Today's post is geared towards those of you who are parents or caregivers and are new to bladder management and catheterization.
Everyone with spina bifida should be evaluated by a urologist and have urodynamic testing performed. The urodynamics test shows how the nerves to the bladder are functioning, whether there are bladder spasms, how high the pressure in the bladder is, and bladder capacity. Urodynamics testing is also helpful when evaluating for tethered cord, because it can indicate whether there is tension on the spinal cord. Kidney health is a concern, because those with neurogenic bladder are at a higher than average risk for developing kidney reflux, so kidney ultrasounds are often performed in addition to urodynamic testing. There are different types of neurogenic bladder, and your urologist should be able to tailor your treatment to your particular issues.
If you haven't had to catheterize your baby or child, starting to catheterize can seem intimidating. Catheterizing is important for maintaining bladder and kidney health and can help in gaining social continence often in combination with medications that help reduce bladder spasms. My daughter has been catheterized since she was an infant, which is probably the easiest age to start at. It can be harder to start catheterizing a toddler or child who isn't used to it and doesn't like the idea. While there is a bit of a learning curve, once you get the hang of it, catheterizing is pretty simple. It only takes a little bit longer than changing a regular diaper.
Many children and adults practice clean intermittent catheterization using a clean (as opposed to a sterile) technique with sterile single use straight catheters. Your urologist or spina bifida clinic should have recommendations for what catheters will work best for your case as well as resources to teach you how to catheterize. As children with spina bifida grow up, they are usually able to learn how to self-catheterize by the time they are school aged.
Bladder problems and regular catheterizing do put people at higher risk of urinary tract infections and kidney infections. Prophylactic antibiotics can help prevent UTI’s. A certain degree of bacteria in the urine is normal for those who catheterize, but UTI’s that are symptomatic should be treated. Always check with your urologist if you think you or your child might have a UTI. One of the bonuses of regular catheterizing is that it is very easy to get a urine sample to take into the lab.
Catheterizing outside the home can be challenging. With a baby, you can easily catheterize into a diaper on any changing table. Older children usually learn how to catheterize themselves on the toilet independently. The trickiest age is toddlers and preschoolers who are too large for changing tables but too young and too small to catheterize on a toilet without a potty seat. Some kids also have trouble with balance and trunk strength, which makes using a regular toilet difficult.
So how can you catheterize on the go?
Bring a Potty Seat
If your child is comfortable using a potty seat that goes on top of a regular toilet, you can bring it with you and catheterize into the toilet. I would bring disinfectant wipes to wipe down the toilet before use and the potty seat after use. The only con is that you have to carry around the potty seat, which may or may not be inconvenient depending on where you are going and what else you need to carry.
Catheterize in the Car
Do you have a spacious car? You can use blankets or towels and a changing pad to make your car into a changing table. You can also keep all your catheterizing supplies in the car if you do this, which cuts down on the amount you have to carry! This works best in larger cars that have space and allow for privacy and is harder but still doable if you have a small car.
Catheterize on the Floor
This is my least favorite option, unless I am visiting somewhere with unusually clean floors. The floors in public restrooms can be very dirty, so you would need to have a towel or changing pad large enough for your child to lie down on in addition to your supplies.
Catheterize in the Stroller
Catheterizing in the stroller is my preference if we are out for a long time. Our stroller reclines to an almost flat position, but you can also catheterize when your child is sitting in the stroller. I use the handicap stall in the restroom and a changing pad under her to keep the stroller dry in case of drips or leaks. It is comfortable and clean in the stroller, and you can carry your supplies in a bag or in the basket if your stroller has storage.
Having to catheterize should never keep you from going out and having adventures. There are plenty of ways to work out needing to catheterize, even in unusual places. Just make sure to bring extra supplies just in case, keep things clean, and use the techniques you were taught by your urologist to minimize the risk of infection.