Most people don’t know much about Spina Bifida. I sure didn’t prior to Finn. It sort of shoved its way into my life uninvited.
Let me introduce you.
Spina Bifida is a neural tube defect that occurs within the first 20 days of gestation. It is the most common permanently disabling birth defect. In most cases the spinal opening also causes hydrocephalus (or spinal fluid swelling in the brain) that requires a shunt to regulate it. There is no known cause, though folic acid supplements can help prevent neural tube defects. There is no cure.
Basically Finn’s spinal column didn’t fully close in utero. Spina Bifida means literally “split spine.” So his nerves were exposed at the opening (lesion) and damaged. In most cases, everything at and below the lesion has some paralysis and loss of function. Finn’s lesion is at L4/L5. His legs, ankles, feet, bladder and bowels are thus affected. He also has a VP shunt on the right side of his skull that drains spinal fluid and keeps him alive. According to the chart below, Finn currently functions more at the L3 level. The lower the level on the spine, the more function the person will have.
We made the short trek to Children’s hospital on Tuesday for a major urology appointment to check up on Finn’s bladder/bowels. He had a urodynamics test administered when he was about 3 months old and again this week. He cried pitifully through the ultrasound to check his kidneys, but the sucker Pascha suggested made it a little more bearable.
To our surprise, he was a champ during the hour long urodynamics test–mostly thanks to Joey, his iPhone and PBS Kids on the screen above him.
Here’s what we found:
- Finn has a “safe bladder.” This means it drains properly and does not reflux back into the kidneys. When children die from SB complications, it’s usually due to kidney failure. This is a huge praise that Finn’s kidneys are healthy!
- Unlike most kids with SB, Finn does not currently need to be catheterized, as his bladder voids on its own.
- Finn’s problem is that the bladder and bowel muscles are weak. There is little to no innervation (nerve to muscle connection) in his bladder. When full, it is unable to hold urine. This is also true of his bowels. When Finn laughs or moves quickly, he will have leakage.
- This is fine, of course, in diapers. However, we suspect Finn will not want to be in diapers the rest of his life. So…
- When we decide it’s time–usually around the time a normal child would be potty trained–we will teach Finn to catheterize himself every 2-4 hours. This keeps his bladder drained and will help him avoid unwanted leakage and stinky wet drawers.
- He will also undergo a bladder surgery that will “build up the bladder neck” (whatever that means) to help the muscles prevent leakage.
- Another surgery will ensue for his bowels, most likely a “stoma,” or opening in his belly button to help him clean himself out periodically.
We don’t really comprehend all this means. It’s just a reminder that our son was born with Spina Bifida, will not lead a “normal” life, and will require us as his parents, to be his advocates and biggest fans.
Despite Adam Sandler’s attempt to make “peeing in your pants cool,” it’s not. And this part of Spina Bifida–aside from the whole wheelchair thing–will isolate Finn from his peers even more. I pray daily for his future friends. That they will be loyal, brave, kind, funny and not squeamish about Finn’s potty life.