My three-year-old son, John, was diagnosed with cystic fibrosis when he was two-and-a-half months old. He struggled with weight gain in his first months of life while doctors started testing him to find the cause. We were fortunate enough to have a pediatrician press for cystic fibrosis testing. When the test came back positive, treatment was started right away. Within a week, John’s condition improved. This was a time of uncertainty and fear for my family. If newborn screening for cystic fibrosis was available, we would have been able to start treatment much earlier.
Newborn screening for cystic fibrosis should be added to existing screening tests. Testing is a preventative measure that can save and prolong lives. Each visit to the doctor or hospital costs the health-care system. Spending money upfront to include testing will save money in the long term. I am ecstatic Nova Scotia has added newborn screening to their budget. There is no compelling argument as to why Newfoundland can’t do the same. Precedent has been set in the provinces with testing, in the United States and in Europe.
For Newfoundland and Labrador to be lagging behind is frustrating.
We hope our children will outlive us by many years. This is May, Cystic Fibrosis Awareness Month, and we are raising our voices for CF newborn screening with a province-wide campaign, featuring Cystic Fibrosis Canada’s celebrity patron, Céline Dion. The Newfoundland and Labrador chapter of Cystic Fibrosis Canada has collected over 1,500 signatures in support of screening in only two weeks, but we need many more. Visit www.cysticfibrosis.ca to sign our petition to bring newborn screening for cystic fibrosis to our province. Let’s make newborn screening for cystic fibrosis a universal standard of care in Canada.