For the bladder this means frequent spasms that thicken the bladder wall making a small bladder capacity and risking urine refluxing backward into his kidneys. This reflux can permanently damage the kidneys. (If your kidneys are too damaged you either need a transplant or you die.) Mason's body does not feel when he needs to pee and he has no control of the peeing process (either peeing on purpose or holding it to get to a bathroom). This will not change as he grows up.
Right now Mason is on a bladder medication called Ditropan to stop the spasms. It has some side effects, including dry mouth, lack of sweating, and easily overheating. The medication paralyzes his bladder to stop the spasms, which keeps the wall from thickening.
We need to catheterize him regularly to empty his bladder now. Based on measuring the volume of urine he holds, pressure in the bladder at different volumes, etc, we currently cath Mason every four hours: 8am, 12pm, 4pm, 8pm, 12 midnight. Mason gets a break from midnight to 8am (yes, we get up at midnight every single night to cath him.) He usually stays pretty dry between cathing. If he laughs a lot or cries a lot around the time he is due to be cathed he will leak. He wears diapers and will continue for the foreseeable future.
Mason has already begun to take an interest in taking over his own cathing. Right now that means he likes to help hold the catheter once it is in place and he helps remove the catheter when the bladder is empty. Around age 5 or 6 he should be able to cath from start to finish independently.
A Bit of Back Story:
I remember the first week home from the NICU with Mason. Cathing was so hard that I cried nearly every time. I had this squirmy baby who wanted to be anywhere but laying on his healing back surgery and head incision from his first shunt, I was recovering from my own major surgery and dealing with postpartum hormone changes, and cathing an uncircumcised little boy posed its own challenges. Doctors were not willing to consider circumcision until Mason was several months old, had been evaluated by the urologist, and was healed from the major surgeries he had already been through. I remember crying and thinking I would never figure this out. Now I can laugh at it. A little practice and cathing became our new normal. Not only can Daddy and I cath him, we've taught two other people as backup (Grandma and big sister Makayla).
That's all for today! If you have any questions related to Spina Bifida feel free to leave a comment and I might just feature it in a post this month!