What are the signs and symptoms of chILD?

Find out about the different symptoms of children’s interstitial lung disease (chILD), signs to look out for, and how chILD is diagnosed.

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How does chILD affect my child’s lungs?

ChILD makes it harder for lungs to expand to get oxygen into the blood, and for carbon dioxide to be breathed out. It means children with chILD will get short of breath or breathe faster.

The signs and symptoms to look out for

Symptoms of chILD in young children are not very specific - they could be caused by other things, too. For example, the symptoms of chILD conditions could also be symptoms of conditions like cystic fibrosis or primary ciliary dyskinesia (PCD). This can make chILD conditions hard to diagnose.

Different types of chILD can have some of the same symptoms – but they can be more severe in some types than others.

However, doctors will consider doing tests to confirm or rule out chILD if your child has three or more of the following:

  • breathing symptoms, such as
    1. cough
    2. wheeze
    3. difficulty breathing
    4. becoming unusually breathless after exercise, also called exercise intolerance
  • respiratory signs, such as
    1. fast breathing
    2. abnormal sounds heard in the lungs and airways
    3. sunken ribs when breathing
    4. swelling at the ends of the fingers and nails (clubbing)
    5. not growing or putting on enough weight, also called failure to thrive
    6. respiratory failure. This is when the lungs are not able to do their job. They stop being able to transfer oxygen into the blood, or carbon dioxide from the blood to be breathed out
  • a low level of oxygen in the blood
  • abnormalities appearing throughout both lungs as shown on a chest X-ray or CT scan.

There may be signs of disease in other parts of the body, including the skin and joints.

The chILD Lung Foundation website has more information on some of the symptoms for specific conditions.

How is chILD diagnosed?

Diagnosing chILD can be difficult. Your child may need to have different tests to rule out other conditions as well as tests to diagnose chILD. If your doctor thinks that your child has chILD they will refer them for more tests to diagnose chILD and work out the best way to treat it.

Your doctor may:

  • listen to your child’s chest
  • ask about where you live and your home environment
  • ask you about the medical history of your child and your family. In particular, they will want to know about any family history of lung diseases starting in early childhood.

Make sure you get the most out of your doctor’s appointment.

Your child may have the following tests and investigations. These can diagnose chILD and assess how severe it is.


Your child will need a HRCT (high-resolution computed tomography) scan which may allow a specific diagnosis to be made. Often it’s not very specific and further tests are needed. Some children may need a lung biopsy.

Blood tests

Blood tests may mean that a diagnosis can be made without any invasive testing such as a biopsy. These include tests for genetic and environmental causes of chILD. Other tests may be performed on an individual basis. They are also used to rule out other possible conditions.

Measuring oxygen levels in your child’s blood

This test, called pulse oximetry, involves having a small light sensor taped, usually, to a fingertip or toe. It won’t be painful for your child.

A breathing test

Breathing tests may be used to see how your child’s lungs work.

Babies and young children may be given an infant pulmonary function test (or infant PFT) – a safe and painless way of measuring how babies and toddlers breathe. The test is carried out while your baby sleeps: a small mask is placed over their nose and mouth to monitor their breathing patterns.

Older children may be given a lung volume test. Children aged six can usually manage this successfully, and some can do it before they are six. Your child will be asked to breathe out into a mouthpiece and then breathe in. The machine measures the amount of air your child’s lungs can hold.

Other breathing tests your child may have include spirometry and gas transfer (or TLco) test.

Looking inside your child’s lungs

If other tests have not helped the doctor make a diagnosis, they may want to look inside your child’s lungs and possibly remove some cells or tissue for testing.

  • Lung biopsy. A surgeon makes a small cut in your child’s chest and removes some tissue from the lung under general anaesthetic, so your child won’t feel anything. This can sometimes be done using keyhole surgery.
  • Bronchoscopy. A narrow, flexible tube with a camera on the end is used to look inside your child’s lungs. This is usually only performed at the same time of a lung biopsy.

Genetic testing and chILD

The number of genes we know about that cause different types of chILD is increasing. Genetic testing is available for some chILD conditions.

A blood test can identify these genes, and if it does, there may be no need for a lung biopsy. As well as being less intrusive, genetic testing gives a clearer, more targeted result than a biopsy, and there may be highly specific treatments available.

Sometimes, very premature babies might be diagnosed with bronchopulmonary dysplasia (BPD), but their symptoms may be more severe than a specialist would expect. If this happens, they may have a chILD condition as well, but this is rare.

Next: Treating chILD

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