What to expect when you hear the unexpected: cystic fibrosis diagnosis
Published 12:00 am Sunday, July 8, 2018
By Emma Rose
Rowan Public Library
In November 2012, a boy was brought into the world by ecstatic parents, Nathan and Brittany. The newborn was named Braydon Jude and immediately began stealing the hearts of everyone he met.
While in the hospital awaiting the results from the standard newborn screenings, Nathan stroked his first-born’s wrinkly forehead and muttered, “I can’t wait until you’re big enough to play Legos with me.” The test results came back. Braydon was born jaundiced, was not gaining weight, and had tested positive for cystic fibrosis.
One week later, Nathan and Brittany brought Braydon home and began learning everything they could about CF while also adjusting to the typical stresses and excitements of becoming new parents. They learned that CF is a complex disease and that its severity can vary widely.
Brittany was ready to use all resources to do whatever it took to keep her son happy and healthy. She made all of his meals at home, she gave him breathing treatments twice every day, she gave him his medicine at each meal and held him close, drying his tears when he had to have blood drawn and procedures done to monitor his condition every three months at Levine Children’s Hospital in Charlotte.
Due to Brittany and Nathan’s diligent care, Braydon is now a strong, healthy, energetic 5-year-old. He knows the importance of his daily routine of medicine and treatments and rarely complains.
Each morning and night Braydon undergoes a breathing treatment while wearing a special vest that vibrates his chest to ensure that the medicine helps break up any mucus build-up. His daily routine also includes taking pancreatic enzymes with every meal to ensure his pancreas is able to process fat and he is able to maintain a healthy weight. One of Braydon’s favorite routines is his weekly trip to the East Branch of Rowan Public Library with his Mimi.
Braydon knows more about the human anatomy than most children his age because of his experiences in and out of doctor’s offices. He has been known to teach educated adults about the human digestive system, stating “Food goes in your mouth, it goes down your throat and down into your belly. It goes in your small intestine and your large intestine and then you poop it out!”
Brittany has been a huge advocate for her son by raising money and awareness for the Cystic Fibrosis Foundation. She has donated her birthdays, organized teams to walk in the Great Strides events in Concord, and contributes whenever possible to others who support CF treatment research. Please visit www.cff.org/Charlotte to see how you can contribute too.
When asked what message she would like to share with the community on the topic of CF, Brittany said, “Even though it can be scary to hear someone has cystic fibrosis, they should not be treated any differently. Most people with CF are still able to do everything just like anyone else, like play sports. Now that the medicine is getting better and easier and the life expectancy is much longer, there is no reason not to be hopeful, optimistic and positive. It’s important to do what you can to lead a normal life and be happy with all of the time together you have.”
Being a new parent can be scary, even without any medical complications, but if knowledge is power, then Rowan Public Library is one of the most powerful resources in this area for new parents. RPL houses thousands of resources specifically on the topic of parenting, hundreds of which are available online and hundreds in video format.
Have you gotten a spooky diagnosis? RPL provides patrons with access to health and wellness resources through NC LIVE completely free. Browse databases such as KidsHealth, HealthFinder, MayoClinic, The Family Health Database, to use information to fight fear.
Braydon’s positivity, intelligence and sense of humor have been a joy and blessing to the East Branch. He is excited to begin kindergarten this fall and is now big enough to play Legos with his father. He also plays Legos at Rowan Public Library’s Lego Free-Play, which will resume this fall.
Summer Reading: Registration is open for all age groups, children, teen and adults. Consult your nearest branch for details. Headquarters, 704-216-8228; East, 704-216-7838; South 704-216-7727.
School age summer reading program: Ryan Dial-Stanley is a traditional storyteller from the Lumbee Tribe. In this program, he will describe and demonstrate different indigenous performing arts, including flute and drum, storytelling and dancing. Children will learn about North Carolina’s native peoples and their traditions. While the School Age Summer Reading program is designed for rising 1st through 5th graders, all ages are welcome; an adult must accompany children under 9. Tuesday, 2 p.m., South; Wednesday, 2 p.m., East; Thursday, 10 a.m., Cleveland, and 2 p.m., headquarters.
Teen summer reading: Libraries are the bomb! Make your own bath bombs with a variety of colors, scents and plenty of glitter. Bath bombs not your thing? No worries, you’ll make some slime, too. Monday, 3:30 p.m., East; Tuesday, 3:30 p.m., headquarters; Thursday, 3:30 p.m., South.
Adult summer reading: Dance instructor Diana Moghrabi leads a fun evening of social swing dancing. From first-timers to experts, all are welcome. Refreshments will be served. Monday, 6:30 p.m., headquarters.
Saturday cinema: Meet “Ferdinand” (2017, 108 min.) in this PG-rated film. All ages are welcome; however, an adult must accompany children under 9.
Genealogy Workshop: Saturday, July 21, 10 a.m. This class will discuss the information that can be garnered from church records and where to find such records. The class will examine local, denominational and global resources for church records. This event, co-hosted by the Genealogical Society of Rowan County and the Edith M. Clark History Room of RPL, is free and open to the public. Call 704-216-8253 for more information.
Displays: Headquarters, Piedmont Players and Carolina Historic Metal Detecting Group, agriculture in gallery exhibit; East, hand-crafted jewelry by Myrtis Trexler; South, lunchbox memorabilia by Sharon Ross.
Literacy: Call the Rowan County Literacy Council at 704-216-8266 for more information on teaching or receiving literacy tutoring for English speakers or for those for whom English is a second language.