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necessary resources. Understanding how families will manage logistics for appointments, including potential issues with ights or long-distance travel, is crucial.
Financial challenges related to insurance coverage or lost wages due to prolonged
hospital stays and frequent appointments are common. Support such as FMLA
paperwork and other resources should be provided and reassessed after surgery.
Logistics regarding the care of siblings and accommodation for parents during
hospital stays must also be planned. If there are barriers in these areas, a social work
consultation is recommended to thoroughly assess available resources. Essential
requirements include access to running water at various temperatures, temperaturecontrolled environments, well-lit areas for wound care, and necessary medical
equipment and medications. Considerations for travel logistics, especially when the
child is in a brace or spica cast, are critical. It is important to note that the child may
not t in standard strollers or highchairs, which could be a nancial burden.
Reducing anxiety involves preparing the family for what to expect. Setting realistic timelines for surgery and post-operative recovery, including time in the NICU,
regular wards, and overall hospital stay, helps manage expectations and alleviate
stress. Repeatedly discussing the plan for post-operative care, including immobilization, tube placement, and removal schedules, provides reassurance and helps
families feel more at ease.
Providing educational handouts during preoperative visits can be very benecial,
as families often need time to learn and process information across multiple encounters. These materials should cover the basics of BE, what to expect during and after
surgery, and details on post-operative care, particularly regarding the various surgical tubes and their maintenance. Information on the type of orthopedic traction—
such as external xation, SPICA cast, or other braces—which often worries families
the most, should also be included.
Nurses play a crucial role in reinforcing the surgeon’s explanations, detailing
what will happen during the surgery. Visual aids like diagrams, images, or even
dolls set up with external xations can enhance understanding. It’s important that
nurses not only repeat this information but also provide written documents to complement verbal discussions.
For families unfamiliar with hospital settings, understanding inpatient procedures
can be overwhelming. Nurses should explain the daily routines, including who will
perform specic checks and when these will occur, helping families plan and prepare. Detailed information about inpatient logistics is also essential, such as who can
stay overnight and what personal items to bring from home. This guidance helps
manage expectations and reduces the stress of adapting to the hospital environment.
Post-operative Nursing Care
Inpatient (Fig.24.1)
Post-operative inpatient nursing is crucial for successful surgery outcomes. It
requires nurses skilled in the anatomy and physiology of patients recovering from
24 Role ofNursing intheEarly Care ofPatients withBladder Exstrophy
397
BE surgery. Nurses continuously monitor pain control, wound integrity, signs of
adverse events, urine output, and infection risks. After the initial critical period, they
also provide essential teaching to families about post-discharge care.
Pain Control
Most patients receive an epidural for pain management post-surgery. Nurses play a
vital role in monitoring the epidural’s effectiveness and potential side effects. They
maintain open communication with the anesthesia and pain management teams to
adjust treatment based on the patient’s condition. The head of the bed (HOB) is kept
elevated at 30 degrees for 24h to reduce the risk of opioid migration. Nurses check
the epidural insertion site every 8h for any signs of infection or mechanical issues
like bloody, serous, or purulent drainage or any disruption of the tube.
Regular assessments include checking vital signs every 4h and continuous monitoring of pulse oximetry and cardiorespiratory status while the epidural is in place.
Pain intensity and scores are evaluated at least every 4 h or more frequently as
needed. Close monitoring for neuromuscular blockade is essential to prevent complications such as hypotension, muscle weakness, and paralysis. Early signs to
watch for include tingling around the mouth or lips, tremulousness, a metallic taste,
inconsolable crying in infants, or general agitation. More severe symptoms, indicating urgent medical intervention, include hypotension, seizures, ventricular dysrhythmias, and cardiac arrest.
The primary objective of post-operative pain management is to control pain
effectively while gradually reducing opioid use and avoiding medications that could
alter mental status. Pain assessment in children varies by age and includes selfreported pain scores, behavioral observations, and clinical indicators such as
changes in heart rate, blood pressure, oxygen saturation, and respiratory patterns.
Treatment may involve adjustments to the epidural, as well as administering IV and
oral pain medications.
It is crucial to integrate non-pharmacologic methods, especially for infants.
These include repositioning, providing consistent support from family or nursing
staff, reducing environmental stimuli like lights and noise, and offering comfort
items such as paciers, toys, or blankets. Techniques such as playing soothing
music, massage, therapeutic breathing, and guided imagery can also be effective.
Referrals to child life specialists can help parents understand and apply these nonmedication pain relief strategies that are suitable for their child’s age.
During the initial recovery phase when infants cannot be physically held, nurses
instruct parents on comforting techniques. As the child’s condition stabilizes, nurses
also guide parents on safely holding their child, who may be in a brace or cast.
Wound andTube Assessments
Nurses continuously monitor skin integrity, wound condition, potential urinary tract
infections, and catheter care. This vigilant monitoring ensures early detection and
management of complications, maintaining the overall well-being of the patient.
Wound assessment is crucial for preventing complications such as wound breakdown, which commonly occurs at the penopubic junction and may involve the
398
C. Fazzini et al.
bladder or urethra. In cases where a wound breakdown leads to a stula, diverting
urine ow is essential, as some small stulas may heal spontaneously. For those that
do not heal on their own, surgical intervention for closure might be necessary later.
More frequently, supercial wound breakdowns occur, which do not penetrate into
the urinary tract. These should be carefully monitored for infection and managed
with appropriate skin care to prevent further deterioration.
Nursing care also includes monitoring IV sites for signs of phlebitis or inltration during infusions and ensuring catheters remain patent until they can be safely
removed. Epidural sites should be checked every 8 hours for any abnormal drainage.
Immobilization
During periods of immobilization, it is critical to monitor the child for potential
complications arising from reduced mobility. These can include respiratory infections due to atelectasis, decreased appetite affecting nutritional intake and wound
healing, and constipation. Constipation not only increases the risk of urinary tract
infections but also leads to abdominal distention and straining, which can adversely
affect wound healing. Effective catheter care is imperative and varies depending on
the surgical approach used. Typically, children have a urethral catheter, a suprapubic
catheter, and two ureteral stents, occasionally accompanied by a wound drain. These
devices must be regularly checked for patency, kept clean and free from bowel contamination, and secured against accidental displacement.
GI Function andConstipation
Monitoring gastrointestinal function and nutrition is crucial for two main reasons.
Adequate nutrition is vital for effective wound healing, while regular bowel movements help prevent abdominal distention and straining that could impair the healing
process. During the immediate post-operative period, abdominal girth should be
measured every 8h to monitor for any signs of distention, which can indicate serious complications like abdominal compartment syndrome. This condition, characterized by abdominal pain, increased distention, shortness of breath, hypotension,
and oliguria, requires urgent notication of the surgical team. If there is no signicant distention, the patient’s diet is typically advanced starting from the rst postoperative day and gradually increased. If constipation occurs, interventions such as
suppositories or enemas may be employed.
Orthopedic Care
Orthopedic management in exstrophy patients involves both urologic oversight and
complex orthopedic procedures. Immediate post-operative care includes hourly
neurovascular assessments for the rst 24h, then every 4h or as needed. These
assessments focus on bilateral comparisons of pulses, capillary rell, skin color,
temperature, sensation, movement, and any signs of edema. Nurses must be vigilant
about new-onset edema, particularly if a patient has been positioned on one side for
extended periods.
For those in spica casts or undergoing external xation with Buck’s traction,
routine skin assessments every 8h are mandatory. Log rolling the patient every 2h
24 Role ofNursing intheEarly Care ofPatients withBladder Exstrophy
399
is recommended to prevent pressure injuries, and special attention is needed to pad
the skin under braces or casts and to oat heels off the bed to prevent pressure sores.
The initial 5days post-surgery are typically the most critical with restricted movement, after which the cast or brace may be opened for cleaning, and the child can be
held by family.
Routine pin care for external xation involves daily assessments and changing of
dressings as needed. Pin sites should be cleaned with a solution of half water and
half hydrogen peroxide, using a fresh cotton swab or gauze for each pin. Nursing
care plans should ideally coordinate patient bathing and bedsheet changes with pin
care routines. Any signs of infection at pin sites, such as fever, purulent drainage, or
redness, must be immediately reported to the orthopedics team.
Nurses efciently cluster various assessments during care activities, such as during the two-hourly log rolls, to simultaneously manage pain relief, check skin integrity, perform neurovascular assessments, and ensure the proper functioning of tubes
and drains. This comprehensive approach helps prevent complications and ensures
thorough and continuous care.
Parental Teaching
Nurses play a crucial role in educating parents about the timeline and expectations
during both the inpatient stay and the subsequent outpatient post-operative course.
The duration of the inpatient stay can vary, typically ranging from a week to
6weeks, with most lasting about 2–3weeks. Parents are educated on signs to monitor that could indicate complications, such as skin integrity issues, signs of infection, and urinary tract infections.
To ensure families can adequately care for their child at home, nurses employ
teaching methods like repeat-back or teach-back. These techniques conrm that the
family understands the care procedures and knows how to respond to potential complications. Parents are taught to perform regular assessments for skin health, infection prevention, and urinary tract health once the child is home.
It’s also vital for families to understand the appropriate steps to take if complications arise. Nurses clarify which situations warrant a direct trip to the emergency
room, which issues should lead to a call to the medical ofce, and how to handle
non-urgent concerns. Information about who to contact for urgent matters and the
appropriate hospital for emergencies, especially if they live far from the care center,
is provided. During these discussions, nurses also consider social and economic
factors that might affect care, offering support such as language interpretation and
help navigating the healthcare system. Planning for the logistics of follow-up
appointments, especially travel arrangements, is also discussed to ensure smooth
post-operative management.
Outpatient (Fig.24.2)
Once the child has been discharged, care shifts from the inpatient nurse to the outpatient nursing team. This time is critical for close communication with the family
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to review any concerns. Depending on the care center, patients may be discharged
with one or multiple tubes in place and often are still in traction devices.
In addition, the family will be scheduled for a series of close follow-up visits
with various imaging studies. The outpatient nurse can provide expectations for
ultrasounds as well as for cystograms to assess bladder integrity before cycling and
to assess vesicoureteral reux. Once bladder cycling with a suprapubic tube is complete, then the child will have the tube removed, so the nursing team can provide
expectations for this clinic procedure as well.
In the long term, the outpatient nursing team can keep in close contact during the
initial 6–12weeks post-operatively with ongoing education and expectations. Then,
as families continue to follow up at longer and longer intervals, they will continue
to support the physician in education and expectations.
Conclusion
Nursing care is essential in complementing and enhancing the treatment provided
by physicians from the immediate postnatal period through long-term post- operative
care. This chapter has outlined the foundational teaching and management strategies employed prior to surgery and during the critical post-operative phase.
Collaborating with an experienced exstrophy nursing team not only streamlines
care but also ensures a safer post-operative period and an overall enhanced experience for the patient, their family, and the entire care team.
Bibliography
Ahn JJ, Shnorhavorian M, Katz C, Goldin AB, Merguerian PA.Early versus delayed closure
of bladder exstrophy: a national surgical quality improvement program pediatric analysis. J
Pediatr Urol. 2018;14(1):27.e1–5. https://doi.org/10.1016/j.jpurol.2017.11.008.
Balthazar AK, Finkelstein JB, Williams V, Lee T, Lajoie D, Logvinenko T, Kim YJ, Chacko S,
Borer JG, Lee RS. Enhanced recovery after surgery for an uncommon complex urological
procedure: the complete primary repair of bladder exstrophy. J Urol. 2023;210(4):696–703.
https://doi.org/10.1097/JU.0000000000003593.
Haffar A, Hirsch A, Morrill C, Harris TGW, Crigger C, Garcia A, Maxon V, Di Carlo HN, Monitto
C, Gearhart JP, Hunsberger JB.Perioperative management of primary classic bladder exstro-
phy: a single institutional pathway to success. J Pediatr Urol. 2024;20(3):406.e1–7. https://doi.
org/10.1016/j.jpurol.2024.01.010.
Roth E, Goetz J, Kryger J, Groth T. Postoperative immobilization and pain management
after repair of bladder exstrophy. Curr Urol Rep. 2017;18(3):19. https://doi.org/10.1007/
s11934- 017- 0667- x.
The Impact ofPhysical Therapy
ontheBladder Exstrophy-Epispadias
25
Complex
SarahCooper andCarolineBergh
Introduction
Physical therapists are musculoskeletal specialists that are uniquely qualied to
assist in the development of muscle strengthening and facilitating the progression of
coordination of the pelvic oor musculature. This is particularly essential in the
development of a functional bladder for those with exstrophy-epispadias complex
as surgical repair and reconstruction typically occur in infancy or early childhood.
With only about 25% expected to void per urethra without reliance on catheterization or urinary diversion, intensive physical therapy intervention could have a signicant impact on continence, quality of life, and health in BEEC [7].
S. Cooper (*) · C. Bergh
Department of Physical Therapy, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
e-mail: CooperS1@chop.edu; BerghC@chop.edu
© The Author(s), under exclusive license to Springer Nature
Switzerland AG 2025
A. R. Shukla, R. S. Joshi (eds.), Bladder Exstrophy and Epispadias,
https://doi.org/10.1007/978-3-031-91238-2_25
401
402
Pelvic Floor Musculature
S. Cooper and C. Bergh
The pelvic oor spans from the sacrum and coccyx to extend to the pubis and
ischium. Pelvic oor musculature provides support for the organs of the pelvic cavity and allows exion of the sacrum and coccyx. These muscles also control the
movement of bodily uids through the urethra and anus. Pelvic oor muscles are
under voluntary control, unlike the smooth muscles of the bladder, colon, and rectum. Pelvic oor muscles can inhibit smooth muscle involuntary contraction through
voluntary muscle control. Three muscles (puborectalis, pubococcygeus, and iliococcygeus) form a major portion of the pelvic oor, collectively known as the levator ani, and serve to carry the weight of the abdominal and pelvic organs. Specically,
the puborectalis provides active control of the anorectal angle by opening the anus
and the urogenital hiatus during defecation. The pubococcygeus is a sling-like
25 The Impact ofPhysical Therapy ontheBladder Exstrophy-Epispadias Complex
403
muscle that provides support to the overall pelvic oor area, and the iliococcygeus
supports the pelvic oor by providing a shelf for organs to rest. The coccygeus
(deep) also provides support to the pelvic oor. The levator ani and coccygeus form
a region of the pelvic diaphragm known as the anal triangle [12].
It is vital to remember that the muscles of the pelvic oor do not operate in
isolation. Organs and muscles of the respiratory system are critical in supporting
pelvic oor functionality. It is important to have postural support superiorly at the
larynx and inferiorly with the pelvic oor. The diaphragm is a major pressure regulator, separating the thoracic and abdominal cavities. Additionally, the proximity of
the pelvic oor muscles to the prime movers of the pelvis and lower extremities is
also important to note, specically, the piriformis and obturator internus, which
both serve as external rotators of the hip. The obturator internus has a direct connection to the pelvic oor via shared fascial attachments, as strengthening of the
obturator internus allows for increased overow strengthening to the pelvic oor.
Therefore, a dysfunction in the pelvic oor should be considered a dysfunction of
the core.
Muscular Differences inBEEC
It is theorized that bladder exstrophy-epispadias exstrophy complex (BEEC) arises
from a disturbance within the development of the mesoderm, specically the premature rupture of the cloacal membrane, from a mechanical obstruction of mesodermal migration, or disruption of the cellular functioning resulting in abnormal
development. As a result, disruption occurs to the structural alignment of the pelvis,
sacrum, and SI joint. Additionally, the anatomical alignment of the pelvic oor musculature is also impacted. The levator ani muscle bulk is generally smaller, and
presentation includes a attened, twisted, externally rotated which impacts the ability to provide adequate support to the pelvic girdle as well as the organs of the genitourinary system [14].
Physical Therapy Evaluation
Dysfunctional voiding is one component of pelvic health impairments that can
impact age-appropriate participation, social-emotional well-being, functional
mobility, access to education, and quality of life. Timing of interventions, such as
pelvic health physical therapy (PT), is critical in the development of continence in
addressing pelvic health dysfunctions [6].
Pelvic oor development begins in the early months of infancy, and therefore it
is important to initiate PT evaluations to determine what limitations a child has early
on in their BEEC journey. Ideally, evaluations are completed preoperatively as recommendations can be made to encourage strengthening and development of the
appropriate musculature prior to surgical intervention.
404
Health condition
Environmental factorsPersonal factors
S. Cooper and C. Bergh
(disorder or disease)
Exstrophy-epispadias complex (EEC)
Body functions/
Posture & alignment, strength, respiratory
patterns, skin integrity, sensory integration
Fig. 25.1 International classication of functioning, disability, and health (ICF) model
Body structures
Activities
Gross motor function
Participation
Participation in the home, school,
community, and social setting
Following surgical intervention, most children experience a period of delayed
development and loss of strength. Although most children can recover to their baseline without PT intervention, it is questioned if this is lost time for continued development and strengthening. As maximum strength and function is ideal for
continence, it cannot be said that this does not impact a child’s potential for continence in the future. When considering timing of a PT evaluation post surgery, a PT
evaluation should be completed once a child is cleared to bear weight through their
lower extremities.
A child should continue to be monitored and evaluated to identify areas of need.
The goals of the child and family will change as the child ages and should be reective of the current development and function of their muscles. A child will benet
from different goals during the pre-potty training stage as compared to the postpotty training stage. As potty training will look different in a child with BEEC, it is
important to identify the needs at these specic stages.
The International Classication of Functioning, Disability, and Health (ICF) can
be utilized to identify the important components of a PT evaluation within the participation, activity, and impairment level. Utilizing the ICF Model (Fig.25.1), physical therapists treat the impairments associated with health conditions, including
pelvic oor dysfunctions, such as BEEC.Therapeutic goals are established to allow
for the application of common principles in the treatment of bowel and bladder
impairments. Goals are targeted to address pelvic oor strength and coordination
while allowing for bladder capacity growth and creating optimal biomechanical
alignment during voiding while also supporting increases in participation and independence in social and educational settings, quality of life, and reducing the burden
of care on caregivers.
Participation
The primary goal of treatment in BEEC is to improve the quality of life for the child,
which can be signicantly impacted by urinary incontinence. This impact can be
signicant in the school, home, and social setting, including extracurricular
25 The Impact ofPhysical Therapy ontheBladder Exstrophy-Epispadias Complex
405
participation such as sports and social activities, including sleepovers, vacations,
and playgroups. Patient-reported outcome measures, including the cross-cultural
continence-specic pediatric quality-of-life measurement tool (PinQ) and
Dysfunctional Voiding Symptom Score (DVSS), can be used to qualitatively measure the effect of BE and corresponding symptoms in the home and community
setting.
Activity
An extensive history of bladder and bowel habits should be obtained. Questions
should include if the child is able to undress and dress independently, transfer on
and off the toilet, and complete hygiene independently, if the child is currently on a
voiding schedule, and if the child is currently toilet trained for bowel movements.
The current posture and equipment the child is using in the bathroom, including
stools, toilet inserts, and toddler toilets, should be noted. A picture can be obtained
to assess the posture and positioning on the toilet. An extensive bladder log can be
completed to determine the length of any dry intervals. This can include the use of
pull-ups or pads and the frequency at which these are changed. It is also important
to ask about the frequency and consistency of bowel movements. The Bristol stool
scale and urine color chart can be used to identify any concerns with constipation or
dehydration [17].
Given the differences in anatomy and muscular development in bladder exstrophy, it is important to assess overall gross motor development in this population.
The Peabody Developmental Motor Scales Third Edition (PDMS-3) is a comprehensive, reliable, and valid standardized test used to measure motor skills for children under 5years. The gross motor core subset is the culmination of three subtests:
body control, body transport, and object control if the child is over the age of
12months [5]. The Bruininks-Oseretsky Test of Motor Prociency, Third Edition
(BOT-3), is a comprehensive, reliable, and valid standardized test utilized to measure motor skills for children over the age of 5years. The gross motor composite is
the culmination of two subtests: body coordination and strength and agility [2].
Although these assessments are good indicators of overall gross motor function,
they do not provide information regarding the quality of movement and the use of
specic muscle groups. Therefore, additional assessments of the impairment level
are necessary. A gait analysis can also be benecial in identifying areas in need of
further investigation at the impairment level. It can be common to see increased outtoeing with slower cadence and velocity [15].
Impairment
The impairment level assessment for the BEEC population can be broken down into
distinct categories: posture and alignment, ROM and exibility, strength, respiratory patterns, skin integrity, and sensory integration.