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PubMed This is a summary of 43 peer-reviewed journal articles Updated
Pediatrics

Congenital Lobar Emphysema (CLE) Resource Guide

At a Glance

Congenital Lobar Emphysema (CLE) is a rare developmental lung condition in infants that causes overinflation in the lung lobes. Depending on the severity of the baby's respiratory distress, treatment involves either careful monitoring or a surgical procedure called a lobectomy.

Welcome. If you have just received a diagnosis of Congenital Lobar Emphysema (CLE) for your infant, you are likely feeling a mix of fear and confusion. Take a deep breath. While CLE is a rare developmental lung condition, pediatric specialists understand it well and treat it successfully.

This guide is designed to empower you with the knowledge you need to navigate your child’s care, communicate effectively with specialists, and confidently make treatment decisions.

Guide Contents

01

Understanding Congenital Lobar Emphysema (CLE)

Learn about Congenital Lobar Emphysema (CLE) in infants. Understand the causes of lung air trapping, treatment options like lobectomy, and what to expect.

02

Symptoms, Diagnosis, and Preventing Misdiagnosis in CLE

Learn the signs of Congenital Lobar Emphysema (CLE) in infants. Understand respiratory distress symptoms, contrast CT scans, and how to avoid misdiagnosis.

03

Navigating Treatment: Surgery vs. Monitoring

Explore treatment options for Congenital Lobar Emphysema (CLE). Learn when lobectomy surgery is necessary and when watchful waiting is safe for your baby.

04

Building Your Baby's Care Team and Crucial Screenings

Learn how to build the right multidisciplinary care team for your baby's Congenital Lobar Emphysema (CLE) and why a heart screening is vital before surgery.

05

Life After Treatment: Long-Term Outlook and Monitoring

Learn about the long-term outlook for children with Congenital Lobar Emphysema (CLE). Understand compensatory lung growth, monitoring, and life after surgery.

Common questions in this guide

What is Congenital Lobar Emphysema (CLE)?
Congenital Lobar Emphysema (CLE) is a rare developmental lung condition in infants. It causes one or more lobes of the lungs to become overinflated with air, which can lead to respiratory distress.
How is CLE treated in infants?
Treatment for CLE is determined by the severity of your baby's symptoms. It generally involves either close monitoring at home or in the hospital, or a surgical procedure called a lobectomy to remove the affected portion of the lung.
Will my baby need a specialized care team for CLE?
Yes, your baby will need a coordinated care team of pediatric specialists. This team typically includes pediatric surgeons to discuss operative options and specialists to perform crucial screenings, such as heart evaluations, which are standard for babies with CLE.
What is the long-term outlook for a baby with CLE?
Infant lungs have an incredible capacity to grow and adapt over time. With appropriate treatment and long-term monitoring by specialists, children can typically lead healthy, active lives even if they require a lobectomy early on.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What stage of the diagnostic process are we currently in, and what is the immediate next step?
  2. 2.Which specialist will be the main point of contact for coordinating my baby's care plan?
  3. 3.Can you connect us with a social worker or child life specialist to help us navigate the hospital system?

Questions For You

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This guide provides educational information about Congenital Lobar Emphysema (CLE) to help parents and caregivers. It does not replace professional medical advice, so please always consult your pediatric care team regarding your child's specific diagnosis and treatment.

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