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All About Cystic Fibrosis Symptoms in Babies

Babies may begin showing signs of cystic fibrosis shortly after they are born. Babies with cystic fibrosis may have prolonged jaundice, trouble passing meconium, and more frequent lung infections.

According to the Centers for Disease Control and Prevention (CDC), approximately 35,000 people in the United States are affected by cystic fibrosis. People with cystic fibrosis develop a buildup of thick, sticky mucus in their bodies. This can lead to trouble breathing and digesting food.

Read on for more information about how to tell whether your baby may have cystic fibrosis and what other conditions to expect if your baby is diagnosed with cystic fibrosis.

Learn more about cystic fibrosis.

Symptoms of cystic fibrosis in babies can include:

  • frequent coughing
  • wheezing or shortness of breath
  • lung and sinus infections
  • salty-tasting skin
  • greasy, bad-smelling loose, or constipated bowels
  • delayed growth and poor weight gain

Some individuals with mild cystic fibrosis may not show symptoms until closer to adulthood.

Cystic fibrosis is inherited genetically. Both parents must pass along a genetic mutation responsible for cystic fibrosis for a baby to be born with symptoms.

Cystic fibrosis affects the body’s ability to pass chloride ions and water through cell membranes. This produces thick, sticky mucus around the lungs, pancreas, and other organs. Additional genetic mutations and environmental factors may explain why some individuals are more severely affected by cystic fibrosis, even as babies.

Babies with cystic fibrosis may have mucus build up in the lungs and digestive tract. When this mucus builds up in the lungs, it can cause breathing problems and infections. The digestive tract can block the pancreas and make it difficult to break down food.

Treatment of cystic fibrosis often depends on the symptoms an individual is experiencing.

It may include:

  • antibiotics to treat or prevent infections
  • mucus thinning medications
  • bronchodilators (breathing treatments) to relax and open airways
  • anti-inflammatory medicines like Ibuprofen to reduce swelling in the lungs (but not in children under 6 months of age)
  • hypertonic saline to thin mucus in the airways

Your baby’s doctors may suggest different therapy activities to keep your baby active and vibrate their chest to loosen mucus. Because weight and growth issues are common for children with cystic fibrosis, your child’s doctor may also suggest ways to increase the amount of nutrients your baby gets.

If cystic fibrosis becomes life threatening, surgery for procedures like a lung or liver transplant may be necessary, even in very young children. It’s important that babies with cystic fibrosis not be exposed to smoke and other potential environmental triggers.

Currently, approximately 50% of people with cystic fibrosis live longer than 40 years. Continuing medical advances may help babies born with cystic fibrosis to live even longer.

Cystic fibrosis tends to worsen over time as more mucus builds up, but treatment options are also advancing.

Where can I get support if my baby is born with cystic fibrosis?

If your baby is diagnosed with cystic fibrosis, their doctor may be able to suggest a local support group or therapist. You may also find individual or group support through the Cystic Fibrosis Foundation.

How are babies diagnosed with cystic fibrosis?

All babies born in the United States have blood testing for cystic fibrosis in their first days of life. Depending on blood test results, a sweat test and other diagnostic testing may be performed to confirm a baby has cystic fibrosis. Prenatal diagnostic testing can also be used to determine whether a child has cystic fibrosis when parents are known carriers of a cystic fibrosis gene mutation.

Are babies of certain ethnicities more likely to have cystic fibrosis?

In the United States, 1 in 2,500 to 3,500 white babies will be born with cystic fibrosis. This is much higher than the number of Black or Asian newborns born with cystic fibrosis in the United States. Only 1 in 17,000 Black babies and 1 in 31,000 Asian children are born with cystic fibrosis.

Some babies begin to show symptoms of cystic fibrosis shortly after they are born. Symptoms can include trouble passing meconium and frequent lung infections. Babies with less severe cystic fibrosis may not show symptoms until later in life.

With the help of standard newborn blood screening, cystic fibrosis can be quickly diagnosed in babies and treatment can begin.

If you know you are a carrier of a cystic fibrosis gene mutation, a doctor can advise on prenatal screening options.

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