What is chILD?
Children’s Interstitial and Diffuse Lung Disease (chILD) is not just one disease. It is a group of rare lung problems found in babies, children, and teenagers. There are many types of chILD. Some cause mild symptoms and some cause more serious illness. All types of chILD make it harder for oxygen to get from the lungs to the rest of the body. It is important to find the diagnosis early so that treatment can be started. If you think your child may have chILD, talk to your doctor and think about a visit with a pediatric pulmonologist (lung doctor).
What does Interstitial mean?
When a person breathes, air passes through the airways into tiny air sacs called alveoli. These alveoli are where the oxygen we breathe passes into the blood. This is also where carbon dioxide (a waste gas from our cells) leaves the blood so we can breathe it out.
The area between the alveoli and the blood vessels is called the interstitium or interstitial space. If the interstitium gets damaged, it is harder to move oxygen into the body and carbon dioxide out.
Read more about normal lung development here.
What are the symptoms of chILD?
There are many types of chILD. Some children have mild symptoms. Other children could be very sick. Your child may have any of these:
- Fast breathing
- Deeper, harder breathing – they may use extra muscles to help them breathe. They may have retractions or flaring of the nostrils.
- Some babies can make a “grunting” noise
- Trouble growing or gaining weight
- Everyday cough, wheezing, or chest congestion
- Chest x-rays or lung scans that are not normal
- Low oxygen levels
- Infections of the lungs or airways
Children who have lived with lung problems over time can have:
- “Clubbing” of fingers or toes
- Changes in the shape of their chest
The information about chILD is limited to the number of research studies that have been done to date. However, there are a few things you can do:
- Keep checking our website. We’re working on getting as much information posted as possible. This non-profit group is made up of families affected by chILD and the doctors treating chILD. You can find disease specific information, descriptions of diagnostic testing, and tips for living with chILD.
- Ask your child’s doctor, but don’t be surprised if they don’t have much information to share. chILD is rare and not every doctor has had a chance to learn about it. Your doctor can contact the clinical research network for more information.
- Connect with other families through our family forums and on Facebook and Twitter.
For more information or support, please contact us at info@child-foundation.org
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