At age 3, Breana Schroeder weighed 40 lbs. and by age 6 she hadn’t gained any weight. Her pediatrician told her mom, Caryn, “she will probably just be your skinny kid; she just has a high metabolism.” Not satisfied with that answer, Caryn demanded to see a pediatric gastroenterologist who looked at Breana’s symptoms and diagnosed her with cystic fibrosis (CF) within the hour.
Cystic fibrosis is a life-threatening genetic disease that affects the lungs and digestive system. A defective gene causes mucus in the body to thicken. The thick, sticky mucus builds up in the body’s organs, especially the lungs and pancreas.
To confirm her diagnosis, Breana was given a sweat test to measure the amount of chloride in her sweat – an indicator of CF. Living in Long Beach, Breana was referred to the Cystic Fibrosis Center at Miller Children’s & Women’s Hospital Long Beach.
“When build-up happens in the lungs, it makes it difficult for the person to breathe,” says Terry Chin, M.D., associate medical director, Cystic Fibrosis Center, Miller Children’s. “Build-up in the pancreas prevents the releases of digestive enzymes that help the body break down food, which leads to poor growth.”
Since CF is so complex, Miller Children’s uses a team approach that includes her pediatric pulmonologist, Terry Chin, M.D.; her gastroenterologist, Richard Mathis, M.D.; specialized nurses, registered dietitians, physical therapists, geneticists and more, who work together to ensure Breana grows and maintains strong lungs.
“We were shocked in the beginning,” says Caryn. “We had never heard of CF. Julia Greenwald, the CF social worker, has been a savior to us. She would come visit us in the hospital and explain new concepts. We learn something new each time.”
In December 2013, Breana was still struggling to gain weight. With careful consideration, it was decided the best option for her was a Gastrostomy tube (G-tube).
A G-tube supplements food intake without having to eat or drink. The G-tube is inserted directly into the stomach and a small tube is always present outside the stomach.
Each night, Breana prepares for her tube feeding. Using a liquid nutrition product, Breana ingests 1,500 calories while she sleeps. After three hours, she unhooks herself, turns off the machine and goes back to sleep.
“Before we got the feeding tube, I was looking everywhere for different ways to help her eat,” says Caryn. “I told Breana ‘we were going to gain weight together and show this CF we could do it.’ I gained weight and Breana only gained 5 oz. At that point, I learned it’s not my fault, it’s not her fault, it’s the disease and we need to do whatever it takes. That’s when we made the call to get the G-tube. It’s been the best decision we’ve ever made.”
In the last year and a half, Breana has gained 22 lbs. and grown 4.5 inches. It’s been eight years since Breana was diagnosed and now she’s developed a routine. Because CF affects several different parts of the body, Breana’s individualized treatments are complex.
Breana wakes up around 5:30 a.m. and does an airway clearance treatment using an inflatable vest that vibrates the chest to help loosen and thin mucus.
She takes three medicines through her nebulizer, which administers her medication in the form of a mist inhaled, followed by another inhaled medication, an inhaler and a nasal spray. She repeats this schedule in the evening. On average, Breana takes 518 pills a week.
Every three months, her care team assesses her treatment plan and determines if any changes need to be made.
Riding the Waves
Today, she is an award winning tandem surfer competing throughout the U.S. Surfing acts as a natural treatment for people with CF, because the salt water helps clear the mucus.
“I have kept Breana laughing, doing sports and being outside – everything on the positive side,” says Caryn. “Of course we have our down falls, but I treat her like any other kid.”
When she’s not in the water, she remains active through cheerleading and tumbling. Next year, Breana will be joining the JV cheer team at Wilson High School in Long Beach, where she is striving to be a straight A student.