How Do You Know if Your Baby Was Born with Cystic Fibrosis

Susie McGee
brown eyed baby

How do you know if your baby was born with cystic fibrosis? Will your doctor tell you the diagnosis as soon as your newborn enters the world, or will you have to wait and watch for signs before you know for sure? What do you need to know about this disease?

What Is Cystic Fibrosis?

Cystic fibrosis, commonly referred to as CF, is a disease that affects the lungs and can cause nutritional deficiencies as well. This genetic disorder affects the body's production of mucus, which builds up in the lungs and the intestinal tract. This thick buildup can cause respiratory and digestion problems. Those who are afflicted by this disorder continuously battle respiratory infections, nutritional deficiencies, and possible lung failure.

Before you begin to worry incessantly over the possibility of your baby being born with a health issue like cystic fibrosis, it's important to remember that this disease is not common. In fact, only approximately one in 3,500 newborns are diagnosed with CF each year. However, it is a very serious disease. Those diagnosed with CF typically do not live past their 30s.

Causes of Cystic Fibrosis

Before you can answer the question, "How do you know if your baby was born with cystic fibrosis?", you need to understand the causes of this disease. Because it is a hereditary birth defect that is passed on from parent to child, if your baby is diagnosed, he or she got the gene from you or your partner. The diagnosis of CF in a baby often comes as a complete surprise because the carrier parent typically has no clue or exhibits no symptoms of the disease.

What are the chances that your child will have CF? With more than 10 million possible carriers of the disease, the risks seem quite large. However, even if you and your partner have the CF gene, the chances of your child having cystic fibrosis is only about 25 percent, but he or she will have a 50% chance of becoming a gene carrier.

Knowing if Your Baby Was Born with Cystic Fibrosis

How do you know if your baby was born with cystic fibrosis? In some cases, CF isn't diagnosed in a child until he or she is older. Common cystic fibrosis symptoms include the following:

  • Lack of meconium-This is the greenish-black stool that newborns pass during the first few days after they are born.
  • Greasy stools-The texture of your newborn's stool may be an indication of a problem.
  • Respiratory infections-A diagnosis of a respiratory illness doesn't automatically indicate that your baby has cystic fibrosis, but this condition along with other symptoms may indicate a need for more tests.
  • Intestinal blockage-Newborns typically have numerous bowel movements throughout the day, especially breastfed babies. However, just because your newborn hasn't had a bowel movement as often as you think he should doesn't always indicate that he has cystic fibrosis. Still, if intestinal blockage occurs, your pediatrician may want to run more tests.

How Do You Know If Your Baby Is At Risk?

Because carriers of CF often aren't aware that they are carriers, they don't know if their baby is at risk. Obviously, a family history of CF would indicate that testing is in order, but did you know that babies of Northern European descent are at risk as well?

What can you do if you are concerned that your baby might be at risk for cystic fibrosis? A screening test will indicate if you and your partner are carriers of this disease. The test is done using either saliva or blood and is typically offered to all expectant couples. If either one of you is found to be a carrier, a test may be done on your baby in utero before he or she is born, often through an amniocentesis or chorionic villi sampling.

Once your baby is around two months old, a common sweat test may be conducted in which a sweat-producing chemical is applied to your baby's arm or leg, and electrodes are applied to produce sweat. A test for sodium levels of the sweat is then conducted.

If your baby does test positive for cystic fibrosis, treatments can begin soon after he or she is born. For more information, visit the Cystic Fibrosis Foundation website.

How Do You Know if Your Baby Was Born with Cystic Fibrosis