Interstitial Lung Disease

Boston Children’s Hospital specializes in treating pediatric respiratory diseases, including interstitial lung disease (ILD or chILD).

Interstitial lung disease is not a single disease but rather, is a group of rare lung diseases that range from mild to severe and can make it difficult to breathe. This is because these lung diseases can interfere with the exchange of oxygen and carbon dioxide and can cause fluid and other materials to collect in the lungs.

Different types of interstitial lung diseases require different forms of treatments and can have different outcomes.

Types of interstitial lung disease

The types of interstitial lung diseases we treat include:

Interstitial lung disease causes

The cause of interstitial lung disease can be different for different children and can vary by type. For instance:

  • Some babies are born with ILD, and some types of ILD are inherited. But many children don’t become affected with ILD until later in childhood.
  • For some children, ILD will show up after a “trigger” event, such as a cold or viral infection.
  • ILD can be caused by another disease, or by treatments for other medical problems.

Signs and symptoms of interstitial lung disease

Even though there are many diseases in the interstitial lung disease category, a lot of them share certain signs and symptoms. Not every child will have every symptom, but symptoms could include:

  • Rapid breathing, difficulty breathing, or shortness of breath
  • Using rib or neck muscles to help breathe
  • Failure to thrive: failure to gain weight and/or height
  • Crackles, wheezing, or other abnormal sounds in lungs
  • Repeated occurrences of pneumonia, bronchitis, and/or cough

Children with multiple symptoms may benefit from an evaluation for ILD by one of our pediatric pulmonary specialists.

Our approach to interstitial lung disease

Our Interstitial Lung Disease Program consists of doctors, nurses, nutritionists, and social workers who coordinate to provide a full diagnosis and evaluation of each child with ILD.

We work with families to develop an individualized treatment plan based on the child’s specific diagnosis. We also help families arrange home health care support and supplies, transportation services, and visiting nursing services.

If needed, our Division of Pulmonary Medicine provides expert review and opinion, as well as other services and support for lung transplantation.

Advancing interstitial lung disease research

The clinicians in the Division of Pulmonary Medicine are committed to advancing the understanding of interstitial lung disease and other pulmonary diseases (lung diseases) through a variety of research efforts.

Our ILD program is a part of the Children's Interstitial Lung Disease Research Network (ChILDRN), which is a group of physician scientists from across the country who work together to conduct research and promote awareness of these rare disorders. ChILDRN also developed the pediatric interstitial/diffuse lung disease patient registry and works closely with the Children's Interstitial Lung Disease (ChILD) Foundation.