"My Son Has Cystic Fibrosis"
Laura Farach, M.D., pediatrician
Baldwin Park, California
I know how sad it is: I diagnosed Nicolas with cystic fibrosis (CF) when he was a week old. My husband is a doctor, too, and I had treated CF kids in my practice, so we knew it was a very serious condition. (About 30,000 people in the U.S. have the genetic lung disorder, and about 10 million people carry the gene.) The news was crushing. The grief he and I felt was absolutely indescribable. But we just focused on caring for our baby.
How we live with CF every day: Nico, is a great kid. We try to make life as normal as possible, for him as well as for his sisters, Camila, and Carmen. When my daughters complain that his daily treatments take too long, I remind them that CF affects all of us. I tell them how proud I am that they look out for their brother.
Insider's guide to giving medicine: Nico takes ten different medications, which adds up to 35 pills a day. We learned early on that you can't make it a power struggle -- the consequences of missing a dose are too great. A little bribery is okay. Nico gets to pick what's on TV while he's taking his inhaled medication and wearing the compression vest that loosens mucus in his chest.
What to do when you have to hurt your child: When he was 2, Nico had to have a permanent central IV line placed in his chest. It took three of us to hold him down and change the dressings every third day. Something like that gives the terrible twos a whole new meaning. (Nico has had so many IVs that he started leaving used ones under his pillow for the IV fairy to take away!) If you must inflict pain on your child, try to have someone else do it; you can comfort him afterward.
Help others understand: Most parents know that regular exercise is crucial for clearing the thick mucus out of their child's lungs. But other people -- phys ed teachers and coaches -- often worry that too much exertion might be dangerous, so you need to explain. That's been easy for us because Nico is so active. He's the second-fastest boy in his class. He rides his bike, and he loves ice hockey, skateboarding, and in-line skating.
What I tell parents who ask, "What would you do if it were your child?": I hesitate to give any alternative remedy, like the fish-oil supplements some CF patients take. Nico takes so many pills, he doesn't need anything else, especially if it hasn't been proved to be effective. I encourage parents to look for clinical trials. They're the way miracles will happen. I also remind parents that cystic fibrosis is one of the most demanding of illnesses. We must be very disciplined with our children's daily medical regime so that we can keep their lungs healthy.
I'm optimistic: We don't discuss the prognosis of Nico's illness, which is much better than it was 15 years ago. Many people with CF now live into their 40s. When he asks me how long he'll live, I tell him that he'll grow up and marry and have a family, and that doctors and scientists are working very hard to find a cure. In fact, my father, who is a Ph.D. and researcher in physics, has developed a potential treatment that could dramatically improve the delivery of medications into the lungs, and we're testing it now. We're very positive about the future. Hope is truly the most essential medicine.