On October 17, the "Today" Show brought an upsetting story to us regarding what appeared to be a case of discrimination against a child. But things aren't always what they seem, even on a national network news show that one would assume does its research.
Today Show anchor Savannah Guthrie, along with show regulars Star Jones and Dr. Nancy Snyderman, M.D., told the story of 11-year-old Colman Chadam, who, we were told, was forced to transfer schools because he carries one gene for cystic fibrosis (CF), a genetic disorder affecting the lungs and digestive system, which causes early death. You must have two genes for CF in order to have the condition.
The problem for the school: They say Chadam poses a risk to other students, siblings who have CF.
The problem for the boy's parents: They say he doesn't have CF and therefore doesn't pose any threat at all.
The real problem: They're both wrong and they're both right.
The Facts about CF
The Cystic Fibrosis Foundation has answers to frequently asked questions about CF:
- CF is a genetic disease. To have CF, a person must inherit two copies of the defective CF gene, one from each parent.
- 1 in 31 Americans (10 million people) is a symptomless carrier of CF, meaning they have only one defective CF gene. If two CF carriers have children together, there is a 25% chance that each child will have CF.
- 30,000 Americans have CF. It is incurable and, with current treatments, only 50% will live to see their 37th birthday.
- There are 1600 CF mutations, or defective genes, some causing mild symptoms, others causing more severe symptoms.
- Those with CF do pose a health threat to each other because bacteria that can get trapped in their lungs is easily shared and can lead to life-threatening, irreversible lung damage. Because of this, the CF Foundation recommends that those with CF remain at least 3 to 6 feet apart. Children with CF can attend the same school, but should not be in the same classroom. CF carriers do not pose a health threat to those with CF.
The Trouble With the "Today" Show
According to the San Francisco Chronicle, which broke the story a few days ahead of the "Today" Show, Chadam does indeed have two defective CF genes, which technically speaking, means he has CF and would therefore be a danger to others with CF and vice versa. However, he had a negative sweat test (the main testing method for diagnosing CF), and has remained symptomless. His doctors have determined that his mutations are rare and since he has no symptoms, he doesn't have clinical CF. Basically, his case is unique and delicate. And even if he doesn't have symptoms, they could develop; therefore, his health is carefully monitored.
Confused yet? That's because CF is complicated, as is any disease. Each person is affected differently. Even among siblings with the same exact mutations, one can be relatively healthy, while the other is constantly ill.
Unfortunately, the program only furthered the confusion. If the school actually wanted to remove a student because he was just a carrier of CF, they'd be removing students on a regular basis, since 1 in 31 Americans is a carrier. The Today Show should have recognized that would make no sense and dug further. Instead, they relayed inaccurate information to millions of people about the Chadam case and CF.
But misinformation is often spread by news programs, and only those who know the truth, ever really know the truth.
How to Be a Good Participant in News Controversies
Now that that's (sort of) cleared up, there are steps you can take to ensure you and other parents have the correct information to properly and effectively care for your children.
Don't take for granted what you hear on the news regarding children's health and parenting topics. Reporters and television news shows are always on the lookout for controversial topics that will gain attention and get viewers to tune in. But they aren't the experts, and sometimes neither are their so-called "experts." For example: Synderman may be a doctor, but she isn't a CF specialist; it is likely that she only knows the basics about CF.
Research anything you hear that is of concern to you. If a study says that milk is bad for your children, don't just trust it — research it. Find out what led to the results of this study, talk to other parents, and your pediatrician, and make your own decision from there.
Talk to Other Parents
As soon as this CF news story broke, parents in the CF community were talking to each other about it and trying to understand it. And other parents who don't have children with CF were approaching CF parents with questions. This is the perfect thing to do. There are parents within your community and networks who have experience and knowledge about almost everything. One parent may have a child with epilepsy, while another has a child with CF. These parents are authorities on particular topics because they live with the conditions every day.
Go to the Experts
Visit reputable websites. For example, if you have a question about CF, go to cff.org, the website for the CF Foundation. You can also access solid sites such as WebMD, Mayo Clinic, and CDC.gov to find accurate and up-to-date information on children's health.
Use social media and the internet to your advantage when you hear inaccurate information on the news. Tweet about it, post on Facebook, and email news programs directly to let them know they reported bad information. The "Today" show may have confused everyone, even the CF community, with their reporting, but they were inundated with emails and comments about it, and the CF community and the CF Foundation made sure the right information became available.
It remains unclear as to whether or not Chadam's rights were violated in any way during the process of removing him from school. On November 5, 2012 he was allowed back into the school with special considerations that keep him and the two students with confirmed CF apart.