Last year, the Arkansas Children's Hospital Cystic Fibrosis Center Coordinator contacted me about participating in a video that could be shown to parents after they receive a positive newborn screening for CF.
As background, newborn screening is a nationwide program to find babies born with certain health conditions, including cystic fibrosis. The Cystic Fibrosis Foundation was instrumental in passing legislation in all 50 states to screen newborns for CF, because early treatment may prevent serious, lifelong problems. If you have a baby in Arkansas in a hospital, they will be heel pricked and screened for 28 serious genetic diseases before you are discharged.
A positive newborn screening result indicates that a baby might have CF and that further testing through a sweat test is required in order to rule out or confirm an actual diagnosis.
By diagnosing CF early, CF health care providers can help parents learn ways to keep their child as healthy as possible and delay or prevent health problems related to CF. Early diagnosis and treatment can improve growth, help keep lungs healthy, reduce hospital stays, and years to life.
While we are extremely grateful for the newborn screening that ultimately led to Crosby's diagnosis at 15 days old, it wasn't easy to receive news that your baby has a potentially fatal genetic disease. The team at ACH and the Cystic Fibrosis Foundation have procedures, programs and information in place to help parents like us.
I wasn't able to participate in the video because of a work conflict, but Lance did. I think the video is fabulous and truly give an accurate picture about what parents of newly diagnosed CF babies experience. And, I think Lance was terrific!
Check it out!
(If you are viewing this on your phone or in an email, the video clips may not appear. The links are below).
The next video goes into a lot of detail on the actual sweat test. Feel free to watch the whole thing, Lance's portion starts at the 8:15 mark.
The CF Foundation has made amazing breakthroughs in research and treatment development in the past 5 years. I am confident that in Crosby's lifetime there will be a CURE for CF. We are on a crusade to raise money for the foundation in their pursuit for a cure, so that one day, no parent will feel the devastation Lance and I felt on October 3, 2013. If you want to help, please consider donating or joining our Great Strides Walk for CF here:
Love,
Carmen
