Receiving a diagnosis of cystic fibrosis for your baby has probably come as a shock to you and your family, and you may feel overwhelmed with how much there is to learn and the impact CF will on your child’s life.
You are not alone. You may have already met some of the multidisciplinary team who will care for your child, and as a parent you play a huge part of that team – as a partner and decision maker in deciding the best care for your child.
With time and practice you will develop the necessary skills to manage CF as part of everyday life.
It’s important to remember that CF affects everyone differently – some children remain well for a long time with minimal symptoms or hospital admissions, while others require more intensive medical care.
When your child is first diagnosed you will usually be seen by the medical team at weekly hospital appointments until you feel confident managing your child’s treatments at home. As you gain more confidence in caring for your child and the extra demands CF bring, and if your child is well, hospital appointments may be reduced to three monthly.
You will be referred to a CF field worker who will usually arrange to visit you at home within a few weeks of diagnosis. The field worker can support you as you adjust to caring for your child and provide you with relevant information, answer your questions and ensure you get the practical and emotional support you need.
We’ve worked with New Zealand parents with a child with CF to develop a resource for parents with a newly diagnosed child. Most of the information focuses on supporting you through your child’s first year following diagnosis as a newborn and throughout the guide, children and their parents share their stories about living with CF and tips for daily life.Download the Guide for Parents and Caregivers of Children Diagnosed with Cystic Fibrosis
Finding out your child has a severe illness like cystic fibrosis is a life-changing event, and one that comes with massive changes. Parents adjusting to a new diagnosis are under a huge amount of stress in addition to the usual stress of being a parent. Most need significant extra support to get through the difficult period of adjustment to the diagnosis and all that it entails.
We’ve worked with parents of children diagnosed with CF to develop a resource for friends and family who would like to know some practical and emotional ways to support someone they know with a child with CF.Download the Guide to CF for Family, Whānau and Friends
As your baby grows - from a newborn, to a toddler, to a pre-schooler and then on to school, the information and support you want, and need, will change.
Cystic Fibrosis New Zealand is here for you, no matter what stage of the journey you are on.