does anyone have a newborn that has this disease? or know what type of symptoms a newborn would have? l received a letter in the mail this morning saying that my daughter ''most likely'' is a carrier for CF. now it said that this is inherited, but would not my 3 year old son have it as well?im just confused because ive never heard anything about this before, and my baby is 2 months old. overall she is a healthy baby and (knock on wood) has not had any problems. when l called the number the lady l had spoke to said that there is a 50-50 chance that she might have it! so if anyone has any insight, it sure would help!!
well the genetic counsler called this am and said that my baby has one gene mutation, and thats theres nothing to worry about! im still going to go get tested and so is my boyfriend! thanks everyone

l had a student with cystic fibrosis.
It is a disease that affects the respiratory & digestive systems of about 70,000 children worldwide.
It caused by a defective gene, & the protein produced form a heavy mucus, which causes lung infections. This thick mucus does not break down without certain methods. (Which l will explain in a minute)
The thick mucus also prevents the pancreas from properly breaking down certain foods, so most children with CF cannot each foods with fats/sugars unless they have an enzyme first.
Symptoms include constant coughing, sometimes with phlegm, lung infections, wheezing, shortness of breath, smaller growth, and/or bulkier stools. From the school end, it can also affect a students ability to attend to instruction or have full energy to remain on task.
The good news is there r treatments, some of which can extend the life of an individual with CF by a few years. Children can take enzymes, & receive taps on the back, which aid in the breakdown of the mucus. Some children can wear a vest, which pulsates & aides in the break-up of mucus as well.
l recommend u check out the CFF website to seek further insight.
Best of luck, & u will be in my prayers.

Will give you an excellent site explaining CF but first,well it is inherited but does not mean your 3 yr old or other families may have it.

Hope this helps & best wishes!

http://intelihealth.com/IH/ihtIH/WSIHW000/9339/9772.html

Cystic fibrosis (CF) is a chronic, progressive, & frequently fatal genetic disease of the mucus glands. Approximately 30,000 Americans, 3,000 Canadians & 20,000 Europeans have CF, according to the Cystic Fibrosis Foundation. The disease primarily affects the respiratory & digestive systems of children & young adults; although the sweat glands & reproductive system r also usually involved. People with CF typically have a lifespan of about 30 years, some more than 30 years.
A number of medications can help affected individuals breathe better & prevent infections. Many come in a mist form that the child inhales into the lungs. The health care provider will recommend different medications depending on the person is symptoms & how severe they are. Types of medications include:

Mucus-thinners. Drugs such as Pulmozyme (Dnase) help thin the mucus so that the child can cough up it up more easily.
Bronchodilators. These medications help clear mucus & keep airways open. Examples r Albuterol, Proventil & Ventolin.
Antibiotics. These medications prevent & treat infections. An inhaled antibiotic called TOB l (tobramycin) is commonly used.
Anti-inflammatories. Medications, such as inhaled steroids & ibuprofen, help prevent lung inflammation (redness & swelling) that can make breathing difficult.

Cystic fibrosis occurs mostly in Caucasians whose ancestors came from northern Europe, although it affects all races & ethnic groups.
Babies born with CF genes usually have symptoms during their first year, but sometimes indicators of the disease do not show up until adolescence or even later. CF symptoms vary from child to child. Infants or young children should be tested for CF if they have persistent diarrhea; bulky, foul-smelling, greasy bowel movements; frequent wheezing or pneumonia; a chronic cough with thick mucus; salty-tasting skin or poor growth. CF should be suspected in babies born with an intestinal blockage called meconium ileus.
Children may inherit altered genes from one or both parents. To have CF, a child must inherit two abnormal genes – one from each parent.
The symptoms of CF vary & can range from mild to severe. Some common symptoms include:

Coughing or wheezing
Repeated lung infections, such as pneumonia & bronchitis
Shortness of breath
Poor growth, in spite of a big appetite
Intestinal blockage, called meconium ileus, in a newborn (caused by thickening of the greenish stool newborns usually pass in the first days of life)
Greasy, bulky stools
Infertility in affected males due to blockage or absence of the tube (vas deferens) that carries sperm out of the testicles

l have a 3 mo. old daughter who was diagnosed 6 wks old. It was picked up by the newborn screening (i have a 6 yr old that does not have cf) l knew when l was pregnant that l was a carrier but we were not aware her father was also. Up until we found out she had cf, we did notice that 2 wks old she was drinking 8 oz bottles & still wanting more. We soon understood that it was because her body was not absorbing any of her formula. She was pretty much starving. She is now on enzymes to help her body absorb it. She is doing great!! Her lungs r still healthy. We give her neb treatments 2x a day & the enzymes b4 every bottle (she takes 20 a day. we have to mix them w/ baby applesauce). l was terrified when l first found out but now l realize that they have come a long way with this disease & l hope sooo much that they will find a cure!

l am assuming ur state has newborn screening.
Cystic fibrosis has been well explained in the previous . You can also find information on it at cff.org.

It is inherited. You get the genes for it from ur mother & ur father. If u have two copies of the mutation, u will have cystic fibrosis & will show some signs of the disease (thick sticky mucus that is excreted from sweat glands, lungs, pancreas, liver, etc.). If u have one copy of the gene, u r considered a carrier. However, u do not show signs of the disease.
Your son may also be a carrier, & just has not been tested for it yet. The state l live in just got newborn screening a year ago. It is relatively easy to test for, if you're worried. The sweat chloride test takes about an hour & is not very invasive (no pokes, for instance).
If ur daughter is healthy, just follow up as they recommend & try not to worry.
l do not know why they said she has a 50-50 chance of having it, unless she was talking about being a carrier. Like l said, just follow up, & try not to worry :-)