Cystic Fibrosis

What is Cystic Fibrosis?

Cystic Fibrosis (CF) is a life-long illness that is usually diagnosed in the first few years of life. The disorder causes problems with digestion and breathing. Cystic fibrosis does not affect intelligence or appearance.

What are the health needs for children with cystic fibrosis?

The digestive problems can usually be treated by taking medicine daily. To treat lung problems most children with CF need to have respiratory therapy for about half an hour every day; this helps clear mucus from the lungs. This is something that parents or other family members can do at home. Sometimes lung infections still develop. The child may need to be treated with antibiotics at home or in a hospital. However, the infections tend to become worse over time and more difficult to treat. Treatments are costly and may be burdensome without adequate health insurance coverage.

Do all people with cystic fibrosis have the same symptoms?

No. Some individuals have milder or more severe symptoms than others for reasons that are not completely understood. It is not always possible to tell from a prenatal test how mild or severe a child’s symptoms will be. While in general people with CF have shortened life span, some die in childhood, and others live into their 40’s or even longer. Although there is no cure for CF, research on more effective treatments is under way. Still, by adulthood, most people with CF will have some breathing and digestive problems. Despite these physical problems, there are many people with CF who attend school, have careers and have fulfilling lives.

What is the purpose of cystic fibrosis carrier testing?

The purpose of CF carrier testing is to see if a couple is at increased risk for giving birth to a child who will have CF. Cystic fibrosis carrier testing is a laboratory test done on a sample of blood or saliva. If testing shows that a couple is at high risk, additional testing can be done on the developing baby to see whether or not it will have CF. However, most women’s test results are normal.

Cystic fibrosis cannot be treated before birth. The purpose of having this information about your developing baby is to prepare yourself to care for a child with special heath care needs.

Cystic Fibrosis Screening

Effective as of 2002, we are required to offer Cystic fibrosis testing to all obstetrical patients. This is an elective procedure and may or may not be covered by your insurance. Please read the following information on Cystic Fibrosis.

Cystic fibrosis (CF) is one of the most common inherited genetic conditions in the Caucasian population, although it also affects other ethnic populations. It is estimated that 1 in 2,500 to 1 in 3,000 Caucasian children are born with CF. The symptoms of CF can vary greatly, although the majority of affected individuals have problems with pulmonary obstruction, chronic lung infection, pancreatic insufficiency and failure to thrive. CF is an autosomol recessive genetic condition, which means that both parents must be CF carriers in order to be at risk to have a child with CF. The American College of Obstetrics & Gynecology has recommended that all prenatal patients be offered CF carrier screening. DNA testing for CF detects approximately 80-90% of Caucasian carriers, approximately 60% of African-American and Hispanic carriers, and approximately 30-50% of Asian carriers.

You may request that CF carrier screening be done and acknowledge that you will be responsible for all costs or you may decline CF screening.