Not Cool to Pee in Your Pants

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.

SPINE4

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.

photo 2 photo 1

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.

photo 3photo 4

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.

photo

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.

Advertisements

6 thoughts on “Not Cool to Pee in Your Pants

  1. I love your honesty and I am so thankful that you share your prayers for Finn because that will be my prayers also. I believe that God will give you the knowledge to know the prayers for Finn and it will be a blessing to be apart of that prayer team. Love to you All!

  2. Cathing and a bowel program are not an option for me. Most of my childhood was spent trying to increase my bladder size, strengthening the muslces for both bowel and bladder, and failing miserably. My bladder is so small that I can cath and literally two minutes later pee. I can also have a bowel movement and shortly after leak.

    I am very thankful that my mother did not choose surgery when I was young. It such a life-altering choice, I want to make that decision for myself. Over the years I have looked into having surgeries and it’s just not worth the risk. Wearing a diaper is the only option and, frankly, not one I give a second thought.

    I have had a healthy, normal life. Not worrying about cathing, bowel programs or not making it to the bathroom to empty a bag gives me the freedom and confidence to be with my friends. Some of my friends know, most don’t. Those that do, don’t care. It has not isolated me from my friends or prevented me from being ‘one of them’.

    One of the issues my mother worried about, long before I had any interest in it – Being in a relationship. I was married had a very healthy sex life for many years (I still can if I ever decide to be with someone again). He knew about my problem. I made sure I went to the bathroom beforehand, not very romantic but it’s better than the alternative. *Sorry if that’s TMI*

    While I respectfully disagree that ‘peeing your pants’ is a bad thing, please understand I am not judging you or looking down on the choices you are making. I just want to express a different view. I hope your son will benefit from the choices you make for him.

    • Thanks so much for sharing your first-hand perspective! It’s so helpful for us to get a variety of opinions. Our uro dr didn’t offer this as much of an option for Finn…though we understand it’s our choice. Finn’s bladder has grown with him, thankfully, so we’re hoping it will continue to grow and that the frequency of cathing would be less. One thing we’ve thought about particularly for a boy is the lack of stalls in bathrooms for privacy. Most men’s restrooms only have one stall; the rest urinals. Doesn’t offer much opportunity to discreetly change a diaper or even cath. We have a year or two to finalize our decision and I’m so thankful for your perspective! Appreciate you.

      • I wanted to tell you more but I was afraid I had already told you too much. I decided you have the power to delete my post if it is. I won’t be a bit upset. Anyway, onward and upward –

        I want to elaborate on my diaper in public restrooms comment. Although I am short, 4 ft 9 in, I have never been skinny. Once I reached 12-13 years old the baby diapers were too small to use them as they are suppose to be used, but because of my height the adult diapers swallowed me, they still do. So, the problem was solved by using the diaper as a pad with panties. I’m sure it would be the same with boy’s underwear.

        It took quite a lot of practice at home but I finally got efficient at changing while on the toilet. All public places are required to have handicap stalls. Over the years I’ve found a few that didn’t and took them to task with the ADA. It’s a lot better than years ago. I recently discovered Huggies Overnight (I think that’s what they are called). I can go up to 9 hours between changes. I’ll never go back to anything else!

        You know, I’ve always been shy about discussing these issues publicly. I mean, who readily talks about their bathroom habits! I will say, though, you have given me the courage to be more open about living day-to-day with Spina Bifida. For that, I thank you. I might even start to blog about it more.

        That is all. 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s