Children With Cystic Fibrosis

Children With Cystic Fibrosis

Parents who have children have tough times and it can be heartbreaking. Parents often feel guilt because they blame themselves because they passed the mutant gene on to their child. Fear may also be an emotion that a parent will have when their children are diagnosed with a potentially fatal disease. It is normal for parents to feel these emotions and if they are having difficulty coping with the emotions, look for a support group in your area or search for an on-line Internet support group.

You might be one of the twelve million Americans who are unaware they are carrying the mutant gene for cystic fibrosis. Infants are often diagnosed when they are first born because not pass the substance that all normal babies pass within the first few days of birth. Some infants may experience diarrhea and foul-smelling bowel movements. The feces may look greasy and the child may have chronic pain that cause them to cry. Their stomachs may become bloated and they may produce excess gas.

Other babies may not show any signs of the disease for several months. The baby may be eating healthy, have a good appetite and seem to be healthy…except they are not growing. This “failure to thrive” is a sign a visit to the doctor may be called for. Another sign of the presence of the mutant gene is excessive salty taste on the skin. Kissing the baby and having it taste like salt is one of the primary symptoms of cystic fibrosis.

One of the hardest things a parent has to do for their child with cystic fibrosis is physiotherapy. Loosening the mucus so it can be expelled. This is uncomfortable for the child and hard for the parent. Cupping your hand and smacking your child’s chest and back for half an hour each day is not fun but it is necessary.

Fighting infections and keeping your child as healthy as possible is your priority. The cystic fibrosis gene does not affect the immunity system but the children have a harder time fighting off the infections that normal children get. The mucus that coats the linings of the organs and keeps the body lubricated is too thick to pass through the system. It collects in the air passageways that cause infection to flourish.

The best choice for your child is to help them be as normal as possible. They should be encouraged to take part in sports and social events. Encouraging them to get physical exercise and stay active will give them a better quality of life and help keep the thick mucus loosened up so it can be coughed up. A parent’s natural instinct is to protect their child and that is fine. Being overprotective will do them more harm than good. Allow them to grow, be independent, learn to make decisions, and be normal. Many cystic fibrosis patients are now living well past infancy and are marrying and raising children of their own.

Cystic Fibrosis Books & Resources

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