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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 5 replies, 4 voices, and was last updated 3 weeks ago by Brianna Albers.

  • Author
    Posts
    • #24401
      Brianna Albers
      Keymaster

      I have my first medical appointment since early March next week. I thought about postponing it (I technically only need to change my G-tube once a year, and I replaced it back in February), but decided to get it over with, on the off chance COVID gets worse this fall. I trust Gillette to observe social distancing and prioritize my health.

      Still, I’m a little nervous. I’ve honestly forgotten how to be around other people! For those of you who have been out in public, what’s it like? Were you anxious at all?

    • #24405
      Dennis Turner
      Participant

      I think region by region it is different, but in Massachusetts, almost everyone is wearing a mask, and most are being respectful.
      Just be careful and don’t fear.

    • #24407
      Alyssa Silva
      Keymaster

      Yeah I agree with what Dennis said. For example, I had to go to an appointment at the hospital last week. Of course, I was a little nervous. But I did everything I possibly could to protect myself that if I got the virus, it would be completely out of my control at that point, ya know?

      I wore a mask, used my blue light glasses to shield my eyes, and my mom also used a few pairs of gloves when we were in transit for doors and stuff. Pro tip: if you have to use an elevator, bring a q-tip to press the buttons.

    • #24408
      DeAnn R
      Keymaster

      I think the thought of going out is scarier than actually going out. Clinics take extra precautions, so I’ve felt the safest going there. We actually changed my gtube at home for the first time because I didn’t want to go in for that. But we can’t put our lives on hold forever. Get in, get out & hope for the best. Good luck!

    • #24733
      Brianna Albers
      Keymaster

      Ugh, I wish I was brave enough to change my G-tube at home! I’m such a wimp when it comes to that 😂

    • #24734
      Brianna Albers
      Keymaster

      Omg the glasses are a great idea! Definitely doing that the next time I’m out.

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