Talking about CF
There has been a great deal for you to take on board since your baby was diagnosed with cystic fibrosis. 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 this one where they can learn more.
Telling your 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 at first, 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. This means that being secretive is not usually a good idea. Encourage them to ask questions, keeping the answers simple and age appropriate.
Understanding family reactions
Your family members may well be experiencing the same feelings as you, but without being told much about your baby’s condition. When you feel up to it, explain that CF is an inherited condition 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 CF 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.
Carrier screening for the CF gene change is available in Australia and is as simple as having a blood test or a saliva swab. Other family members can choose to be tested so they are aware of their CF carrier status if they are planning to have children.
Dealing with ignorance
If friends and colleagues do not 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 sympathy.
Sometimes it’s great just to talk with someone who knows what you are going through. CF Community Care can connect our members with others from the CF community who share similar experiences. Contact our office on (03) 9686 1811 or email firstname.lastname@example.org if you would like a confidential one-one-one chat.