Every baby that is born in the state of Minnesota, unless a parent opts out, will now be tested for 67 serious conditions, including Duchenne Muscular Dystrophy. MN passed this in 2024 and started testing in February of 2025. There are only 2 other states that are actively testing (OH and MA), 2 more have passed the legislation but have not started testing (NY and AZ) and 18 more states have the legislation pending. With about 66k babies born annually in the great state of MN, this means about 6 babies will be diagnosed due to this newborn screening.
Advocates worked tirelessly to get this passed so that families do not have to spend months or years of their lives trying to find a diagnosis, like we did. For those that don’t know our diagnosis story (future blog post), we spent nearly 3 years trying to figure out what wasn’t quite right with Caleb, finally receiving the Duchenne diagnosis in 2018.
I have mixed feelings about newborn screening. A part of me things how nice that would have been that we wouldn’t have had to spend years in discovery, but the other part of me has different feelings.
We got to live for 4 years before we were forced to add Duchenne into our vocabulary. I could look at my boys without knowing that the steps they were taking were soon to be their last. I could look at my boys without knowing that their lives will be cut short. I could look at my boys without knowing the pizza they were eating would soon be too hard for them to eat independently. I could look at my boys without knowing that I would be their caregiver until they are no longer on this Earth. Ignorance is bliss.
So what does newborn screening mean? It means that if I knew I was a carrier of Duchenne, Caleb and Dunky may not exist. But more realistically, it would mean that we would know that Caleb had Duchenne. Caleb had a traumatic entrance into this world. He was intubated immediately upon arrival as he had Wolff-Parkinson-White, a heart condition that cause his heart to skyrocket into the 300’s at any given moment. This can be managed by medication once detected, but he had this undiagnosed in utero. I don’t think I could have handled more bad news.
I can barely admit what this also might mean. It would likely have meant that Dan and I would have made different family decisions. Once you have a boy with Duchenne, and I find out I’m a carrier, the chances of another boy having this disease are 50/50. It’s a bit different if you have a girl, but the worries still remain.
For those of you that know Dunky, a world without him would truly be terrible. I know he is a bit of a menace, but to know him is to love him. I also know he thrives because of the people that spend time loving him including (but limited to):
Us, his parents. He’s so naughty, but yet fills our soul and completes our household.
His older brothers, AJ and Ben (and Sydney!): He adores this crew and is so lucky to have older siblings to show him the way.
Minnie, Papa and Grandma Lori: the grandparents. Say no more as they are so special.
His cousins, Maggie and Cole, and their parents, Deb and Mark, who go out of their way to build a relationship with Dunky, and therefore know his tactics/strategies.
His cousins, Vernie and JJ, and Aunt Krissy and Uncle Jared: They have spent time (probably more than they wanted) understanding Dunky and even jotting down unforgettable phrases.
His aide, Mrs. Sally. A gift from God and the bond they have is something to write home about.
His PCA, Evan. He takes time to know how Dunky functions and knows exactly how to manage him.
Ellie, Dylan, Quinn, Bea and London, Dunky’s girlfriends that they treat as one of them.
My college friends that recognize things are hard and swoop in to make things amazing for the boys. Dunky sometimes says those girls are a lot, but in the same breath says how he is so happy they are my friends. Spot on, Dunky!
So there you have it. I don’t doubt that newborn screening is the right thing for the future, in particular as treatments become available for kids earlier and earlier. But what is also true is I’m glad I didn’t have that in my day. I would miss Dunky. The picture below is one of the last pictures I have before they were diagnosed and the others are real time to demonstrate they are sill loving life!
