Interstitial lung disorders are among the least understood in medicine. They are a diverse group. Many with unknown causes. This can lead to confusion and frustration among families looking for answers, as seen in the story that follows.
You can help!
Additional research is desperately needed. The chILD Foundation is an organization working to find cures for this terrible disorder. Please make a donation, spread the word or blog about this disease and help give renewed hope to families such as the Robersons and Julia.
Julia Roberson and chILD
Julia was born a healthy full-term baby. Somewhere around her fifth month she started having trouble. We were in and out of the pediatrician’s office at least once a month with some sort of “cold”. It was finally discussed that Julia’s chest was not growing properly and that could be a reason for all the illnesses. What started out as a simple check into Julia’s sunken chest, (Pectus Excavatum), in December 2003 developed into a much larger ordeal.
The pectus, we were told, would have to wait; Julia had a very rare lung disease. We were in total shock and were very angry with that doctor. We immediately sought a second opinion. Doctors and other medical personnel did countless blood tests requiring painful needle sticks for Julia, numerous x-rays, two different CAT scans, swallowing tests, sleep studies, and pH probes which revealed that Julia also has GERD, or acid reflux disease. Doctors said they “think” the acid is being aspirated into her lungs and caused her lung condition. Or, when she was around five months old, she caught a common cold virus, RSV. For some unknown reason, the virus caused a “lung injury”, meaning the lung tissue around the very small airways and the air sacs became inflamed, then scarred, and have stayed that way. Much like a deep cut with stitches on your skin does. Even after it has healed the scar remains. This scarring can cause decreased oxygen levels, a rapid breathing rate, exercise intolerance, heat intolerance, severe allergies to particles in the air, crackle or “Velcro” chest sounds, poor appetite, which can all cause difficulty with growth and weight gain. Julia has for a long time been well below the normal growth charts.
Julia’s lung condition falls under an umbrella of a rare and complex category of lung disorders named Children’s Interstitial Lung Disease or “chILD”. There are a number of lung conditions associated with chILD. The severity of the disease has a wide range. We are extremely grateful Julia is alive and maintains a fairly normal childhood, because Julia has a mild form of chILD. Hers is manageable with medicines. Unfortunately, some children are not as lucky as Julia. Some children die of this disease within a few months of life. Some long to play freely with their friends without being tethered to an oxygen tank. Some parents sit, wait, and hope for a new set of lungs through a transplant, and then pray their child’s fragile body will accept them. There are still others whose parents just want to know what lies ahead for their child as they live with a chronic lung disease. Will they make it to kindergarten? Will they make it through high school or college? Will they marry and have children? Will they even make it through the night? Continue reading →
