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Your child’s primary physician can assess for a urinary tract or bladder infection. A urologist can assess bladder function. A nephrologist can assess impact on the kidneys. Complex care and palliative care clinicians can help adjust the care plan during decline.
Urinary Incontinence and Urine Retention
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Altered bladder function, called neurogenic bladder, is common in children with SNI. It occurs when input from the nervous system to the muscles in the bladder wall is impaired. Children may feel the urge to urinate frequently (overactive bladder) or may not urinate often enough (underactive bladder). Urine retention, or the incomplete emptying of the bladder, puts children at greater risk for urinary tract and bladder infections, kidney stones and kidney injury.
ESP Incontinence
Children learn to control their bladder as they mature, typically between the ages of two and three. Many children with SNI never reach the developmental stage that would allow them to have control over their bladder. This inability, called incontinence, interferes with the child’s ability to become toilet trained. Some may initially train but as the underlying condition worsens, the messaging between the brain and the bladder becomes impaired and they lose the ability to control their bladder.
Urinary Retention
An underactive bladder can cause urinary retention. This means that the contractions of the muscles in the bladder wall are not coordinated with the sphincter muscles that need to relax in order to let urine out of the bladder. Urinary retention is suspected when the bladder becomes too full and distended (swollen), because it cannot initiate emptying or does not empty completely.
Problems that can occur from retaining urine, or prolonged time between each passing or void of urine, include urinary tract or bladder infections, an enlarged bladder, and damage to the bladder wall if high pressure in the bladder is not identified and treated. A kidney stone might also be blocking the flow of urine. Let the medical team know if your child experiences more than eight hours between voids. The medical team will ask if your child has constipation, as this can interfere with the emptying of urine from the bladder. They may also consider referring your child to a urologist.
Testing and Catheterization
The urologist will review how frequently your child voids (urinates) and will ask if there has ever been a bladder infection. Tests that will be considered include an ultrasound to assess the anatomy of the kidneys, bladder and tubes that pass urine between organs. A test that measures bladder function, called urodynamic testing, might be ordered. This test can measure how much urine the bladder can hold, the pressure within the bladder, and how well the bladder empties when it is full. This test requires placing a small tube (catheter) into the bladder and the rectum to fill the bladder and measure pressures within the bladder and abdomen.
The urologist will use this information and consider if any intervention is needed. Treatment might include medications, depending on test results. Clean intermittent catheterization (CIC) might be recommended. CIC involves using a thin, flexible catheter that is inserted through the urethra, the tube through which urine leaves the body, into the bladder to drain urine. If needed, you will receive training and information about obtaining needed supplies. In some situations where CIC is not feasible or possible, a surgery may be done to divert the urine to a stoma. The urine is then collected into a special bag that affixes to the skin called an appliance.
ESP As your child with SNI develops beyond the age when a neuro-typical child is able to control their bladder (continence), the burdens of toileting them will increase. A larger child means a bigger diaper, bigger diaper bag, bigger loads of soiled linens, and a bigger reservoir of continued flexibility required to address unexpected toileting events (for example, if you are out of the home, where and how to change a diaper of a child too big for a changing table or who needs to sit for long periods of time to urinate or have a bowel movement). You may also feel frustrated by the limited number or quality of the products available to deal with incontinence.
Many parents express feeling trapped at home or exhausted from planning around their child’s toileting needs. They also express a feeling of otherness, as our world is not well set up to accommodate the challenges of caring for a larger, incontinent child. Other parents are often the best sources for creative ways to lessen some of the challenges of having an incontinent child, and often are the best source to validate your feelings and find emotional support.