You spent your entire pregnancy dreaming of who the baby inside of you would grow to be. Whom will she look like? What should we name her? What color do we paint the nursery? And then the news comes that your child has cystic fibrosis. In your fear and sadness, you are completely overwhelmed with what to do next. The most important things to do involve getting your child’s health on track.
1 Make an appointment at the closest accredited cystic fibrosis clinic. It is extremely important that your child be taken care of by a staff of doctors, nurses, respiratory therapists, nutritionists, and social workers who are experts when it comes to cystic fibrosis. Most pediatricians are only aware of the basics and most of what they do know is outdated information.
2 Visit www.cff.org, the Cystic Fibrosis Foundation’s web site. It is the only web research you should do for now. Other sites have information on treatments, therapies and life span that are very outdated. When it comes to cystic fibrosis, you only need to know what is happening right now in CF treatments and research. Reading outdated information will only confuse you and may cause more panic.
3 Check your insurance information and make sure you know what your co-pays and prescription benefits are. Treatments and medications for cystic fibrosis are very expensive and often times, insurance companies will fight with you over payments. Check with the social worker at the CF clinic about patient assistance programs and state health care programs that you may qualify for to help you cover the costs.
4 Begin any treatments that the CF specialist gives you right away. When it comes to CF, being proactive gives patients the best chance at a healthy life. Treatments and medications must become a part of your routine, and be as normal as brushing your teeth, if your child’s health is going to stay on track.
5 Find a way to contact other CF parents and patients in your area, or around the world. Many clinics have a patient and family CF advisory group that meets monthly. Or you can visit a web site like www.cysticfibrosis.com to connect with and get advice from other families that have been where you are.