Newly diagnosed

Newly diagnosed

Cystic Fibrosis (CF) is an inherited condition caused by a faulty gene. A person with CF has it from birth and for life. About 1 in 2,500 babies born in the UK has CF.

Newborn Screening Programme

Most children affected by CF in the United Kingdom are now diagnosed through the National Newborn Screening Programme.

This inherited condition can affect the digestion and lungs. Babies with CF may not gain weight well, and have frequent chest infections. Screening means that babies with CF can be treated early with a high energy diet, medicines and physiotherapy. Early treatment is thought to help children with CF live longer, healthier lives and prevent the early progression of their disease. If babies are not screened for CF and they do have the condition, they can be tested later but parents and children may have an anxious time before CF is recognised.

In the West Midlands when CF is suspected on the bloodspot sample taken by the midwife during babies first weeks of life parents are informed by the screening nurse specialists and are then seen the following day by the specialist CF team and treatment is started as required.

Useful Documents and Links

NHS Newborn Blood Spot Screening Programme
NHS Newborn Blood Spot Screening Programme

Guidelines, information, resources about the newborn screening programme for diseases like Cystic Fibrosis. Leaflets available: CF suspected, CF carrier and CF screening repeat bloods

Cystic Fibrosis TrustBaby clinic information leaflet
Cystic Fibrosis Trust

We are the UK's only national charity dealing with all aspects of Cystic Fibrosis. We fund research to improve Cystic Fibrosis care and treatment, and aim to ensure appropriate clinical care and support for people with Cystic Fibrosis.

Baby clinic information leaflet

Information about Cystic Fibrosis baby clinic at Birmingham Children's Hospital

Medicines for Children

This website contains information about some medicines with leaflets prepared by the Royal College of Paediatrics and child health (RCPCH) and Neonatal and Paediatric Pharmacists Group (NPPG). These leaflets are designed with children in mind to provide answers to common questions that parents and young people may have about their medicines. There are also videos available on how to administer medicines including liquids, eye drops and nasal sprays.