The Ontario Newborn Screening Program (ONSP) screens newborns for a wide range of medical conditions including cystic fibrosis.
My baby’s newborn screening has come back showing a possibility that they may have CF, what happens next?
The newborn screening results will come back and show if there is an elevated IRT and how many disease mutations were identified on your baby. Within one to two weeks of getting the results you will be booked in for a sweat test to be performed which is the ‘gold standard’ test to determine whether or not your baby has CF. The sweat test will happen in the morning in the PMDU. The results take approx 2 hours to return. Once the results return, you will meet with the genetic counselor and a paediatric respirologist to review what they mean.
The sweat test was negative, now what?
Should the genetics show one mutation, there is a good chance that your child will be a carrier of CF. The genetics counselor will discuss what this means as your child may need to know this for later in life when having their own children.
The sweat test was positive, now what?
The CF nurse case manager will also meet with you and provide you with information on CF to take home and read. You will be booked in to the CF clinic the following Wednesday to begin learning about the disease and its management. You will come once a week for six weeks. If everything is going well, we will slowly increase the amount of time between clinic visits until you are spread out to every 3 months.