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Cystic Fibrosis - Newborn Screening

1 in every 2,500 babies born in the UK has Cystic Fibrosis (CF). In England about 240 babies are born with CF every year. Cystic Fibrosis is caused by a defective gene which results in the internal organs, especially the lungs and digestive system, becoming clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. Babies with CF may not gain weight well, and have frequent chest infections.

The Cystic Fibrosis Trust campaigned for all newborn babies in the UK to be tested for Cystic Fibrosis. Screening means that babies with CF can be treated early with a high-energy diet, medicines and physiotherapy. Although a child with CF may still become ill, early treatment is thought to help them live longer, healthier lives.

If babies are not screened for CF and they do have the condition, they can be tested later but parents may have an anxious time before CF is recognised and the child may have suffered irreversible lung damage.

The Government announced in 2001 that it would be introducing newborn screening for all babies born in England, to be carried out within the first week of life. In August 2004 the UK Newborn Screening Programme Centre was asked to lead the rollout of the CF Screening Programme. Under the management of Dr Barbara Judge, the programme extended newborn screening for CF to all babies born in England. The last region in England came on board in October 2007. Scotland, Wales and Northern Ireland were already screening for CF at birth.

Biochemical screening for CF using a method to detect raised levels of immuno-reactive trypsinogen (IRT) in the blood has been in use in some parts of the UK since 1980. The IRT test is performed on the newborn blood spot card which is tested for a number of different conditions. A drop of blood is taken from the heel of the baby by the midwife and collected onto the blood spot card. Most babies will get a clean bill of health but for those few found to have CF, they will gain from getting the proper treatment straightaway and serious lung damage may be avoided or delayed. The aim is therefore to perform the screening test so that treatment can start when the baby is 4-5 weeks old.

We are pleased that from October 2007 all babies in England will be tested to see whether they have Cystic Fibrosis, which should significantly improve the chance of those with CF to lead a longer and better quality of life.

• The Cystic Fibrosis Trust is the UK's only national charity dealing with all aspects of Cystic Fibrosis (CF). It funds research to treat and cure CF and aims to ensure appropriate clinical care and support for people with Cystic Fibrosis.
• Cystic Fibrosis (CF) is the UK's most common life-threatening inherited disease. Cystic Fibrosis is caused by a single defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.
• Each week five babies are born with Cystic Fibrosis and three young people die - 90% from lung damage. Average life expectancy is just 31, although improvements in treatments mean a baby born today is expected to live longer.

To find out more about Cystic Fibrosis and the Cystic Fibrosis Trust visit www.cftrust.co.uk. Help and advice for those affected by Cystic Fibrosis is available through their Helpline on 0845 859 1000.

NOTE:
The health section of Parenting.co.uk is not to be used as a substitute for your GP; if your child is ill then seek the advice of a qualified doctor or other health professional without delay.

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