Courtney had a typical, uneventful pregnancy. But, immediately after she gave birth to her daughter, Brenna, there was a shocked silence in the hospital room. “My husband almost fainted because of her appearance,” Courtney said. Everyone immediately knew there was something wrong. Later that evening, a pediatric dermatologist diagnosed Brenna with Harlequin Ichthyosis, the rarest most severe form of Ichthyosis.
Daily Care for Harlequin Ichthyosis Can be Overwhelming
“I had no idea of the vital role the skin plays for our bodies,” Courtney said. The day after Brenna was born, Courtney and her husband were speaking to Brenna’s medical team about pain management for Harlequin Ichthyosis rather than going home instructions. Courtney then realized that Brenna’s condition was critical.
Brenna’s skin lacks the protein that helps the skin layers form correctly. Her body recognizes there is an error in her genetic code and it tries to make up for it by overproducing skin. “She makes skin about 10x faster than we do,” Courtney said. The problem is her body can’t shed the skin fast enough so it’s thick, peels constantly, and is very dry.
“Her care is completely constant,” Courtney said. Every day Brenna has to have a long bath where they have to rub off excess skin. They apply Aquaphor lotion to her skin multiple times a day in an effort to keep her skin from becoming too dry. The family also has to be careful about germs because Brenna’s skin is prone to infections that are very painful for her. Her skin doesn’t regulate her body temperature very well, additionally, she can’t sweat. Because of this, Courtney has to be aware of the weather and dress Brenna accordingly.
Young Girl’s Life is Inspiring to All Who Meet Her
For the longest time, Courtney and her husband were worried about Brenna’s future with her Harlequin Ichthyosis disorder. However, Brenna’s determination and confidence shows her parents that nothing will hold her back. The day Brenna started kindergarten was a memorable day for Courtney. She watched Brenna confidently get up in front of her classmates and tell them about her skin. “It made me so proud as a mother,” Courtney said.
Brenna’s confidence inspires many people now that she is older. The beginning of her life, however, inspired those closest to her, her family. A few days after she was born, a family member shared with Courtney that he hadn’t prayed to God in years. But he was praying constantly after Brenna’s birth. “That was such a realization to me that God was working through her life and bringing others closer to him,” Courtney said.
Courtney and her husband believe Brenna has enriched their lives in more ways than one. “God has changed our perception of what is normal and what is beautiful. It’s not defined by what we look at but by what we choose to see,” Courtney said. They are able to find beauty and goodness in places they wouldn’t have seen before Brenna was born. Brenna has been a tremendous blessing to her family time and time again.
Advice: Keep Your Faith and Process Your Feelings
“I always encourage people to keep their faith,” Courtney said. When parents receive a diagnosis like Harlequin Ichthyosis, or worse, their first response is to be angry with God for doing this to them. But, by keeping your faith strong and processing your feelings, you will make it through the initial shock of the diagnosis. Courtney wrote a couple of books (That’s How You Know and A Different Beautiful) to help her process her feelings around raising a child with special needs.
When you are in the midst of grieving your child’s diagnosis, accept help when it is offered. Oftentimes, parents with a special needs child feel isolated. No one can relate to them or even know how to help which is why it’s okay to tell them HOW they can help you. Since Brenna’s birth, Courtney’s community, family, and friends have shown tremendous support. “We feel less isolated and it brings us together,” said Courtney.