What should I tell people?
You’ve been taking a lot on board since your baby was diagnosed with cystic fibrosis, with a lot of information and emotions to deal with as well as getting to know this new little person in your life.
You might not feel ready to answer a lot of questions from family and friends just yet, so ask them for their patience.
Choose who you feel most comfortable confiding in, work out ways to explain CF in your own words and only go into as much detail as you want to share. You can also refer people to websites such as Cystic Fibrosis Community Care (http://www.cfcc.org.au) or Cystic Fibrosis Trust UK (https://www.cysticfibrosis.org.uk) where they can learn more.
Telling the kids
What you tell your other children depends largely on their ages and capacity to understand. You are the best judge of this, but it’s a good idea to keep the information as simple as possible initially and then build on their knowledge when they see you giving your baby special attention.
The siblings will be involved in, and affected by, having a baby with CF in the family, so being secretive is not usually a good idea. Encourage them to ask questions, keeping the answers simple and age appropriate.
Being secretive is not usually a good idea
Understanding family reactions
Your family members may well be experiencing the same feelings as you, but without being told much about your baby’s illness. When you feel up to it, explain that CF is an inherited illness and that you and your partner are both carriers of the gene change that causes CF.
Make sure they understand that no one is to blame. But be aware that some family members might think that inheriting such an illness brings with it a certain ‘stigma’ and they might have problems accepting the facts.
Even grandparents, as sad and worried as they might be, can find it difficult to believe the diagnosis and to accept that their side of the family was at all ‘responsible’. You might like to invite them or other family members to attend a clinic appointment with you.
Your own siblings and cousins might have different concerns, worrying that they might also be CF carriers.
Screening is vital
CF carrier screening is available in Australia and is as simple as having a blood test or a saliva swab. If you are tested and found to be a carrier, it is important that you share this information with other family members so they are aware of the risks of being a CF gene change carrier to any yet to be born children.
Dealing with ignorance
If friends and colleagues don’t know about or understand CF, be prepared for remarks that can be unintentionally hurtful. Comments such as, ‘She hasn’t put on much weight’ or ‘That poor little boy should be home in bed with a cough like that”.
Brush off such comments, if you can. Many people don’t know anything about CF, so try to be ready with basic answers to their questions. They’re more than likely to respond with compassion and, often, too much sympathy.
Click on Getting Support if you, your partner or anyone else in your family is experiencing anxiety, depression or any other mental health issue. You’ll find a list of helpful resources.
