Since no one in the family had Cystic Fibrosis (CF), and less than 5% of the people diagnosed with CF are Black, the thought that her child could have CF never crossed Terri’s mind. It was during a routine pregnancy screening when Terri learned that both she and her baby’s father were carriers of CF, so they were determined to learn as much as they could. At two weeks old, baby Robyn’s diagnosis was confirmed.
The family was referred to the Cystic Fibrosis Center at SSM Health Cardinal Glennon Children’s Hospital. That’s where they met Michael Smiley, MD, and his CF team. “The best advice Dr. Smiley gave me was not to rely on online information because it’s often incorrect and outdated,” says Terri.
What is cystic fibrosis?
Terri learned that CF is an inherited genetic disease that changes the way the body produces mucus, sweat, and digestive juices, which can clog up tubes and passageways in the body, causing damage to the lungs, digestive system, and other organs.
It is one of the most common genetic disorders among Caucasians, occurring in one of every 3,200 live births. It is much rarer in other populations, but currently close to 40,000 children and adults in the United States are living with CF, according to the Cystic Fibrosis Foundation.
A Healthy Partnership
Baby Robyn regularly visits the Cystic Fibrosis Center at Cardinal Glennon Children’s Hospital, more often in the beginning and now approximately every four to six weeks. Each time her weight is checked, throat cultures are taken, and they speak with a variety of team members, including a nutritionist about meal and snack planning.
According to Terri, "Kelsey from the pharmacy has been a big help managing medications and providing needed supplies, like Robyn’s nebulizer."
Today, life is hectically wonderful for Terri. Robyn, like any other active toddler, loves to be outside, run, and play. Her family looks forward to a bright future, thanks in great part to the incredible CF team at Cardinal Glennon Children’s Hospital.
"My advice for other newly CF-diagnosed parents is to enjoy life. Partner with a great health system, like Cardinal Glennon Children’s Hospital and let your children live!"
More Resources
May is Cystic Fibrosis Awareness Month. Visit the Cystic Fibrosis Foundation and the Cystic Fibrosis Center at SSM Health Cardinal Glennon Hospital to learn more.
