Spina Bifida and Continence Management in the Pediatric Population
By Rhonda Amrine, BSN, RN, CPN
February 15, 2012
Earn 2.0 CEUs for this e-learning opportunity.Spina bifida is a neural tube birth defect. Children with spina bifida have central nervous system dysfunction that may cause, among other things, bowel and bladder continence problems – this can have a major impact on their quality of life.
As clinicians, we can help these children achieve continence to some degree, in hopes of alleviating potential physical issues such as renal scarring or skin breakdown as well as psychosocial issues that can include poor self-esteem, lack of social support, and depression.
A good continence program for children with spina bifida should include goals for reaching developmentally appropriate independence and minimizing and/or eliminating bladder and bowel accidents. Standards of care for continence management exist throughout the country. According to theSpina Bifida Association of America (SBAA), a very important first step toward independence includes promoting “potty training” as early as is developmentally appropriate. A good rule of thumb is, if the child is old enough to know better than to soil themselves, then they are old enough to know that being on a good daily bowel regimen and catheterization is just “another way to go” (which is the title of a book written by Marlene Lutkenhoff, 2005).
For greater success, engage the parents, grandparents, older siblings, extended family and other caretakers in the continence program. Reaching independence in continence management by the age of 5 to 6 years old is optimal and is the goal that clinicians strive to reach in spina bifida clinics around the country.
A Sea Change in Care
Before multidisciplinary clinics, many children with spina bifida did not survive past their teen years. The cause of death was often due to kidney conditions such as vesico-ureteral reflux (VUR) leading to renal failure and kidney infections such as pyelonephritis that, when severe, often led to sepsis, a life-threatening bacterial infection in the bloodstream. Many children ultimately developed hypertension as well as renal scarring, which is irreparable and often resulted in a loss of renal function. For some children, their fate was kidney failure with the need for lifelong dialysis.
Today, multidisciplinary clinics can be found around the country and the clinicians are busy educating parents and patients that keeping the bladder and kidneys healthy will go a long way in adding to their life in both years and quality. To make these centers a multidisciplinary spina bifida clinic, a team that consists of multiple subspecialty services is recommended. At Texas Children’s Spina Bifida Clinic, for example, the chief physician is a developmental pediatrician who specializes in the care of children with special needs. In addition, the team consists of a urology surgeon, neurosurgeon, orthopedic surgeon, physical medicine and rehabilitation physician, as well as a social worker, dietician, child life specialist, spina bifida nurse and a clinic coordinator. An interpreter and volunteers are also a plus. Children with spina bifida will also need a primary care physician who can see to their well child visits and immunizations.
With scheduled evaluations and care at the multidisciplinary clinics, life expectancy for a child born with spina bifida extends well into senior years of late adulthood. The very first visit is often a prenatal visit for the parents. The baby should then be seen at six to eight weeks post discharge (after birth) and then every few months for the first year of life. From one year until the start of school, the child is seen every six months and then yearly until the age of 18. Young adults may be seen in a transition clinic where the physician directs their care throughout their young adult years. Young adults may also be seen by an internal medicine physician who is familiar with spina bifida.
Trends across the country are also encouraging the development of adult multidisciplinary spina bifida clinics. Transition works best if the child maintains good health and strives for independence in their medical care.
Crucial Steps for Managing Continence
The pediatrician should discuss continence at the very first visit, even if it is the prenatal visit. The parents need to be well informed in order to begin to understand, accept, become familiar with and adopt a good continence plan for the future.The team’s (pediatrician, urologist, and nursing) plan for continence management should involve:
- A pre-clinic review of interim patient history from last clinic visit and any diagnostic tests that have been performed (information that can be gathered by the clinic nurse).
- Pre-clinic team meeting to discuss patient history/updates/anticipated needs.
- A parent support group that takes place prior to each spina bifida clinic allowing the families to gather and network with each other.
- Initial visit assessment of the child, planning and early education that is based on each individual patient’s history, including diagnostic studies such as renal ultrasounds, voiding cystourethrograms (VCUG), cystometrograms (CMG), renal scans and lab work such as a creatinine. (A high creatinine can be an early indicator of kidney problems.)
- When catheterization is indicated, clean intermittent catheterization (CIC) should be taught by the clinic nurse at a time other than the child’s regularly scheduled clinic visit, unless it is an emergency, at which time the CIC teaching will take place in clinic. CIC is ordered by the physician after review of the diagnostic tests and will most often be done four times per day during daytime hours; though some plans may include only two or three times per day. Some children with spina bifida may not require CIC, just as some that may not have initially needed it will need it in the future. Thus strict adherence to protocols is imperative and should be stressed to parents.
- A conservative (nonsurgical) approach for bladder management – i.e., CIC and anticholinergics, such as oxybutynin, tolterodine tartrate and solifenacin succinate; and bowel management consisting of a stool softener by mouth each a.m., such as polyethylene glycol, lactulose, or senna to soften the stool; and some form of suppository or enema each p.m., such as docusate sodium, irrigation system or bisacodyl should be implemented first for each child. Bladder and bowel surgeries such as the Mitrofanoff and Malone Antegrade Colonic Enema (M.A.C.E.) should be discussed only after the medical approach fails.
- Post-visit phone support and troubleshooting should also be conducted by the clinic nurse.
In closing, it would be remiss not to mention that there have also been great strides in decreasing the number of spina bifida births by introducing folic acid into our diets. Be sure to visit the Spina Bifida Association of America website at
www.sbaa.org for more information.
Earn 2.0 CEUs for this e-learning opportunity.
Rhonda Bolin Amrine, BSN, RN, CPN, started her nursing career at Texas Children's Hospital as a patient care technician in May 1991. I graduated from Houston Community College August 1991 with an ADN. Within a few years, Amrine sat for the CPN exam and received my certification in pediatric nursing and by 1999 she received her BSN from the University of Texas Medical Branch - Galveston. During her first two years as a nurse, Amrine worked on the inpatient surgery unit where she took care of patients after urology, plastic, general or orthopedic surgery. She then became the nurse manager on the same unit for the next seven years. In November 2000 Amrine moved into the Texas Children's clinical care center as the only RN float nurse and within seven months, by physician request, she became the spina bifida clinic nurse.
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