A family story (SMA)

It's the phone call you never want to receive that ends up being the one you are most grateful for. 

Most parents don't remember saying yes to newborn screening. In the chaos of labour or immediate postpartum haze, new moms say yes to something that happens along with a hearing test and some other heart test and you'll only get a call if it comes back positive. You will likely forget about it. We did.

The phone rang the day before our newborn shoot. Our daughter was 7 days old. There's no real way to prepare for something like it. It's almost impossible to. She was born healthy. She eats, she sleeps, she looks completely fine so what do you mean she tested positive for something called Spinal Muscular Atrophy? They will tell you not to Google search and not to doom scroll, but if you're like me, in between the tears and breakdowns, you will. You will go deep down into a rabbit hole of old research and new and write down every possible question you have to prepare for your meeting that is in 15 hours. You show up, tired, anxious, nervous and in desperate need of clarity and an action plan. The doctors and nursing team don't know what you're feeling, but they've done this before and they know exactly what to say to help you see the hope that is on the other side of this.

That phone call will change your life. And in the short term, it might feel harder and heavier, but I promise you, it doesn't sustain. We are 22 months post gene therapy and it would almost be impossible to detect the difference between our daughter and any other 23 month old toddler. She walks, she runs, she talks, she plays, she lives a full and vibrant life and the only reason any of that is possible is because we said yes to newborn screening. We wish that we knew the value in it when we did, but the next best thing to that for us is making sure that we share our story so that expecting mom and dads actually do.