New Diagnosis
Receiving a diagnosis of Cystic Fibrosis can be a worrying time, whether you’ve just had a baby, or you are an adult experiencing a late diagnosis. We hope the information below is helpful. if you need free and confidential support after a diagnosis, please contact us.
Learning your child has Cystic Fibrosis
Some babies with CF can develop bowel blockages within a few days of being born; sometimes within hours of birth. They will need hospital treatment for this.
Not all that long ago, children with CF who did not have bowel blockages as newborns were not usually diagnosed until problems such as poor growth or recurrent chest infections had developed. Nowadays treatment can start earlier as Cystic Fibrosis is one of the conditions screened for in the UK as part of the heel-prick blood spot that all babies in Scotland are offered on day 4 or 5 of life. The heel-prick test does not make the diagnosis of CF, but if the test is positive it flags up that CF is a possibility that needs to be further investigated. This can be a complex area. Your CF team will be able to explain to you what further tests are recommended for your baby and will explain to you what the results mean.
This can be a worrying and stressful time for parents and families. Your CF team will support you and your family; but sometimes talking to someone who is neither a family member nor a CF professional, yet has experience in CF, can be helpful. The Butterfly Trust offers a comprehensive support service, including emotional support. All our services are free and completely confidential. Please contact us.
Not all that long ago, children with CF who did not have bowel blockages as newborns were not usually diagnosed until problems such as poor growth or recurrent chest infections had developed. Nowadays treatment can start earlier as Cystic Fibrosis is one of the conditions screened for in the UK as part of the heel-prick blood spot that all babies in Scotland are offered on day 4 or 5 of life. The heel-prick test does not make the diagnosis of CF, but if the test is positive it flags up that CF is a possibility that needs to be further investigated. This can be a complex area. Your CF team will be able to explain to you what further tests are recommended for your baby and will explain to you what the results mean.
This can be a worrying and stressful time for parents and families. Your CF team will support you and your family; but sometimes talking to someone who is neither a family member nor a CF professional, yet has experience in CF, can be helpful. The Butterfly Trust offers a comprehensive support service, including emotional support. All our services are free and completely confidential. Please contact us.
The early days after diagnosis
Your CF team will help you determine the treatments that are best for your baby and will help you learn how best to give them. Specialist CF doctors and nurses will see you and your baby regularly and will advise on the most appropriate medications and treatments that may be needed at different times. A specialist physiotherapist will show you how to help your baby clear secretions from their chest. Chest physiotherapy is not painful and many babies seem to positively enjoy it! A specialist dietitian will work with you in deciding how much pancreatic enzyme supplement is needed in different situations and will help you in devising the most appropriate feeding plan. You will be able to contact members of the CF team directly (usually the CF nurse specialist is the first point of contact) if you have specific concerns.
As your child grows up
As your child progresses through nursery, primary and then senior school and beyond, there will be changes in treatments and how they are given. Just as in most areas of life is normal and indeed healthy for children with CF to eat to exert more control and to start to make their own decisions as they grow up. As parents you will naturally guide them through this, but your CF Team and the Butterfly Trust should also be able to help with advice on CF related issues in teenagers and young adults.
Your Cystic Fibrosis Team
You will have a specialist team in place that will work hard to support you and your family to ensure that you child receives the best possible care. This team will include the following:
- Doctor
- Nurse
- Physiotherapist
- Dietitian
- Clinical Physiologist
- Respiratory Physiologist
- Pharmacist
- Secretary
- Lab staff
- Other specialists consulted if needed
**The information on this page was written by Dr Andrew Fall with contributions from the Butterfly Trust. It is not intended to be either detailed or comprehensive and can never replace discussions with experts in the condition. There are many aspects of the condition not covered here. To learn more, please ask your CF team for further information.