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How Are Babies, Toddlers, & Preschoolers Affected by Cystic Fibrosis?

Cystic fibrosis (CF) is a chronic condition that requires daily care, even in infants and small children who otherwise may look healthy. This time-consuming daily routine puts great stress on caregivers, but this early care helps prevent early organ damage and helps the child live a longer, healthier life.1

The health challenges of cystic fibrosis, such as lung infections, gastrointestinal problems, and trouble growing may all appear in the infant and preschool years. Your CF medical team will be able to help suggest tips and techniques to cope with these challenges.

Weight management

It is recommended that babies and preschoolers with CF should weigh at or above the 50th percentile for their height/length, which may look slightly chubby. A higher BMI helps a young child grow properly and is linked to better lung function later in life.1,2

To maintain a healthy weight, babies and small children with CF need a high-fat, high-protein, high-calorie diet, and up to a quarter teaspoon of salt added to their food each day.

Nutrition and feeding behaviors

Babies, toddlers, and preschoolers with CF often fail to gain weight because acid reflux makes them feel discomfort, such as a burning sensation in the chest, and slow emptying of the stomach makes them feel full. Babies may appear healthy but are actually malnourished.

Because of their gastrointestinal system does not work well, babies and small children with CF will need pancreatic enzymes and vitamin supplements added to their food to help them get the nutrients they need.

These children are also prone to iron deficiency (anemia), constipation, acid reflux, and zinc deficiency. Parents of babies with CF report higher rates of unwillingness to try new foods, refusal to take medicines, having a poor appetite, and preferring to drink than eat.1,2

Babies and preschoolers who fail to gain weight and grow may need to have an enteral feeding tube (feeding tube or g-tube) surgically installed so that they get enough calories and nutrition.

Gastrointestinal issues

Many gastrointestinal (GI) issues accompany cystic fibrosis and may begin appearing in infancy. Malabsorption, constipation, diarrhea, acid reflux (GERD), and greasy, bulky stools are all common among babies and preschoolers with CF and contribute to loss of appetite and lack of cooperation with airway clearance.2

Distal intestinal obstruction syndrome (DIOS), overgrowth of bacteria in the small bowel overgrowth, and pancreatitis may also occur. A fecal elastase test will help determine whether pancreatic function needs to be addressed to combat these issues. Good nutrition, extra fluids, and enzymes all help the GI system work better in young children with CF.

Breathing issues

Lung disease may begin in babies and preschoolers with CF before any symptoms are noticed. That is why antibiotics tend to be used at a lower threshold of illness and for longer periods of time than in other children. This is designed to keep the lungs as healthy as possible.

Parents will have to perform manual airway clearance techniques for their child until they get old enough to start performing some of these tasks on their own or use the vest around age 2 to 3.

Parents should avoid exposing their child with CF to second-hand smoke, and scents from candles, fires, and airborne particles.

Infection prevention and control

To help keep a young child with CF healthy, the child and everyone close to them should be up-to-date on their vaccines, including the flu and pneumonia vaccines. They should avoid close contact with other children that have CF, staying at least six feet apart at all times. House cleaning, disinfecting bottles and nebulizers, and other infection prevention and control measures such as frequent handwashing are ways that adults can keep their child with CF as healthy as possible.1-3

Socializing

Just as with other children, playgroups, play centers, daycare, and preschool are great ways for young children with CF to socialize and learn. Parents will need to teach other parents, babysitters, daycare staff, and teachers about their child’s special needs and check the cleanliness of the facility.

In preschool, teachers will need to learn about the child’s coughing and need for more frequent bathroom and water breaks, extra food and time to take medicines and enzymes.

Preschool is a particularly good time for the child to begin learning about eating and taking enzymes away from family. Problem meal-time behaviors such as refusing to eat or take enzymes, or avoiding food are common problems that must be handled.

Written by: Jessica Johns Pool | Last reviewed: September 2019
  1. Cystic Fibrosis Foundation, Borowitz D, Robinson KA, et al. Cystic Fibrosis Foundation evidence-based guidelines for management of infants with cystic fibrosis. J Pediatr. 2009;155(6 Suppl):S73–S93. doi:10.1016/j.jpeds.2009.09.001.
  2. Lahiri T, Hempstead SE, Brady C, et al. Clinical Practice Guidelines From the Cystic Fibrosis Foundation for Preschoolers with Cystic Fibrosis. Pediatr. 2016;137(4):e20151784.
  3. Cystic Fibrosis Foundation. Introduction to Cystic Fibrosis. Available at: https://www.cff.org/Intro-to-CF.pdf. Accessed 5/21/2019.