I have a admit that I am guilty. Bowel and bladder dysfunction are the most talked about yet least talked about; conflicting problem associated with spina bifida. At any gathering, us moms, will eventually talk about pee and poo. So many emotions and cultural predisposing ideations. If our kids had diabetes 99.9% of us would be giving our kids insulin. Yet when it comes to bladder dysfunction, so many of us will wait and wait and avoid testing and stall and try for second and third opinions. I know of nothing that gets more comments on an SB site then a question about pee or boo.
We all know why we stall. No one wants anyone between the legs of their little girl or boy. We are taught from the time we are little until the time we are adults that certain areas are private, no touching. And then suddenly, someone is telling us we need to invade that space every 4 hours for the rest of our kids lives.
I think it would help if us parents had more facts right from the get go. I admit that of all the areas about spina bifida, I know the least about bladder dysfunction. My child is 17 years old and I still do not know what all the test are specifically for, or the verbiage associated with this or that procedure. When Mel was younger, I shied away from the conversation with the medical team. I did actively discussed this difficulty with fellow SB moms. That’s not always good medical care. As Mel got older, it was easier to ask Mel’s medical team for additional information. That’s important. Information from those with medial knowledge is important.
The idea of this blog has spurred me to get more facts. I will list the resources I have found at the bottom of this blog. Is my data correct? Ask your medical team! Surely we all know by now that what we read on the internet can be inaccurate.
Good News. From what I can tell somewhere between 5% and 15% of kids with spina bifida will achieve dryness without cathing or medication. Over 90% of children with spina bifida will have a normal upper urinary tract (kidney and ureter) at the time of birth. 🙂
Bad News. Without follow-up, half of the 90%, mentioned above, will suffer considerable upper urinary tract damage due to lower urinary tract (bladder and urethra) difficulties. Most people with Spina Bifida need catheterization and/or drugs for complete bladder and bowel control. 😦
Let’s face it. Children with spina bifida usually have damage to nerves that control the bowel and bladder. These nerves exit the spinal cord between the sacral levels. The sacral nerves control some of the muscles in the feet, bowel and urinary bladder. The more your child can move his or her feet, the higher chance he or she will be one of the 5% whose bladder nerves were spared. Good for you guys 🙂
The goals of any urologic care and management is maintaining normal renal function and gaining urinary continence. At age 50, we want our kids to have their own kidneys. With proper urologic management, children at risk for renal damage can be identified early. With early identification, comes intervention to prevent long-term damage to the kidney function. Your kidneys are not something to mess with. Ask anyone who has had a transplant.
More Good News. The age at which children obtain urinary continence varies, but around ninety percent will be continent, during the day, by age 5. Continent and kidneys for life is the ultimate goal.
What are the common urological problems in spina bifida: urinary infections, urine backing up into the kidneys, and swelling of the kidneys from urine backing up and incontinence.
Why do these problems happen? Nerve damage is the root cause. The nerves that control the bladder and sphincter muscle may not work properly. The bladder is supposed to fill and store urine at low pressure and empty every few hours. If the bladder and or sphincter muscle do not work, the child is at risk for irreversible kidney damage.
Medical research over and over again tells us that children born with spina bifida can, probably, keep and use their own kidneys for a lifetime. To achieve this good urological treatment is essential. Without repeated testing and regular urological care the following are likely to happen:
- The bladder will be overworked. The more overworked it is, the harder, more rigid, wavy, and bumpy it becomes. This, over time, will shrink the size of the bladder (not reversible), and also change what it can hold. This means leakage, and potential reflux. Reflux equals kidney damage.
- The kidneys will get damages (scaring) and need replacing. That sounds fun
- The child will not be able to achieve continence and that, my friend, is noticed by peers.
The best plan of care is to ask questions, get your information from medical professional and research using medically knowledgeable sites. To learn all about the different tests, what the test are for and such, I recommend you start by looking here:
Then visit your child’s medical team and ask good questions. Over the years I sure have learned it’s best to ask questions and not shy away from my child’s medical team. Most are happy to explain how and why they do things. I happen to be one of those mom’s who tend to buck the system and try to reinvent the wheel. That is ok. However, I need to be careful because my child’s quality of life may be affected if I talk without listening. If I push for my way without facts. Yes, some clinics tend to use what I call “cook book” plans of care. As I have gotten older, I have come to realize that “cook book” has medical science to back it up. I have to learn to listen better. My child is watching and in 2 years, she will be running her own plan of care.
- Do not avoid due to fear
- Listen with an open mind and always
- Always ask questions
You are your child’s best advocate. Strive to also be the informed advocate.