’re all unique’?” said Courtney. But no matter what, Courtney doesn’t let the negativity affect her family.
“Brenna is determined, extroverted, and sweet and sassy all at the same time. Our days are also full of uninhibited joy, real contentment, gratitude, and faith in God,” wrote Courtney on her blog. Their family has learned many things from raising a child who’s a bit different, and they hope to help other parents learn these things, as well.
Courtney published a book in August of 2016, called “A Different Beautiful.”The book is about the family’s experience with Brenna, and their journey of discovering a new kind of beauty that values everyone’s uniqueness. Aside from writing, Courtney is also a public speaker. She gives talks about raising children with disabilities and hopes that her own experience will help others.