Key points about interstitial lung disease
- children’s interstitial lung diseases are also called ‘ChILD’
- ChILD is a name for a variety of rare lung conditions
- ChILD can happen at any age, from birth to the teenage years
- some tamariki with interstitial lung disease can be very unwell, while others have only mild symptoms
What is interstitial lung disease?
Children’s interstitial lung disease causes severe ongoing inflammation in the lungs. The inflammation happens in the tiny air sacs (called alveoli) and small airways (bronchioles) in the lungs. The air sacs and small airways help the body take in oxygen and get rid of carbon dioxide. When inflammation or scarring affects these air sacs, the lungs find it harder to do their job. The inflammation can cause long-term damage and make breathing more difficult.
Children’s interstitial lung disease is sometimes called ChILD.
ChILD is very rare. Only a very small number of tamariki get this each year in New Zealand.
This illustration shows how interstitial lung disease affects the lungs. It compares healthy air sacs (alveoli) with scarred and inflamed alveoli.
Source: KidsHealth
transcribeTranscript
The illustration shows a child with short dark hair standing with their hands on their hips. The lungs inside the chest are visible.
Two close-up circles zoom in to show the smallest air sacs in the lungs, called alveoli.
- The top close-up circle shows healthy alveoli, labelled 'Normal – Healthy alveoli'.
- The bottom close-up circle shows alveoli affected by interstitial lung disease. They look thickened and scarred and are labelled:
'Interstitial lung disease – Inflammation and scarring in the tiny air sacs (alveoli) and small airways of the lungs'.
Text on the illustration also says 'Looking at the smallest airways inside the lungs'.
At the top right is the KidsHealth logo with the website: kidshealth.org.nz
Types of interstitial lung disease in children
There are 2 types of ChILD:
Preschool type
This develops in pēpi (babies) and young tamariki, usually before they are 2 years old. Some pēpi are very sick right from birth. For others, symptoms can take months or even years to show.
School-age type
This can be a slow version of the preschool type, or can be the type that adults more often get. It may happen because of other health issues.
Causes of interstitial lung disease
There are a few different things that can cause ChILD. Causes include:
- genetic problems (something a child is born with)
- infections before or after birth
- immune system problems
- arthritis-like conditions
- breathing in things like mould or vaping chemicals over a long time
Your doctor might not know what caused your child's interstitial lung disease, even after doing tests.
Signs and symptoms of interstitial lung disease
Symptoms of ChILD vary depending on what has caused it and how old a child is.
Tamariki with ChILD may:
- have a dry cough that doesn’t go away
- have shortness of breath - even when resting
- become very unwell with chest infections
- get tired quickly while playing or exercising
- have poor growth or feeding problems in pēpi
- have changes to the shape of their nails - called ‘clubbing’
Diagnosing interstitial lung disease
Interstitial lung disease can be hard to diagnose, especially in tamariki. The doctor will examine your child and ask you about their symptoms.
If your child’s doctor thinks they might have ChILD, they will arrange a scan of your child's chest. This could be a chest x-ray or a CT scan. A CT scan can give a detailed picture of your child’s lungs and can show any damage to the airways.
The doctor may also arrange the following for your child:
- blood tests to check for gene problems or other medical conditions
- lung function tests
- a bronchoscopy
Rarely, tamariki may also need a lung biopsy.
Flexible Bronchoscopy In Children
Managing interstitial lung disease
There are many different types of interstitial lung disease. The aim of treatment is to relieve symptoms. It can be hard to predict how long your child will need treatment for or how they will respond. Some types of lung disease are very hard to treat. Your child’s healthcare team will talk to you about treatment options.
Medicines
Medicines such as steroids can be helpful for some tamariki with ChILD, but may not be suitable for others. The cause of the lung disease will help doctors choose which medicines might help.
Many of the medicines can cause side effects. Careful use can help reduce these. Your doctor will talk with you about possible medicines that may help. They will let you know what side effects to watch for. The doctors will monitor how your child responds.
Remove irritants
Irritants in the air can make a child's symptoms worse. This includes mould, smoke and liquids used in vapes and vaporisers. Removing these can help your child’s breathing.
Oxygen therapy
Some tamariki may need oxygen therapy to help improve their symptoms.
What can happen over time
Some tamariki will improve or grow out of their ChILD as they get older. Others may have ongoing problems. It depends on the cause of the problem, the amount of inflammation in their lungs and how well the treatment works for them.
Some tamariki may develop permanent scarring in their lungs. This scarring may worsen breathing troubles and lung infections. Long-term scarring can sometimes lead to a condition called bronchiectasis. Bronchiectasis can lead to ongoing lung infections.
Some tamariki may need long-term oxygen therapy. This could be at night or during the day and night.
Tamariki with severe ChILD may need higher doses of medicines like steroids. They may also need longer courses of treatment. This could increase the chance of them having side effects from the medicines.
Rarely, doctors may consider a child for a lung transplant if they have severe ChILD. Not all tamariki are suitable for a lung transplant.
Keeping your child with interstitial lung disease well
There are several ways parents and whānau (families) can support their child with ChILD.
Smoke-free and vape-free environment
Keep your child’s environment smoke-free and vape-free. If you want to give up smoking or vaping, contact Quitline or talk with your health professional or whānau.
If you want to give up smoking or vaping, call Quitline free on 0800 778 778. Quitline can provide free support and advice to help you or someone in your whānau quit smoking or vaping. Visit their website for more information.
Vaccinations
Keep your child’s routine vaccinations up to date. Your child should also get the flu vaccine every year.
Healthy balanced diet
Giving your child a healthy, balanced diet helps them to stay well. If your child is not growing well, they may need extra nutritional support. The team of health professionals who are looking after your child can arrange this.
Keeping your home warm and dry
Keeping your home warm and dry over winter helps keep your whānau healthy.
Reach out for support
Having a child with a rare condition can feel overwhelming at times. It’s okay to ask for help. Your health team is here to support both you and your child. There are support groups and services for parents and whānau of a child with a rare condition.
More information
The following websites are based in the USA and Europe. Please note that not all the information will be relevant to New Zealand or your child. Talk with your child’s doctor if you have any questions.
The chILD Foundation is a non-profit organisation whose mission is to provide compassionate support, education, and hope to children and families affected by Children’s Interstitial Lung Disease (chILD). Check out their website for more information and helpful resources.
See more information for parents, caregivers and family members of children with interstitial lung disease (ChILD) from the European Lung Foundation (ELF). ELF is a patient-led organisation that works to improve lung health and advance diagnosis, treatment and care.
Acknowledgements
Illustration by Dr Greta File. Property of KidsHealth.
