What is children’s interstitial lung disease (chILD)?

Children’s interstitial lung disease (chILD) is the name for a group of rare lung conditions found in infants, children and teenagers. On this page, find out more about chILD.

On this page:

What is chILD?

Children’s interstitial lung disease (chILD) is a group of rare lung conditions found in infants, children and teenagers. They are grouped together because they share some common features. ChILD causes problems in different parts of the lung:

  • in the airways (breathing tubes), or
  • in the alveoli (air sacs), or
  • in the interstitium (the tissue surrounding the air sacs).

If your child has chILD, they may have low blood oxygen levels, difficulty breathing, frequent chest infections, or have difficulty with exercise.

There are more than 200 types of chILD. You can find out about specific conditions on the chILD Lung Foundation website. chILD conditions are often long-term, meaning there isn’t a cure, but some types of chILD can get better over time. Treatment can help prevent more damage and infections and improve your child’s symptoms.

Can adults also get chILD?

Adults can also get interstitial lung disease (ILD), including pulmonary fibrosis. But adult ILDs are very different to chILD.

chILD or DLD?

When children’s interstitial lung disease was first defined, most doctors thought chILD conditions are always related to problems with the interstitium (the network of tissue that supports the air sacs in your child’s lungs).

With more research, it was found some chILD conditions involve other parts of the lung, including the:

  • airways
  • airspaces
  • blood cells in the lung (called the vasculature)
  • linings of the lungs (called the pleura)
  • the spaces between the linings, called pleural spaces.

Because we now know chILD conditions are not always related to one area of the lungs (the interstitium), some experts like to include the term ‘diffuse lung diseases’ (DLD). This is because diffuse means ‘all over’ rather than one place.

But to keep things simple and clear in this information, we call them all chILD conditions.

How common are chILD conditions?

It’s difficult to know exactly how common chILD conditions are. This is because we are still learning more about these conditions.

Different specialists include different conditions under the chILD umbrella. Because of this, many cases of chILD are either misdiagnosed or not reported.

We do know that chILD conditions are rare. Some studies estimate some chILDs affect about one child in a 100,000, others around 150 children in a million.

What causes chILD?

Different types of chILD have different causes. We don’t yet know all the causes, but in over 70% of ILDs in children, an underlying cause can be found.

Some causes of chILD are:

  • how surfactant (a mixture of fat and proteins ) is produced when your child’s lungs are growing
  • a problem with the way your child’s tiny blood vessels, called capillaries, have developed
  • conditions that cause inflammation, such as connective tissue disease and rheumatological conditions (conditions affecting joints tendons, ligaments, bones, and muscles)
  • immune deficiency - children whose immune system has been weakened are more likely to get chILD.

Some conditions only affect children under two years of age, such as neuroendocrine cell hyperplasia of infancy (NEHI) and pulmonary interstitial glycogenosis (PIG).

What is surfactant?

Surfactant is a mixture of fats and proteins that help make sure your air sacs don’t collapse when you breathe out. It’s produced as babies’ lungs develop in the womb.

chILD-related surfactant conditions are usually caused by faulty genes in the production or movement of surfactant around the lungs. If your child has a surfactant-related chILD, ask for genetic support from your health care professional in understanding how to manage this condition.

Is there any way to prevent chILD?

It’s not possible to prevent chILD.

But there’s lots you can do to reduce the risks to your child’s lungs. Take a look at our pages on risks to your child’s lungs.

What’s the outlook for chILD?

If your child has chILD, the severity of their disease can vary. But it’s important to note that even children with the same condition may have different symptoms. Some cases of chILD are chronic (long-term) and may stay the same or slowly worsen over years. A few types of chILD conditions can get better over time.

Sadly, some cases of chILD can be very severe. In rare cases, some children may die from their condition, or will only survive after a lung transplant.

Once your child is diagnosed with chILD, a team of health care professionals will decide with you the best form of treatment to improve your child’s symptoms. They can give you personalised advice and care specific to your child. We have more information on the different treatments for chILD and living with chILD.

Next: Symptoms and diagnosis

Did you find this information useful?

We use your comments to improve our information. We cannot reply to comments left on this form. If you have health concerns or need clinical advice, call our helpline on 0300 222 5800 between 9am and 5pm on a weekday or email them.

Page last reviewed:
Next review due: