Bladder exstrophy is a rare condition that happens during fetal development, where the bladder develops outside of the body. The bladder is also turned inside out. Some children and adults with bladder exstrophy may use catheters or bladder irrigation supplies as part of their bladder management plan after surgery, depending on their healthcare provider’s recommendation.
If your child is living with bladder exstrophy, this resource explains how bladder exstrophy sometimes leads to the need for intermittent catheterization or bladder irrigation.
When catheters are prescribed, 180 Medical is here to help with caring support, high-quality intermittent catheters and related supplies, and helpful resources, including the 180 Medical Kids Club.
What is Bladder Exstrophy?
Bladder exstrophy is a rare condition that affects how the bladder forms while in the womb. Many families don’t know about this condition until late in the pregnancy or at birth.
Bladder exstrophy doesn’t always involve only the bladder. It may also affect other nearby organs or parts of the body.
Children born with bladder exstrophy may have other closely related conditions, often called a bladder exstrophy-epispadias complex (BEEC). This may involve issues where the urethra is undeveloped or underdeveloped at birth.
In more serious cases, a child may have cloacal exstrophy, which involves the bladder and intestine both being exposed outside the body. It can also affect the genitals and pelvic bones.
Often, children with bladder exstrophy have a condition called vesicoureteral reflux, which causes urine to flow backward up the ureters (the tubes that connect to the kidneys).
How is Bladder Exstrophy Treated?
Your child’s surgeon, pediatric urologist, or specialty care team will be the best source for recommending and explaining the right treatment plan, which may include surgery.
Because the bladder is exposed in bladder exstrophy, reconstructive surgery may be recommended since the bladder will not be able to store or pass urine normally. Without treatment, complications may include urinary incontinence.
The surgery may involve complete or staged repair of the bladder and the abdominal wall, as well as any other parts affected, such as the urethra or genitals. In some cases, surgery may happen soon after birth, although in some cases, it can be done a few months later.
Sometimes, as a child grows, an additional surgery called bladder augmentation may be needed if the bladder is too small to store urine. This involves taking a piece of intestine to repair and increase the size of the existing bladder. After bladder augmentation, because the intestinal piece will continue to produce mucus, your child’s healthcare provider may recommend urinary bladder irrigation to clean out the bladder, which may sometimes be done at home with an intermittent catheter and a catheter tip syringe.
Why Some People with Bladder Exstrophy May Need Catheters
Some people born with bladder exstrophy may need to use intermittent catheters to help drain the bladder, based on a healthcare provider’s recommendations when the bladder does not empty on its own or does not empty completely.
Some people may catheterize through the urethra. Others may need to catheterize through a surgically created channel in the abdomen, known as a Mitrofanoff.
Your child’s healthcare provider will instruct you on what type and size of catheter may be right for your child, how often to catheterize them, and what problems to watch for.
Catheters and Irrigation Supplies for Bladder Exstrophy
Depending on your prescription and treatment plan, catheter and irrigation supplies may include:
- Intermittent catheters (usually a pediatric or male length catheter, depending on anatomy and needs)
- Catheter Lubricant (if using an uncoated straight catheter)
- Antiseptic wipes to cleanse the area of insertion
- Gloves
- Drainage bags or a closed system catheter option with an integrated collection bag
- Sterile saline or another irrigation solution, if prescribed
- Irrigation syringes, if prescribed
Bladder irrigation and intermittent catheterization should be performed as instructed by your healthcare provider. Your child’s healthcare team will go over what solution to use if irrigation is required, how much to use, how often to catheterize or irrigate, and when to call with any concerns.
How 180 Medical Can Support Your Catheter Needs
180 Medical has over 20 years of experience in supplying high-quality intermittent catheter supplies to people of all ages, including newborns. We have Pediatric Catheter Specialists on staff who can help guide you through insurance coverage for the supplies you need, answer product questions, and offer ongoing support.
We offer a wide variety of pediatric catheters and other catheter lengths, types, and options from leading, trusted brands. Plus, we offer unique, totally free resources just for parents, caregivers, and children who need to use catheters, including HowToCath.com, where you can find step-by-step product video guides and printable or downloadable instructions for self-catheterization.
When your child is ready to learn to self-cath, we also offer the 180 Medical Kids Club.
It’s a free program that supports you and your child as you adapt to a new catheterization routine, making the process normal and understandable. It emphasizes the importance of hygiene and safety while engaging your child with relatable characters, including a boy named Ethan who caths through a stoma.
If you’re looking for a reliable supplier, we’re ready to help you. Contact us today to get started.
Additional Resources for Parents of Children with Bladder Exstrophy
If you’re a parent with a child born with bladder exstrophy, you have more options for helpful resources as you navigate this new and unexpected journey.
This downloadable Bladder Exstrophy Handbook, provided by Boston Children’s Hospital, provides in-depth information on this condition, including diagnosis, treatment, causes, and symptoms.
aBEc (Association for the Bladder Exstrophy Community) is a helpful resource for anyone wanting to learn more about this condition. They also include links to online support groups for adults with bladder exstrophy.
Disclaimer: This article is for informational purposes only and is not intended as medical advice. Information provided on 180medical.com should not be used as a substitute for medical advice, diagnosis, or treatment from a qualified healthcare professional. Please consult your healthcare provider with any questions about your condition, treatment, or medical supply needs.
