Dealing with a diagnosis of chILD
Fact sheet
This Dealing with a Diagnosis of chILD fact sheet provides information and tips on how to navigate a diagnosis of childhood Interstitial Lung Disease (chILD).
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A chILD diagnosis can have an enormous impact on you, your child and your family.
Things you may be feeling
You will experience many emotions when a diagnosis of chILD is made. Understandably, feelings of sadness, fear, guilt, anger and confusion are common.
- Grief
It is completely normal for parents and carers to feel grief, and even intense sadness, when their child is diagnosed with chILD, hospitalised or told that they need surgery. Grief is often strongest in times of crisis but can pop up – sometimes unexpectedly – at other times during a child’s life as well. - Fear
Having a child with chILD often leads to being fearful. It’s all too easy to fill your head with frightening ‘what if…?’ scenarios. Fear can rear its head in a variety of situations. One of the biggest fears of parents and carers is that their child will not survive. Other fears include that their child will be exposed to germs and illnesses, or stigmatised and socially isolated. - Guilt
Many parents (and grandparents), especially mothers, feel like they did something wrong to cause their child’s condition. These feelings of guilt are real, and you should acknowledge them, but then let them go. There are factors that make it more likely for you to have a child with chILD, but that doesn’t mean you caused your child’s condition or that you should feel guilty. - Anger
Anger is a completely normal reaction. You might feel like it isn’t fair and wonder why it has happened to you. You might feel resentment toward others who have healthy children, especially if it seems like they don’t appreciate how fortunate they are. Most parents and carers experience feelings of anger at some point, and those feelings do not make you a bad person. - Confusion
Feelings of confusion are normal. You may be confused after receiving large amounts of medical information that you didn’t fully understand. You might have turned to the internet to learn more, adding to your confusion and fear. Other parents of children with chILD might provide you with additional advice, which could be helpful, but could also add to your confusion because each person’s experience is different. - Frustration
Many parents will experience frustration. You may be frustrated that there is no diagnosis for your child and there aren’t any answers, frustrated that medical staff have little knowledge on rare lung diseases, or frustrated that you aren’t being heard by your child’s treating healthcare team.
Information and Support Centre
Our Information and Support Centre team provides guidance, information and support, and connects you to relevant support services. This free and confidential service is available Monday to Friday 8am – 4.30pm (AEST) (excl. public holidays). Please note this service does not offer medical or treatment advice. Freecall 1800 654 301 or email us below.
Taking care of yourself
As parents and caregivers of children with chILD, you must take care of yourself so that you can effectively care for your child. You will be faced with making important choices about your child’s care, and you may not make the best decisions if you’re too tired, physically unwell or overwhelmed with very high levels of stress or anxiety. That’s why it’s vital for you to take care of yourself.
- Ask for and accept help
Acknowledging and accepting that you need help can be difficult. Remember, your family and friends want to help you and support you during this stressful time, so allow them to do so. They may not be sure when or how to help. It is okay to reach out and ask for help. Make a list of things that need to be done to keep your life running and be realistic about what you have the time and energy to accomplish. Keep the list handy, and when things feel like they might be starting to get on top of you, talk to a family member or friend about how they can help and pick something from the list. - Give yourself a break
You do not need to have all the answers or be with your child every second of every day. We know it’s scary to leave your child’s side, particularly after surgery or when they are in the hospital, but you do really need to get away — even for just a little while. For your own mental health, it is essential to schedule time away from the responsibilities of parenting and caregiving. Make plans for a friend, family member or healthcare provider to spend time with your child while you read a book, go shopping, dine out, nap… anything that is truly relaxing. - Connect with your healthcare team, support network and other families
Being the parent or carer of a child with medical needs can be an isolating experience. It is important that you reach out and connect with others who can help you feel less alone during the journey. Ask your healthcare team or social worker to refer you to community support groups or put you in touch with another family that has experienced a similar situation. Connecting with other parents or carers can help ease the fear. Use the internet to keep distant family and friends updated on your child’s condition and care. Take advantage of your hospital’s support services such as social workers, pastoral care or patient advocates. - Take care of your own health
When you are caring for your child, it’s easy for your health to become secondary. But if you aren’t healthy, it will be more difficult to meet your child’s needs. Regular exercise is important for both your physical and emotional wellbeing. It is important that you eat nutritious foods and drink plenty of water during your child’s hospitalisation to ensure you stay hydrated. Keeping up with your favourite hobbies or developing new ones is a good way to take a mental vacation. Knitting, reading, drawing and blogging are easy ways to busy your hands and quiet your mind.
Helpful Links
Medical Information
- ChILD Lung Foundation United Kingdom
- ChILD Lung Foundation United States of America
- European Management Platform for Childhood Interstitial Lung Disease
- Kids Lung Register: International register and biobank for rare lung diseases
- Genetic and Rare disease network
- Genomic information for you and your family
Social Support
Financial Assistance
Other
Printable resources
Young Lungs Facebook Group
The Young Lungs Facebook Group is a place for parents of children affected by a rare lung disease to connect. It’s a place to inspire hope and expand awareness about rare lung diseases in children and the challenges children and families face.