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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 8 replies, 6 voices, and was last updated 8 months ago by DeAnn R.

  • Author
    • #21986
      DeAnn R

      For those of you who don’t know SPC stands for suprapubic catheter.  Until a few years ago I had no idea.  Since then I’ve learned that it’s an alternative to traditional catheterization and empties the bladder through a tube that’s inserted through an incision in the belly.  As such it requires a minor surgery.  As opposed to a traditional catheter many find them easier and more comfortable.

      Another option is a Mitrofanoff.  With this option a tunnel is created using the appendix.  You then urinate by using a catheter that connects to a one way flip valve by the belly button.  From my understanding this procedure is more in depth and takes a longer recovery.

      Personally I’m not familiar with either of these options.  I’m old school and simply hold it.  Not the most convenient I admit, but no one ever gave me these options when I was younger.  Now I have reservations about doing it.

      I want to hear from you.  How do you pee?  Are you “old school” like me?  Do you have an SPC? Mitrofanoff?  Some other option I’m not aware of?  Please share your stories if you’re comfortable doing so.  I think it’s important to talk about because had I known my options when I was younger I probably would have been more receptive to the idea.

    • #21999
      Rachel Markley

      Hi DeAnn! I LOVE my SPC! I’m happy to discuss but it’s way too much for a post. If you have specific questions or want to meet, I’m happy to!

    • #22002
      Adnan Hafizovic

      All types of catheterization are good options, so we can choose what suits us. I don’t use a catheter, I can still do it myself, I don’t know what you call it, the bottle I urinate into. Honestly being able to urinate alone gives me some satisfaction that I can still do something on my own. As you DeAnn didn’t know about the SPC until recently, neither am I, and I think the SPC is much better than just catheterization and if I used to have a catheter it would be the SPC.

    • #22008
      Kelly Miller

      Like Rachel said, it is an awful lot to post if I post my whole story about my SPC. But for the sake of informing people who don’t know, I will give you what I can.

      Much like you DeAnn, I went YEARS doing it the old-fashioned way of sitting on the pot. It was rough at times when a friend had to lay me on the public bathroom floor to get my pants down, or I went all day beginning at 5 AM to come home from work at 5:30 PM to a message from my mom saying she was going to be an hour late due to traffic, or having one beer too many at my college parties and having to race my chair across campus to my dorm to pee. And let’s not even talk about the stern lectures from my urologist as I sat thru the 100th office visit because I had another UTI or kidney stone. It was all just part of being disabled and living my life as close to normal as I could. I didn’t know there was any alternative other than wearing diapers, an option I definitely did not want to entertain.

      Then one day, after 52 yrs. of holding my bladder tight for over 12 hours at a time, I heard a rumor in 1 of the Facebook groups I had recently joined. After 52 yrs. of my bladder holding me hostage, I heard about the SPC. Much like you, I asked what it was. What you have written here is a very concise & accurate explanation of how both the SPC & Mitrofanoff procedures work. You have also accurately considered that the Mitrofanoff can have greater risk of complications (due to the need for general anesthesia), greater risk of infection, and greater risk of losing strength during recovery.

      I decided at this point that I would talk with my urologist to see what he thought about giving me a SPC. Since it takes a good 2 weeks to get an appt with my doctor, I had plenty of time to do research. I watched YouTube videos on the procedure. I read every medical article I could find. I asked at least a dozen people on Facebook who had one what they thought the pros & cons were of getting it. I have to say 1st, not one person had ANY cons to tell me. That’s pretty amazing when you think about it. As many medical procedures as we have had as a community, not one person could say anything they didn’t like about having a SPC. And in fact, most of them, were ecstatic that they had gotten one. By the time I got to the doctor, I had decided I was going to tell him we were doing it, however I was pleasantly surprised by his complete agreement. He said he thought it would be a great thing to do for me. He wasn’t worried about the actual “surgery” of it because he would use “twilight” anesthesia instead of general. He felt like it would probably help me with my UTIs since even the daily dose of antibiotics I was taking were not working. We scheduled it for the next Monday, and by the next day, I was back at my Tues. night church meetings. No recovery time other than the rest of the afternoon on the day of surgery.

      How do I feel about the SPC 5 yrs. later? I am ecstatic about it! I wish I had found out about it when I was younger only because I could have been spared all those yrs. of suffering, all those yrs. of doing harm to my body by not drinking water during the day because I didn’t know when I could go to the bathroom. But I don’t dwell on that aspect very much. Most of the time I’m just super happy that I found out about it and did it when I could. Of all the medical things I’ve been thru (both willingly & not), I can say that getting the SPC was the easiest and least problematic or painful. Even the monthly changes to put in a new catheter is routinely handled by my husband. We started going to the doctor every month to have him change it, but quickly realized that the time we would save in driving, waiting, & having him do it was tremendous. It takes my husband more time to lay out the supplies & wash his hands than it does to change the tube. And you know how you don’t even notice you have earrings in your ears anymore? That’s how it feels in my belly now. I don’t even notice that it’s there!

    • #22010
      Halsey Blocher

      I guess I’m old school as well. I’m not terribly familiar with any of this either. But I’m not fond of the idea of having any more surgeries, no matter how minor. And since I don’t usually have problems with UTIs or having someone to help take me, it doesn’t really seem necessary for my specific situation. One difficulty that I sometimes encounter is having to time bathroom breaks around times that I’m not home since I can’t use public restrooms.

    • #22016
      DeAnn R

      Thanks for all the info everyone!  Rachel, how long have you had one?  As Halsey mentioned I’m not crazy about the idea of surgery even if it’s just minor.  Having a foreign object and another hole in my body makes me hesitant as well.  I still hate my feeding tube after all.  It is great to have options though as Adnan pointed out.  As Kelly said, I’ve only heard positive reviews for those who have spc’s.  If I was younger I think I would definitely consider one of those options.  At the moment though I have the “if it ain’t broke don’t fix it” mentality.  Since I don’t have issues, I’m afraid it would cause issues.  For me I don’t think the benefits outweigh the downfalls just yet.

    • #22043
      Rachel Markley

      I’ve had it 3 months. I used to have a G-tube that I hated as well and my SPC is waaaaay less annoying! The surgery was seriously so easy as I only did twilight. It’s worth everything because of how much better I feel.

    • #22098
      Brianna Albers

      This thread was super informative! Now I’m considering getting an SPC 😂 It would literally make my life so much easier. What’s twilight anesthesia, though?

    • #22102
      DeAnn R

      Brianna, twilight sedation is when they don’t totally put you under, but just enough so you don’t remember a thing. Way better in my opinion than general anesthesia.

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