Dealing with the news that your baby has cystic fibrosis can be difficult. But it’s important to know that your journey with CF is not one that you have to travel alone.
Your child’s CF hospital clinic team will provide the best medical care available, while social workers and psychologists also help look after parents’ wellbeing.
Cystic Fibrosis Community Care provides support services and advocacy to the CF community. We help parents of newly-diagnosed children by providing programs, funding, advice and referrals to help you adapt to life as a CF family. We’re also here just to chat and to listen. Please contact our offices in Melbourne on (03) 9686 1811 or Sydney on (02) 8732 5700 to talk confidentially with a member of our support team.
Emotions after diagnosis
When you receive your child’s diagnosis you’re generally still recovering after the birth, plus dealing with sleep deprivation, a change in routines and, for mothers, a change in hormones and emotions.
Like many families, you might feel shock, disbelief, anger and, occasionally, relief (particularly if you felt that something was ‘wrong’ with your child, but didn’t know what). All this makes it difficult to concentrate and can make you feel overwhelmed by all the information the CF team gives you.
Each family responds to diagnosis differently. Although you may well have a very happy baby, you still might feel a sense of loss. This grief can be a significant part of adapting to the diagnosis, and can include:
- Loss of the healthy baby you imagined
- Loss of an imagined future/having grandchildren
- Loss of your career or a change in status
- Loss of time for yourself
This sense of grief can affect you emotionally and physically. As well as the common feelings of loss, you may also feel a sense of guilt and confused emotions because of the hereditary nature of cystic fibrosis.