Sisters Melissa and Makayla have a lot in common. The 11- and 8-year-olds are both passionate about performing, enjoy riding bikes and love playing with their three-legged rescue dog named Amethyst. They also both have cystic fibrosis.
Though their journeys have been different, the care that Melissa and Makayla have received at the Claude Prestidge Cystic Fibrosis Center at Children's Health℠ has allowed both girls to thrive despite tremendous challenges.
A family's journey with cystic fibrosis begins
When Traci was pregnant with her first daughter, Melissa, she and her husband, Paul, discovered they were both carriers for cystic fibrosis (CF), a genetic condition that affects mucus production which leads to lung infections and breathing difficulties as well as issues in the digestive system. Though they chose not to pursue further amniotic testing during Traci's pregnancy, Traci and Paul knew there was a one in four chance that Melissa would be born with cystic fibrosis. Her diagnosis was soon confirmed after her birth in 2007.
"Melissa was hungry all the time," says Traci. "And she just wasn't gaining any weight. We thought something may be wrong, and then DNA testing confirmed that Melissa had CF."
At 3 weeks old, Melissa and her family were introduced to Michael Brown, M.D., a pediatrician at Children's Health and Clinical Professor of Respiratory Medicine at UT Southwestern. Traci says though the diagnosis was difficult to receive, she felt more optimistic after Melissa's first appointment.
"We were overwhelmed at first, especially because you can find so much information on the internet that makes you expect the worst," says Traci. "But once we got to the clinic and sat down with Dr. Brown, he explained what we could expect and reassured me that she was going to be okay."
Dr. Brown started Melissa on a regimen of pancreatic enzymes because the buildup of mucus in her pancreas had stopped the absorption of food. The enzymes helped improve the absorption of vital nutrients and aided her body in digestion. Almost immediately, she began eating and sleeping better and began gaining weight.
"She was a much happier baby," says Traci. "It gave us hope that things would be ok."
Over the next few years, Melissa was monitored closely by Dr. Brown. At first, she didn't have any severe respiratory problems often seen in cystic fibrosis patients, such as shortness of breath, chronic cough and wheezing. But by age 3, Melissa required daily breathing treatments and began regular high-frequency chest wall oscillation treatments wearing an inflatable vest that vibrates rapidly to help break up the mucus in her lungs. At first, it was daunting to fit it all in with their family's schedule, but it soon became just part of their everyday routine.
"We adjusted to our new normal," says Traci. "If we had somewhere to be, we'd just get up earlier to make time for treatments and make sure we always carried her medications with us."
Melissa welcomes a little sister
In 2010, Traci and Paul welcomed their second daughter, Makayla. She was also diagnosed with cystic fibrosis through her newborn screening. She started seeing Dr. Brown when she was 4 weeks old. Though her parents had experience caring for a child with a severe chronic illness, her mom says it was still a challenge.
"We knew more about what to expect the second time around, but it was still overwhelming because now we had two daughters with special medical needs to care for," says Traci.
Though Makayla didn't experience the severe respiratory symptoms that her older sister Melissa did as a toddler, she also began regular breathing and vest treatments at the age of 3.
Melissa reaches a crossroads in her journey
Melissa, however, was in and out of the hospital with respiratory issues for the next several years. Around her sixth birthday, Melissa's parents noticed that she was losing weight and had little to no appetite. They began working with Meghana Sathe, M.D., a pediatric gastroenterologist and Co-Medical Director of the Claude Prestidge Cystic Fibrosis Center at Children's Health and Associate Professor at UT Southwestern, to find a solution. They tried everything to get Melissa to gain weight, but her body just couldn't keep up. Dr. Sathe recommended that Melissa have surgery to insert a G-tube directly into her stomach to ensure she received the nutrition she needed. For her parents, it was a heartbreaking crossroads in her care.
"It was hard for us to accept that she needed the G-tube because it made us feel like we had failed in caring for our daughter," says Traci. "But after talking with Dr. Sathe and talking to other families who had gone through a similar process, we were able to see the positive sides of it. And today, five years later, we know it was the best decision we could have ever made as there's no question it saved her life."
Melissa continues to deal with respiratory issues that require her to wake up early for school for daily breathing treatments and take pills, vitamins and enzymes. Still, she's an active pre-teen who is involved in her school and was recently nominated for student council.
"Melissa is the type of kid who doesn't want to sit on the sidelines; she wants to be the leader," says Traci. "She understands what she needs to do to stay healthy, and we've tried to empower her in her own care so she can live her life to the fullest the way she wants to."
At 8 years old, Makayla, like her sister, is beginning to show signs of a decreased appetite and weight loss, which Dr. Sathe is working to address. Still, she remains busy with school, friends and her newest passion: cheerleading.
Sisters stay active together
As research continues to show how exercise helps strengthen the lungs, more patients with cystic fibrosis like Melissa and Makayla are being encouraged to stay active while being mindful of their bodies' needs, something that Traci says has gotten easier as the girls get older.
"We have always told the girls that they should do whatever it is they want to do – riding their bike, swimming in the summers or joining their classmates in PE," says Traci. "As they're getting older, they're learning even better how to manage their symptoms and recognize when they need to take a break."
Melissa and Makayla will be followed closely by the cystic fibrosis care team into adulthood. Traci says she's encouraged by the advancements being made in the treatment of CF and the relationships they've built with everyone at Children's Health. She currently serves on the Parent Advisory Council for the clinic and is passionate about providing a parent's point-of-view on ways to improve patient care and the experience for other families like hers.
"It can be difficult to learn to trust someone else with your children's care," says Traci.
"But from our first appointment for Melissa, now 11 years ago, we've have a huge team of people that have become just like family to us. I always encourage other families to keep searching until they find their own support system like we have at Children's Health."
The Children's Health Cystic Fibrosis Care and Teaching Center manages the outpatient and inpatient care of approximately 400 infants, children and adolescents. Learn more about our program and services.