Family story (SCID)

When I was pregnant with my third child, I had a plan for how I was going to survive with three kids under the age of four. I bought baby carriers and researched activities that would keep my older two children entertained while I carried my newborn around. We were going to be out and about exploring the world - I had a plan!

Shortly after coming home from the hospital, I received a phone call just as we were about to leave for our family doctor's office for a newborn wellness check related to jaundice. I will never forget the feeling of my legs giving out as the person on the other end of the line told me they had the results from the newborn heel prick screening. Because I had never received a phone call after the screenings for my other two children, I knew that a call was not good news. I was told that our son had tested positive for SCID and that we needed to go to the hospital for follow-up testing. In the meantime, we were instructed to keep him isolated and away from the general public. We were also told to keep our appointment with the family doctor, and that they would notify the clinic ahead of time.

When we arrived, we were ushered in through a separate entrance. Everyone was fully masked and wearing gowns. This was their first experience with a newborn screening result for SCID, and they were unsure how to react. It was both eye-opening and terrifying.

As I often explain to people, we were living COVID-style isolation and screening protocols before COVID was even a thing. Needless to say, my original survival plan of being out and about with three young children changed dramatically. Thankfully, we had tremendous support from our family, along with an incredible team of doctors and nurses, and we managed to get through this challenging time. Because we knew about his SCID so early, we were able to limit his exposure to illness, protect him, and monitor him closely while determining the next steps.

I don't even want to think about the path we would have been on without newborn screening. It likely would have taken repeated illnesses, a lack of improvement, and failure to thrive before anyone began investigating what was wrong. By then, the outcome could have been very different.

I truly believe that newborn screening saved his life. We are so grateful to live in Ontario, where this screening is available.

Thank you,

Suzana