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 A 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 A guide to cystic fibrosis for family, whānau and friends
SKIP is a nationwide network of individuals, community groups, government agencies, workplaces and national non-government organisations, whose aim is for all children in New Zealand to be raised in a positive way, and parents and caregivers who feel confident about managing children’s behaviours as part of a loving, nurturing relationship.
Its website provides valuable resources for parenting children under age 5, including tips on topics such as not listening, throwing tantrums, being fussy about food and whining.
Many of the issues parents face when raising a child with CF are normal, everyday challenges all parents face. We encourage you to visit the SKIP website or download the SKIP Tips app for advice on behaviours most parents find challenging.
The Parenting resource website is designed for use by workers supporting families with young children, but it also offers tips for parents for different ages and stage.
The resources include parenting and child development information covering pregnancy through to three years of age.
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.