Cystic Fibrosis

Answers to your biggest questions about CF in baby.
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By Jennifer L.W. Fink, Registered Nurse
Updated March 2, 2017
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What is cystic fibrosis in babies?

Cystic fibrosis (CF) is an inherited disease that affects the lungs and digestive system. It affects the epithelial cells, which line the lungs, liver, pancreas, digestive tract and reproductive system, and causes those cells to secrete thick, sticky mucus that interferes with the functioning of those organs.

That thick mucus can clog up the airways and make patients prone to pneumonia and other respiratory infections. It also gums up the pancreas and interferes with the secretion of enzymes that are important for digestion. As a result, kids with CF have difficulty absorbing nutrients and gaining weight.

In the past, people with CF typically died while they were still children. Today, most people with CF live into their 30s, 40s or even 50s.

What are the symptoms of cystic fibrosis in babies?

The most common symptom of CF in babies and toddlers is failure to gain weight, coupled with frequent large stools. “Kids have those symptoms because they’re not absorbing nutrients, because their pancreas can’t make the enzymes to absorb them,” says Katherine O’Connor, MD, a pediatric hospitalist at The Children’s Hospital at Montefiore in New York City.

Sometimes, though, CF isn’t diagnosed until later in childhood — usually it’s after a child has experienced years of breathing problems and frequent bouts with pneumonia.

Are there any tests for cystic fibrosis in babies?

Believe it or not, a sweat test is usually used to detect cystic fibrosis. Kids with CF have high levels of salt in their sweat, so the test checks to see if their sweat is saltier than average.

Some states now screen all newborns for CF. It’s important to remember, though, that a positive result on a screening test does not mean that your child has CF; it means that additional testing is needed to figure out what’s going on with your child.

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How common is cystic fibrosis?

CF is more common in white kids of northern European ancestry. Approximately 1 out of every 3,000 Caucasian children born in the US has CF. About 1 out of every 17,000 African Americans and 1 out of every 90,000 Asian Americans has CF.

How did my baby get cystic fibrosis?

CF is an inherited disease caused by a genetic mutation. Both parents have to have the mutated gene for the child to have CF.

What’s the best way to treat cystic fibrosis in babies?

“Children with cystic fibrosis get a lot of treatments to help clear the mucus from their lungs, including saline treatments to help thin the mucus and make it easier to clear,” O’Connor says. “They might also be on chronic antibiotic therapy to keep infections away.” Parents may also have to help perform certain maneuvers, such as clapping on the child’s chest while the child’s head is lowered, to help him clear his lungs.

Kids with CF also need medication to replace their missing pancreatic enzymes so that they can effectively digest food. A nutritionist can work with you to help determine the best diet for your child.

Other medications, such as antibiotics and meds to help improve breathing, are used as needed. Children with CF may occasionally need to be hospitalized. Some kids may eventually need a feeding tube, lung transplant or other procedure.

What can I do to prevent my baby from having cystic fibrosis?

If CF runs in your family, you and your spouse might want to consider genetic testing. Genetic testing will tell you if you carry the mutated CF gene. If you both have the mutation, your future kids have a 25 percent chance of having CF.

What do other moms do when their babies have cystic fibrosis?

“It seems like there are some mild cases. My son has some digestive issues and is congested, but he’s not having trouble gaining weight. We just got his sweat test result and have been referred to a specialist. I feel like there isn’t much info out there, and all there is to look at on the Internet are scary stats.”

“My son has mild CF. He’s two and a half, and the only treatments he’s needed so far are nebulizer treatments when he has a cold and occasionally an antibiotic if he has a cold that is sitting in his chest. I haven’t found a lot of info out there for mild cases like my son, who probably wouldn’t have been diagnosed if he were born prior to the newborn screenings being done in my state. He hasn’t had any issues with gaining weight or digestive problems.”

“My son was diagnosed at 10 days with CF, and we live in the Chicago area. He’s a great and active seven-month-old, and we’re giving him enzymes, nebulizer and therapy every day to help him out.”

Are there any other resources for cystic fibrosis?

The Bump expert: Katherine O’Connor, MD, a pediatric hospitalist at The Children’s Hospital at Montefiore in New York City

Please note: The Bump and the materials and information it contains are not intended to, and do not constitute, medical or other health advice or diagnosis and should not be used as such. You should always consult with a qualified physician or health professional about your specific circumstances.

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