Materiały źródłowe

• #1 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  Bladder exstrophy is a rare condition that affects males and females. Only 1 out of every 20,000 babies born will have bladder exstrophy, and there is no known cause. […] Health care providers who treat children with bladder exstrophy work closely with both patients and caregivers to prevent skin problems. […] The first treatment for bladder exstrophy is surgery to close and place the bladder inside the body. The surgery is almost always done soon after a baby is born, within the first 2-3 months of life. […] After surgery, patients require ongoing care, which may include: Medications, Catheterization (passing a tube to empty urine from the bladder), Physical therapy to strengthen certain muscles to tighten and relax to allow urine to pass, More surgery is sometimes needed. […] Many people with bladder exstrophy need to take medicine to help the bladder work correctly. A person may also need medicine to treat or prevent bladder and kidney infections.

• #2 Clinical manifestations and initial management of infants with bladder exstrophy – UpToDate

  https://www.uptodate.com/contents/clinical-manifestations-and-initial-management-of-infants-with-bladder-exstrophy

  Clinical manifestations and initial management of infants with bladder exstrophy […] The diagnosis, clinical features, and initial management of bladder exstrophy are reviewed here. […] The surgical management and postoperative care of children with bladder exstrophy are discussed separately. […] Bladder exstrophy is classically characterized by an open, inside-out bladder (the inner surface exposed) on the surface of the lower abdominal wall and an open exposed dorsal urethra. […] Bladder exstrophy usually involves several organ systems in the body, including the urinary tract, reproductive tract, digestive system, muscles and skin of the lower abdominal wall, and muscles and bones of the pelvis.

• #3 Bladder exstrophy in children – Children’s Health Urology

  https://www.childrens.com/specialties-services/conditions/bladder-exstrophy

  Bladder exstrophy, also called exstrophy of the bladder, is a rare congenital (present at birth) birth defect in which the bladder is not contained inside the abdomen, but is visible on the outside of the body. […] Children with bladder exstrophy will have very poor bladder control and may also have problems controlling other muscles in the abdominal area, including in the digestive tract. […] In almost all cases, surgery is required to treat bladder exstrophy. Many patients require several surgeries, performed over several years as they grow and develop. Under the care of an experienced urology team, most children with bladder exstrophy will have bladders and sexual organs that are fully functional and normal in appearance. […] Generally, the first surgery to correct bladder exstrophy occurs when the child is just a few days old. The goal of bladder exstrophy reconstructive surgeries is to position the bladder inside the body so that it functions properly, first, and then to improve outward appearances.

• #4 Clinical manifestations and initial management of infants with bladder exstrophy – UpToDate

  https://www.uptodate.com/contents/clinical-manifestations-and-initial-management-of-infants-with-bladder-exstrophy

  Clinical manifestations and initial management of infants with bladder exstrophy […] The diagnosis, clinical features, and initial management of bladder exstrophy are reviewed here. […] The surgical management and postoperative care of children with bladder exstrophy are discussed separately. […] Bladder exstrophy is classically characterized by an open, inside-out bladder (the inner surface exposed) on the surface of the lower abdominal wall and an open exposed dorsal urethra. […] Bladder exstrophy usually involves several organ systems in the body, including the urinary tract, reproductive tract, digestive system, muscles and skin of the lower abdominal wall, and muscles and bones of the pelvis.

• #5 Bladder Exstrophy | Texas Children’s

  https://www.texaschildrens.org/content/conditions/bladder-exstrophy

  Bladder exstrophy typically involves additional defects in the urinary tract, reproductive organs, pelvic bones, lower abdominal wall muscles and skin, and rectum. […] Babies with bladder exstrophy require surgery after birth to repair the defects. […] The type and timing of surgery varies based on the child’s defect and overall health. The timing may be immediate, with initial reconstructive surgery performed a few days after birth, or it may be best for the child to postpone or delay surgery for several weeks. […] Children with bladder exstrophy require lifelong care by urologists experienced in the treatment of this rare and complex birth defect. Additional surgeries are often required throughout the child’s life to optimize bladder function and control. Ongoing emotional support is also critical to helping children and adolescents cope with the challenges of this condition.

• #6 Bladder exstrophy | Health Library | Memorial Health System

  https://www.mhsystem.org/health-library/con-20339069/

  Bladder exstrophy may be spotted on a routine ultrasound during pregnancy. But sometimes, the condition cant be seen until the baby is born. A baby born with bladder exstrophy needs surgery to close the bladder and repair other affected body parts as needed. […] The treatment for bladder exstrophy is surgery after birth. You may hear it called reconstructive surgery. The goals of surgery are to: provide enough space for urine storage, create outer sex organs that look and work acceptably, establish bladder control, also called continence, and help the kidneys work as well as possible. […] After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows.

• #7 What to Expect During Care for Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/centers-programs/bladder-exstrophy-program/your-childs-experience

  Expectant families that come to our hospital for an evaluation after receiving a prenatal diagnosis of a suspected bladder exstrophy/epispadias/cloacal exstrophy will have a series of outpatient appointments that will include: […] Meetings with one of our nurse practitioners and attending urologists who specialize in caring for bladder exstrophy/epispadias/cloacal exstrophy […] Consultations to educate families on every step of their childs path from delivery to their initial stay in our Newborn/Infant Intensive Care Unit (N/IICU) to surgery and postoperative care, as well as lifelong expectations […] An inpatient operation will be scheduled. The ideal of age repair is between 4 weeks and 16 weeks of age. […] After surgery, your child will be in a spica cast. They will stay in the hospital recovering for four to six weeks. Their inpatient care will include:

• #8 Ensuring Excellence in Care for Children With Bladder Exstrophy | Children’s Hospital Los Angeles

  https://www.chla.org/blog/experts/care-innovation/ensuring-excellence-care-children-bladder-exstrophy

  Childrens Hospital Los Angeles is one of just 11 centers in the countryand the only one in Californiato be designated as a Center of Excellence for Bladder Exstrophy Care by the Association for the Bladder Exstrophy Community. This designation demonstrates the teams ability to provide the highest level of care for patients with this rare disorder, in which the bladder and related organs develop outside of a babys body. […] To be a Center of Excellence, a hospital has to meet rigorous criteria for providing the highest standards of care for bladder exstrophy. Thats important not only in terms of surgical experience, but also the rest of a childs treatment. […] At Childrens Hospital Los Angeles, we have pediatric urologists but also orthopedic surgeons, GI specialists, anesthesiologists, neonatologists, physical therapists, nurses, a dedicated psychologist and more. It really takes that whole team working together to provide the best care for that child and family.

• #9 Bladder Exstrophy | Children’s Wisconsin

  https://childrenswi.org/medical-care/urology/conditions/exstrophy-of-the-bladder

  Children’s Wisconsin is a Center of Excellence and member of MIBEC (Multi Institutional Bladder Exstrophy Consortium) for bladder Exstrophy and Epispadias. Our goal is to help your child have good bladder health, bladder control, and lead a normal active life. […] Children’s has been designated a „Center of Excellence” in the treatment of bladder and cloacal exstrophy by the Association for the Bladder Exstrophy Community (A-BE-C). A-BE-C’s Centers of Excellence program is the first to recognize health systems that are meeting the highest standards of treatment for the rare conditions of bladder and cloacal exstrophy, including post-operative and long-term care. […] Your child will be treated by our specialty team consisting of urologists, orthopedic surgeons, anesthesiologists, nurse practitioners, and nurses who have experience with all areas of bladder exstrophy. Typical care begins with a visit to our Urology Program.

• #10 Bladder Exstrophy | Pediatric Urologists | Duke Health

  https://www.dukehealth.org/pediatric-treatments/pediatric-urology/bladder-exstrophy

  All children with bladder exstrophy need lifelong follow-up care to prevent bladder-control problems, urinary tract infections (UTIs), or kidney damage that can be caused by the condition. […] Planning your delivery at Duke University Hospital means you and your baby can both get the care you need from an expert team — labor and delivery specialists, maternal-fetal medicine doctors, pediatric urologists, pediatric orthopaedic surgeons, and specialized nurses who are experienced in treating this rare condition. […] Your newborn will remain in the hospital for up to six weeks after surgery, so its important to have experienced nurses who specialize in caring for newborns with bladder exstrophy.

• #11 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  If healthcare professionals spot bladder exstrophy during pregnancy, plans often are made for surgery right after birth. If the condition is found after a baby is born, the baby receives care in a special hospital unit. The baby may need to be transferred to a center that has experience treating bladder exstrophy. In either situation, healthcare professionals cover the newborn’s bladder with a clear plastic dressing to protect it. […] Standard care after surgery includes: Help staying still, also called immobilization. After surgery, infants need to wear devices that keep their lower legs still during healing. The amount of time a child needs to stay still varies. But usually it’s around 4 to 6 weeks. Pain management. Healthcare professionals can place a thin tube into the spinal canal during surgery to deliver pain medicine directly to the area where it’s needed. This gives babies consistent pain control and lessens the need for more-powerful pain relievers called opioids.

• #12 Bladder Exstrophy and Epispadias | Riley Children’s Health

  https://www.rileychildrens.org/health-info/bladder-exstrophy

  Bladder exstrophy is a congenital condition (identified at or before birth) that is visibly obvious at birth because the bladder is located partially outside the body on the lower abdominal wall. […] Children born with this complex may have a wide spectrum of physical abnormalities that affect their abdominal wall, bladder, genitalia, pelvic bones, anus and rectum. In the United States, treatments begin in the first weeks to months of life. Early treatments are necessary to preserve normal function of the bladder and to restore the genitalia to a more normal appearance and function. […] If you are a parent of a child born with bladder exstrophy, it is possible that you will go home with your newborn before surgery is done to repair the bladder. You can diaper your baby normally after covering the exstrophy with clear plastic wrap (the type used in your kitchen to keep food fresh). The purpose of the plastic wrap is to keep the bladder lining moist and protect it from exposure to stool and the diaper.

• #13 Bladder Exstrophy: Care by Age and Stage | 700 Children’s

  https://www.nationwidechildrens.org/family-resources-education/700childrens/2025/04/bladder-exstrophy-care

  Bladder exstrophy is a condition where a baby’s bladder sticks out through the wall of the stomach. Nationwide Childrens Hospital offers a two-stage care approach that gives families time to bond with their child, time to adjust and time to develop a plan with our experts. […] While the condition requires a lot of care, knowing what to expect at each age and stage can help families prepare for treatment as they go. Thats why it is important to connect with an experienced health care team who can help navigate the physical and psychological aspects of care. […] Some pediatric hospitals will perform surgery as soon as the baby is born but most will delay surgery for several months. Waiting to do the surgery is so helpful since parents can go home and bond with the newborn baby. This is the most important thing you can do as a new parent.

• #14 Ensuring Excellence in Care for Children With Bladder Exstrophy | Children’s Hospital Los Angeles

  https://www.chla.org/blog/experts/care-innovation/ensuring-excellence-care-children-bladder-exstrophy

  Successful long-term outcomes really start with that first repair. Our goals for that surgery are to place the bladder in the pelvis and make sure the bladder is able to empty and store urine safely, so we can keep the kidneys healthy. […] We also reconstruct the genitals and create a belly button. […] But most Centers of Excellence, including Childrens Hospital Los Angeles, now wait until the baby is 3 to 6 months of age. That allows families to go home with their new baby and have that all-important bonding time. […] We are in the midst of a prospective study on how to better prepare children and families psychologically for urinary reconstructive surgeries. […] Its incredibly rewarding to be a part of their journey.

• #15 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  The exstrophy-epispadias complex is a rare congenital malformation of the genitourinary system, abdominal wall muscles, and pelvic structures. […] Complex surgery in neonates and young children, as well as a prolonged postoperative course require close collaboration between surgeons, anesthesiologists, intensivists, pediatricians, and an experienced nursing staff. […] A well-established interdisciplinary team consisting of surgeons, anesthesiologists, pediatricians, nutritionists, pharmacologists, nurses, and child life specialists are essential in providing the environment for successful outcomes. […] During this time, pain management, nutritional support, and meticulous nursing care for osteotomy pin sites, surgical drains and stents, and skin integrity become a focus. […] Nursing staff are the frontline providers and essential partners in the team approach required for successful management of bladder exstrophy patients.

• #16 What to Expect During Care for Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/centers-programs/bladder-exstrophy-program/your-childs-experience

  Expectant families that come to our hospital for an evaluation after receiving a prenatal diagnosis of a suspected bladder exstrophy/epispadias/cloacal exstrophy will have a series of outpatient appointments that will include: […] Meetings with one of our nurse practitioners and attending urologists who specialize in caring for bladder exstrophy/epispadias/cloacal exstrophy […] Consultations to educate families on every step of their childs path from delivery to their initial stay in our Newborn/Infant Intensive Care Unit (N/IICU) to surgery and postoperative care, as well as lifelong expectations […] An inpatient operation will be scheduled. The ideal of age repair is between 4 weeks and 16 weeks of age. […] After surgery, your child will be in a spica cast. They will stay in the hospital recovering for four to six weeks. Their inpatient care will include:

• #17 Ensuring Excellence in Care for Children With Bladder Exstrophy | Children’s Hospital Los Angeles

  https://www.chla.org/blog/experts/care-innovation/ensuring-excellence-care-children-bladder-exstrophy

  Successful long-term outcomes really start with that first repair. Our goals for that surgery are to place the bladder in the pelvis and make sure the bladder is able to empty and store urine safely, so we can keep the kidneys healthy. […] We also reconstruct the genitals and create a belly button. […] But most Centers of Excellence, including Childrens Hospital Los Angeles, now wait until the baby is 3 to 6 months of age. That allows families to go home with their new baby and have that all-important bonding time. […] We are in the midst of a prospective study on how to better prepare children and families psychologically for urinary reconstructive surgeries. […] Its incredibly rewarding to be a part of their journey.

• #18 Clinical manifestations and initial management of infants with bladder exstrophy – UpToDate

  https://www.uptodate.com/contents/clinical-manifestations-and-initial-management-of-infants-with-bladder-exstrophy

  Clinical manifestations and initial management of infants with bladder exstrophy […] The diagnosis, clinical features, and initial management of bladder exstrophy are reviewed here. […] The surgical management and postoperative care of children with bladder exstrophy are discussed separately. […] Bladder exstrophy is classically characterized by an open, inside-out bladder (the inner surface exposed) on the surface of the lower abdominal wall and an open exposed dorsal urethra. […] Bladder exstrophy usually involves several organ systems in the body, including the urinary tract, reproductive tract, digestive system, muscles and skin of the lower abdominal wall, and muscles and bones of the pelvis.

• #19 Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/bladder-exstrophy

  Bladder exstrophy is a complex, rare disorder that occurs early on while a fetus is developing in the womb. […] Treatment for bladder exstrophy includes surgical repair. The goal of treatment is to optimize urinary control, to preserve normal renal function, and to optimize the appearance and function of the external genitalia. […] At Childrens Hospital of Philadelphia (CHOP), your child will receive coordinated, specialized care from a multidisciplinary team with extensive experience treating children with bladder exstrophy. […] Our multidisciplinary approach to caring for children with bladder exstrophy allows for a seamless transition from prenatal diagnosis to delivery and postnatal surgery, which will optimize the chances for the best possible surgical and social outcomes for your child.

• #20 Surgical management and postoperative outcome of children with bladder exstrophy – UpToDate

  https://www.uptodate.com/contents/surgical-management-and-postoperative-outcome-of-children-with-bladder-exstrophy

  Bladder exstrophy is a complex congenital anomaly that is treated surgically. Surgery is challenging, as bladder exstrophy involves the urinary, reproductive, and musculoskeletal systems, and, in some patients, the intestinal tract. Major goals of reconstruction are preservation of normal kidney function, development of adequate bladder storage and function (ie, urinary continence and emptying), and provision of acceptable genital cosmetic appearance and function. […] The surgical management and postoperative outcomes of children with bladder exstrophy are discussed here. […] The following approaches, or variations of such, are used to manage bladder exstrophy. The first two interventions result in correction of the underlying defect. […] Modern staged repair of bladder exstrophy (MSRBE) involves three staged operations and was initially developed in the 1970s. Subsequent modifications have been made over the past several years. […] Complete primary repair of bladder exstrophy (CPRBE) was introduced in 1989 with the hope that a single operation would achieve the goals of continence and preservation of renal function. However, follow-up studies demonstrate that many children still require multiple procedures following CPRBE.

• #21 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  Starting in the 1990s, interest in combined, all-inclusive repairs of exstrophy were rekindled for older children with failed primary closures and eventually in neonatal primary closures. […] The modern staged approach separates the repair into three stages: (1) Primary closure of bladder and abdominal wall, (2) epispadias repair, (3) continence surgeries. […] The use of pelvic osteotomy and immobilization is not without risk. […] In a recent large, survey-based, study of adult exstrophy patients, 50% of adult exstrophy patients required a bladder augmentation. […] An augmentation cystoplasty is commonly required in CBE patients following failed primary closures and patients with noncompliant and/or insufficient bladder capacity. […] Patients requiring augmentation cystoplasty typically also require concurrent CUD.

• #22 Surgical management and postoperative outcome of children with bladder exstrophy – UpToDate

  https://www.uptodate.com/contents/surgical-management-and-postoperative-outcome-of-children-with-bladder-exstrophy

  Bladder exstrophy is a complex congenital anomaly that is treated surgically. Surgery is challenging, as bladder exstrophy involves the urinary, reproductive, and musculoskeletal systems, and, in some patients, the intestinal tract. Major goals of reconstruction are preservation of normal kidney function, development of adequate bladder storage and function (ie, urinary continence and emptying), and provision of acceptable genital cosmetic appearance and function. […] The surgical management and postoperative outcomes of children with bladder exstrophy are discussed here. […] The following approaches, or variations of such, are used to manage bladder exstrophy. The first two interventions result in correction of the underlying defect. […] Modern staged repair of bladder exstrophy (MSRBE) involves three staged operations and was initially developed in the 1970s. Subsequent modifications have been made over the past several years. […] Complete primary repair of bladder exstrophy (CPRBE) was introduced in 1989 with the hope that a single operation would achieve the goals of continence and preservation of renal function. However, follow-up studies demonstrate that many children still require multiple procedures following CPRBE.

• #23 Bladder Exstrophy – Seattle Children’s

  https://www.seattlechildrens.org/conditions/bladder-exstrophy/

  Lifelong follow-up care is important for good urinary health. […] Our method of repairing bladder exstrophy with a single surgery was developed by Dr. Michael Mitchell, former chief of pediatric urology at Seattle Children’s. The procedure is called complete primary repair. […] We perform 1-stage repair when your baby is 3 to 4 months old. […] Each child is different, and children’s needs change as they grow and develop. We tailor treatment to your child, working closely with your family through all stages of life. […] We help your child and your family through the challenges of this condition. You’ll get support from child life specialists, social workers and many others, like lactation consultants to help with breastfeeding/chestfeeding your baby. […] Seattle Children’s leads the way in research to provide evidence-based care.

• #24 Bladder Exstrophy: Care by Age and Stage | 700 Children’s

  https://www.nationwidechildrens.org/family-resources-education/700childrens/2025/04/bladder-exstrophy-care

  Your care team will arrange a date for your baby to come for the first repair procedure. This is around three months after birth. This is called the initial closure surgery. […] The next step is called the Kelly procedure. This involves rebuilding the soft tissue of the bladder neck. It uses existing muscle and soft tissue to create the new neck of the bladder. […] Follow up around school-age years is important to see how well your child can hold their urine (continence) and if they are potty trained for school. […] As your child grows, ongoing care will help to make sure your childs bladder, kidneys and genitals develop and remain functioning in a healthy way. Many people regain continence after surgery and maintain it throughout their lifetime. […] The best predictor of positive adjustment in kids is a loving and accepting family who can talk openly with them about their condition.

• #25 Care for Children with Bladder Exstrophy | University Hospitals

  https://www.uhhospitals.org/health-talks/articles/2024/09/care-for-children-with-bladder-exstrophy

  Care for children with bladder exstrophy: Bladder exstrophy is a birth defect in which the bladder develops outside the fetus. The exposed bladder can’t store urine or function normally, resulting in urine leakage (incontinence). The Bladder Exstrophy Program at UH Rainbow Babies Childrens addresses the various needs of patients with this condition, combining advanced surgical intervention with holistic, patient-centered care. This program introduces the radical soft-tissue mobilization technique (Kelly repair), a single-stage surgical procedure not previously available in Northeast Ohio. […] This program is a collaboration with Professors Imran Mushtaq and Marc-David Leclair, who bring their global expertise to the program.

• #26 Bladder Exstrophy: Care by Age and Stage | 700 Children’s

  https://www.nationwidechildrens.org/family-resources-education/700childrens/2025/04/bladder-exstrophy-care

  Your care team will arrange a date for your baby to come for the first repair procedure. This is around three months after birth. This is called the initial closure surgery. […] The next step is called the Kelly procedure. This involves rebuilding the soft tissue of the bladder neck. It uses existing muscle and soft tissue to create the new neck of the bladder. […] Follow up around school-age years is important to see how well your child can hold their urine (continence) and if they are potty trained for school. […] As your child grows, ongoing care will help to make sure your childs bladder, kidneys and genitals develop and remain functioning in a healthy way. Many people regain continence after surgery and maintain it throughout their lifetime. […] The best predictor of positive adjustment in kids is a loving and accepting family who can talk openly with them about their condition.

• #27 What to Expect During Care for Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/centers-programs/bladder-exstrophy-program/your-childs-experience

  Expectant families that come to our hospital for an evaluation after receiving a prenatal diagnosis of a suspected bladder exstrophy/epispadias/cloacal exstrophy will have a series of outpatient appointments that will include: […] Meetings with one of our nurse practitioners and attending urologists who specialize in caring for bladder exstrophy/epispadias/cloacal exstrophy […] Consultations to educate families on every step of their childs path from delivery to their initial stay in our Newborn/Infant Intensive Care Unit (N/IICU) to surgery and postoperative care, as well as lifelong expectations […] An inpatient operation will be scheduled. The ideal of age repair is between 4 weeks and 16 weeks of age. […] After surgery, your child will be in a spica cast. They will stay in the hospital recovering for four to six weeks. Their inpatient care will include:

• #28 Bladder Exstrophy – Seattle Children’s

  https://www.seattlechildrens.org/conditions/bladder-exstrophy/

  Lifelong follow-up care is important for good urinary health. […] Our method of repairing bladder exstrophy with a single surgery was developed by Dr. Michael Mitchell, former chief of pediatric urology at Seattle Children’s. The procedure is called complete primary repair. […] We perform 1-stage repair when your baby is 3 to 4 months old. […] Each child is different, and children’s needs change as they grow and develop. We tailor treatment to your child, working closely with your family through all stages of life. […] We help your child and your family through the challenges of this condition. You’ll get support from child life specialists, social workers and many others, like lactation consultants to help with breastfeeding/chestfeeding your baby. […] Seattle Children’s leads the way in research to provide evidence-based care.

• #29 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  While current techniques achieve reasonable success in preservation of renal function, continence, and cosmesis, there are still discoveries that are needed to improve quality of life even more. […] In the modern era, scheduled delayed closure for patients has become the new standard of care even for patients who could be candidates for neonatal closure. […] Sufficient bladder growth for continent bladder neck reconstruction occurs in approximately 60% of successfully closed CBE patients. […] If bladder growth does not reach sufficient capacity, a bladder augmentation cystoplasty may be required. […] The paramount goal of surgical management of classic bladder exstrophy is a successful primary closure as it is associated with decreased overall costs, decreased inflammation and fibrosis of the bladder, improved bladder growth, and decreased need for urinary diversion.

• #30 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  The exstrophy-epispadias complex is a rare congenital malformation of the genitourinary system, abdominal wall muscles, and pelvic structures. […] Complex surgery in neonates and young children, as well as a prolonged postoperative course require close collaboration between surgeons, anesthesiologists, intensivists, pediatricians, and an experienced nursing staff. […] A well-established interdisciplinary team consisting of surgeons, anesthesiologists, pediatricians, nutritionists, pharmacologists, nurses, and child life specialists are essential in providing the environment for successful outcomes. […] During this time, pain management, nutritional support, and meticulous nursing care for osteotomy pin sites, surgical drains and stents, and skin integrity become a focus. […] Nursing staff are the frontline providers and essential partners in the team approach required for successful management of bladder exstrophy patients.

• #31 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Experienced staff will know how to care for surgical stents, drains, and pins, assess pain and discomfort, and provide an environment of calm and comfort for patients and parents. […] Clustering essential nursing care and avoiding undue disturbance of the patient is desirable in order to avoid agitation. […] Proper immobilization of the pelvis as described above, along with adequate sedation and pain control, have been shown to decrease the rate of postoperative complications and failure of closure. […] All patients should be maintained on antimicrobial prophylaxis following primary closure. […] It is imperative that the wound remains dry and free from tension. […] In addition to pelvic immobilization, the bladder and kidneys are drained with a suprapubic catheter and ureteral stents for the duration of immobilization to prevent bladder distention, urinary obstruction, or spillage onto the wound.

• #32 What to Expect During Care for Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/centers-programs/bladder-exstrophy-program/your-childs-experience

  Expectant families that come to our hospital for an evaluation after receiving a prenatal diagnosis of a suspected bladder exstrophy/epispadias/cloacal exstrophy will have a series of outpatient appointments that will include: […] Meetings with one of our nurse practitioners and attending urologists who specialize in caring for bladder exstrophy/epispadias/cloacal exstrophy […] Consultations to educate families on every step of their childs path from delivery to their initial stay in our Newborn/Infant Intensive Care Unit (N/IICU) to surgery and postoperative care, as well as lifelong expectations […] An inpatient operation will be scheduled. The ideal of age repair is between 4 weeks and 16 weeks of age. […] After surgery, your child will be in a spica cast. They will stay in the hospital recovering for four to six weeks. Their inpatient care will include:

• #33 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  If healthcare professionals spot bladder exstrophy during pregnancy, plans often are made for surgery right after birth. If the condition is found after a baby is born, the baby receives care in a special hospital unit. The baby may need to be transferred to a center that has experience treating bladder exstrophy. In either situation, healthcare professionals cover the newborn’s bladder with a clear plastic dressing to protect it. […] Standard care after surgery includes: Help staying still, also called immobilization. After surgery, infants need to wear devices that keep their lower legs still during healing. The amount of time a child needs to stay still varies. But usually it’s around 4 to 6 weeks. Pain management. Healthcare professionals can place a thin tube into the spinal canal during surgery to deliver pain medicine directly to the area where it’s needed. This gives babies consistent pain control and lessens the need for more-powerful pain relievers called opioids.

• #34 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  If healthcare professionals spot bladder exstrophy during pregnancy, plans often are made for surgery right after birth. If the condition is found after a baby is born, the baby receives care in a special hospital unit. The baby may need to be transferred to a center that has experience treating bladder exstrophy. In either situation, healthcare professionals cover the newborn’s bladder with a clear plastic dressing to protect it. […] Standard care after surgery includes: Help staying still, also called immobilization. After surgery, infants need to wear devices that keep their lower legs still during healing. The amount of time a child needs to stay still varies. But usually it’s around 4 to 6 weeks. Pain management. Healthcare professionals can place a thin tube into the spinal canal during surgery to deliver pain medicine directly to the area where it’s needed. This gives babies consistent pain control and lessens the need for more-powerful pain relievers called opioids.

• #35 Bladder exstrophy repair Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/surgery/bladder-exstrophy-repair

  After pelvic bone surgery, your child will need to be in a lower body cast or sling for 4 to 6 weeks. This helps the bones heal. […] After the bladder surgery, your child will have a tube that drains the bladder through the abdominal wall (suprapubic catheter). This will be in place for 3 to 4 weeks. […] Your child will also need pain management, wound care, and antibiotics. The provider will teach you about these things before you leave the hospital. […] Due to the high risk for infection, your child will need to have a urinalysis and urine culture at every well-child visit. At the first signs of an illness, these tests may be repeated. Some children take antibiotics on a regular basis to prevent infection. […] Urinary control most often happens after the neck of the bladder is repaired. This surgery is not always successful. The child may need to repeat the surgery later on.

• #36 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Experienced staff will know how to care for surgical stents, drains, and pins, assess pain and discomfort, and provide an environment of calm and comfort for patients and parents. […] Clustering essential nursing care and avoiding undue disturbance of the patient is desirable in order to avoid agitation. […] Proper immobilization of the pelvis as described above, along with adequate sedation and pain control, have been shown to decrease the rate of postoperative complications and failure of closure. […] All patients should be maintained on antimicrobial prophylaxis following primary closure. […] It is imperative that the wound remains dry and free from tension. […] In addition to pelvic immobilization, the bladder and kidneys are drained with a suprapubic catheter and ureteral stents for the duration of immobilization to prevent bladder distention, urinary obstruction, or spillage onto the wound.

• #37 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Experienced staff will know how to care for surgical stents, drains, and pins, assess pain and discomfort, and provide an environment of calm and comfort for patients and parents. […] Clustering essential nursing care and avoiding undue disturbance of the patient is desirable in order to avoid agitation. […] Proper immobilization of the pelvis as described above, along with adequate sedation and pain control, have been shown to decrease the rate of postoperative complications and failure of closure. […] All patients should be maintained on antimicrobial prophylaxis following primary closure. […] It is imperative that the wound remains dry and free from tension. […] In addition to pelvic immobilization, the bladder and kidneys are drained with a suprapubic catheter and ureteral stents for the duration of immobilization to prevent bladder distention, urinary obstruction, or spillage onto the wound.

• #38 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Experienced staff will know how to care for surgical stents, drains, and pins, assess pain and discomfort, and provide an environment of calm and comfort for patients and parents. […] Clustering essential nursing care and avoiding undue disturbance of the patient is desirable in order to avoid agitation. […] Proper immobilization of the pelvis as described above, along with adequate sedation and pain control, have been shown to decrease the rate of postoperative complications and failure of closure. […] All patients should be maintained on antimicrobial prophylaxis following primary closure. […] It is imperative that the wound remains dry and free from tension. […] In addition to pelvic immobilization, the bladder and kidneys are drained with a suprapubic catheter and ureteral stents for the duration of immobilization to prevent bladder distention, urinary obstruction, or spillage onto the wound.

• #39 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Experienced staff will know how to care for surgical stents, drains, and pins, assess pain and discomfort, and provide an environment of calm and comfort for patients and parents. […] Clustering essential nursing care and avoiding undue disturbance of the patient is desirable in order to avoid agitation. […] Proper immobilization of the pelvis as described above, along with adequate sedation and pain control, have been shown to decrease the rate of postoperative complications and failure of closure. […] All patients should be maintained on antimicrobial prophylaxis following primary closure. […] It is imperative that the wound remains dry and free from tension. […] In addition to pelvic immobilization, the bladder and kidneys are drained with a suprapubic catheter and ureteral stents for the duration of immobilization to prevent bladder distention, urinary obstruction, or spillage onto the wound.

• #40

  https://www.mumsnet.com/talk/childrens_health/936592-Bladder-Exstrophy-DD-waiting-for-Kelly-Procedure-any-experience

  I really hope your DD does well with her surgery in the summer. […] I am really interested to find out about the next procedure the Kellys and any info on what we should be doing to prepare her and ourselves for the post operative care ie exercises etc. […] the operation takes around 4 hours and they have to have an epidural in for a couple of days for pain relief, however, my d pulled hers out so had to go on morphine which made her very sick, so i wouldn’t recommend that. […] your child will have a catheter ( which will remain in 2 wks after coming home) 2 stents, removed after 7 days, and a urether stent, which is just to repair things around really. […] one thing i would suggest, make sure the nurses 'flush’ your childs catheter twice a day as one kids bladder exploded due to this not happening. […] after 2 horrendous spasms ( common whilst having a catheter in) i was told by a more experienced nurse, that my d should have been on medicine to prevent it happening. […] is a very long road but needs to be done at the end of the day.

• #41 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Experienced staff will know how to care for surgical stents, drains, and pins, assess pain and discomfort, and provide an environment of calm and comfort for patients and parents. […] Clustering essential nursing care and avoiding undue disturbance of the patient is desirable in order to avoid agitation. […] Proper immobilization of the pelvis as described above, along with adequate sedation and pain control, have been shown to decrease the rate of postoperative complications and failure of closure. […] All patients should be maintained on antimicrobial prophylaxis following primary closure. […] It is imperative that the wound remains dry and free from tension. […] In addition to pelvic immobilization, the bladder and kidneys are drained with a suprapubic catheter and ureteral stents for the duration of immobilization to prevent bladder distention, urinary obstruction, or spillage onto the wound.

• #42 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  Bladder exstrophy is a congenital (present at birth) abnormality of the bladder. It happens when the skin over the lower abdominal wall (bottom part of the tummy) does not form properly, so the bladder is open and exposed on the outside of the abdomen. […] Supportive Nursing care Preoperative period: Protection of bladder area from infections and trauma. Avoid irritating clothing and linen over the exposed bladder Positioning the infant and back or side Humidifying the exposed bladder by covering with wet gauze Maintaining aseptic precautions and general hygiene measures along with other routine care. Preparation of parents and child for planned reconstructive surgery […] Postoperative period: Close monitoring of child condition, vitals signs, features of infection Maintaining intake output. Care of urinary catheter Maintaining urinary catheter position, drainage Maintain aseptic precaution during procedure. Instruct mother for necessary precautions related to urinary catheter dislodgement or leakage, prevention of infections. Necessary information and demonstration to parents regarding home based care

• #43 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  Bladder exstrophy is a congenital (present at birth) abnormality of the bladder. It happens when the skin over the lower abdominal wall (bottom part of the tummy) does not form properly, so the bladder is open and exposed on the outside of the abdomen. […] Supportive Nursing care Preoperative period: Protection of bladder area from infections and trauma. Avoid irritating clothing and linen over the exposed bladder Positioning the infant and back or side Humidifying the exposed bladder by covering with wet gauze Maintaining aseptic precautions and general hygiene measures along with other routine care. Preparation of parents and child for planned reconstructive surgery […] Postoperative period: Close monitoring of child condition, vitals signs, features of infection Maintaining intake output. Care of urinary catheter Maintaining urinary catheter position, drainage Maintain aseptic precaution during procedure. Instruct mother for necessary precautions related to urinary catheter dislodgement or leakage, prevention of infections. Necessary information and demonstration to parents regarding home based care

• #44 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  Bladder exstrophy is a congenital (present at birth) abnormality of the bladder. It happens when the skin over the lower abdominal wall (bottom part of the tummy) does not form properly, so the bladder is open and exposed on the outside of the abdomen. […] Supportive Nursing care Preoperative period: Protection of bladder area from infections and trauma. Avoid irritating clothing and linen over the exposed bladder Positioning the infant and back or side Humidifying the exposed bladder by covering with wet gauze Maintaining aseptic precautions and general hygiene measures along with other routine care. Preparation of parents and child for planned reconstructive surgery […] Postoperative period: Close monitoring of child condition, vitals signs, features of infection Maintaining intake output. Care of urinary catheter Maintaining urinary catheter position, drainage Maintain aseptic precaution during procedure. Instruct mother for necessary precautions related to urinary catheter dislodgement or leakage, prevention of infections. Necessary information and demonstration to parents regarding home based care

• #45 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  Bladder exstrophy is a congenital (present at birth) abnormality of the bladder. It happens when the skin over the lower abdominal wall (bottom part of the tummy) does not form properly, so the bladder is open and exposed on the outside of the abdomen. […] Supportive Nursing care Preoperative period: Protection of bladder area from infections and trauma. Avoid irritating clothing and linen over the exposed bladder Positioning the infant and back or side Humidifying the exposed bladder by covering with wet gauze Maintaining aseptic precautions and general hygiene measures along with other routine care. Preparation of parents and child for planned reconstructive surgery […] Postoperative period: Close monitoring of child condition, vitals signs, features of infection Maintaining intake output. Care of urinary catheter Maintaining urinary catheter position, drainage Maintain aseptic precaution during procedure. Instruct mother for necessary precautions related to urinary catheter dislodgement or leakage, prevention of infections. Necessary information and demonstration to parents regarding home based care

• #46 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  Bladder exstrophy is a congenital (present at birth) abnormality of the bladder. It happens when the skin over the lower abdominal wall (bottom part of the tummy) does not form properly, so the bladder is open and exposed on the outside of the abdomen. […] Supportive Nursing care Preoperative period: Protection of bladder area from infections and trauma. Avoid irritating clothing and linen over the exposed bladder Positioning the infant and back or side Humidifying the exposed bladder by covering with wet gauze Maintaining aseptic precautions and general hygiene measures along with other routine care. Preparation of parents and child for planned reconstructive surgery […] Postoperative period: Close monitoring of child condition, vitals signs, features of infection Maintaining intake output. Care of urinary catheter Maintaining urinary catheter position, drainage Maintain aseptic precaution during procedure. Instruct mother for necessary precautions related to urinary catheter dislodgement or leakage, prevention of infections. Necessary information and demonstration to parents regarding home based care

• #47 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  Bladder exstrophy is a congenital (present at birth) abnormality of the bladder. It happens when the skin over the lower abdominal wall (bottom part of the tummy) does not form properly, so the bladder is open and exposed on the outside of the abdomen. […] Supportive Nursing care Preoperative period: Protection of bladder area from infections and trauma. Avoid irritating clothing and linen over the exposed bladder Positioning the infant and back or side Humidifying the exposed bladder by covering with wet gauze Maintaining aseptic precautions and general hygiene measures along with other routine care. Preparation of parents and child for planned reconstructive surgery […] Postoperative period: Close monitoring of child condition, vitals signs, features of infection Maintaining intake output. Care of urinary catheter Maintaining urinary catheter position, drainage Maintain aseptic precaution during procedure. Instruct mother for necessary precautions related to urinary catheter dislodgement or leakage, prevention of infections. Necessary information and demonstration to parents regarding home based care

• #48 Care of the infant with exstrophy of the bladder – PubMed

  https://pubmed.ncbi.nlm.nih.gov/20737782/

  In summary, there is one major principle in the care of the child with exstrophy of the bladder; it is to prevent infection. It is not the exstrophied bladder but the serious infection that causes most of the related deaths. To prevent infection, the child must be kept clean and dry, have a balanced diet with special attention to vitamin A and proteins, have rest, be protected from trauma, take antibiotics, and have a good mental outlook. Even babies can sense when they are rejected or unloved. Parents must learn to control their emotions, understand and accept the baby, and give him the love and care that he needs and deserves as their own child.

• #49 Bladder exstrophy repair Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/surgery/bladder-exstrophy-repair

  After pelvic bone surgery, your child will need to be in a lower body cast or sling for 4 to 6 weeks. This helps the bones heal. […] After the bladder surgery, your child will have a tube that drains the bladder through the abdominal wall (suprapubic catheter). This will be in place for 3 to 4 weeks. […] Your child will also need pain management, wound care, and antibiotics. The provider will teach you about these things before you leave the hospital. […] Due to the high risk for infection, your child will need to have a urinalysis and urine culture at every well-child visit. At the first signs of an illness, these tests may be repeated. Some children take antibiotics on a regular basis to prevent infection. […] Urinary control most often happens after the neck of the bladder is repaired. This surgery is not always successful. The child may need to repeat the surgery later on.

• #50 Bladder Exstrophy | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/bladder-exstrophy

  Bladder exstrophy can result in challenges related to: […] Treatment for bladder exstrophy begins at birth. Your care team should be readily available to help you in the immediate post-natal period, but it is important to note that there are typically no emergency medical needs right after birth. The primary goal when caring for a child with bladder exstrophy is to: Develop adequate bladder function and promote urinary continence […] After initial treatment for bladder exstrophy, your child will require lifelong follow-up. Care is ongoing and can involve a range of testing to evaluate your child’s growth and development, urinary continence, kidney function, and sexual and reproductive health. […] The experts in our Bladder Exstrophy Program provide exceptional pediatric care. Our team includes physician specialists in urology, nephrology, orthopedic surgery, anesthesiology, radiology, and nuclear medicine, as well as nurses, social workers, and child life specialists who will care and support you and your child at every step, from diagnosis through treatment, and even after your child returns home.

• #51 Bladder Exstrophy – Seattle Children’s

  https://www.seattlechildrens.org/conditions/bladder-exstrophy/

  After doctors make the diagnosis, your child may have surgery to: Bring the pubic bones together in front. Place the bladder into the pelvic cavity. Tighten the muscles where the bladder connects to the urethra to improve control of urine flow. Fix the tube (urethra) that carries urine from the bladder to the outside of the body if it is short and split (epispadias). Close the wall of the belly (abdominal wall). Create an opening from the intestines to outside the belly wall so poop (stool) can come out (the surgery is called a colostomy). […] Your baby will be in the hospital for 7 to 10 days when they have surgery. […] Before your baby leaves the hospital, your child’s nurse will teach you how to care for your baby at home. […] Your child should see their regular doctor (pediatrician) for well-child checkups. Your child may get more UTIs than other children. Their pediatrician can check for and treat any infections.

• #52 Bladder Exstrophy and Epispadias | Riley Children’s Health

  https://www.rileychildrens.org/health-info/bladder-exstrophy

  Once treatment begins, it has four goals: Repair the bladder so it can hold urine, place it inside the pelvis and close the abdominal wall, Repair the urethra (epispadias), Reconstruct functional and cosmetically-acceptable genitalia, and Preserve and facilitate renal function and urinary control. […] Most children with bladder exstrophy will require medications to relax the bladder and help it store larger volumes of urine to improve urinary control and provide a safe environment for the kidneys. […] Some kids never need another procedure after their early treatments, but doctors at Riley at IU Health generally recommend follow-up care at least through the teenage years to keep children healthy and observe any changes that warrant further treatment, such as abnormal development of the pelvis.

• #53 Bladder Exstrophy and Epispadias | Riley Children’s Health

  https://www.rileychildrens.org/health-info/bladder-exstrophy

  Once treatment begins, it has four goals: Repair the bladder so it can hold urine, place it inside the pelvis and close the abdominal wall, Repair the urethra (epispadias), Reconstruct functional and cosmetically-acceptable genitalia, and Preserve and facilitate renal function and urinary control. […] Most children with bladder exstrophy will require medications to relax the bladder and help it store larger volumes of urine to improve urinary control and provide a safe environment for the kidneys. […] Some kids never need another procedure after their early treatments, but doctors at Riley at IU Health generally recommend follow-up care at least through the teenage years to keep children healthy and observe any changes that warrant further treatment, such as abnormal development of the pelvis.

• #54 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. It’s hard for healthcare professionals to predict how successful surgery will be. So you’re facing an unclear future for your child. […] Depending on the surgery’s outcome and the degree of bladder control after surgery, your child may face social challenges. For instance, your child may have trouble with body image. Your child also may be at risk of mental health conditions such as anxiety and depression. A social worker or a mental healthcare professional such as a therapist can offer your child and your family support in facing these challenges.

• #55 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. It’s hard for healthcare professionals to predict how successful surgery will be. So you’re facing an unclear future for your child. […] Depending on the surgery’s outcome and the degree of bladder control after surgery, your child may face social challenges. For instance, your child may have trouble with body image. Your child also may be at risk of mental health conditions such as anxiety and depression. A social worker or a mental healthcare professional such as a therapist can offer your child and your family support in facing these challenges.

• #56 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  If you have bladder exstrophy its important to take your medications as prescribed by your health care provider, even if youre feeling fine. This is because many of the medications prevent problems from happening. […] Many patients with bladder exstrophy have trouble emptying their bladders completely and require help using catheterization. […] It is important to stay on the schedule that your health care provider gives you, even if your bladder doesnt feel full. It is also important to catheterize before the set time if your bladder feels full earlier. […] Following your treatment plan will: Lessen your chances of getting urinary infections and keep your kidneys working well, Prevent unscheduled clinic or ER visits, and overnight hospital stays, Avoid having to take extra medicines, Lower the risk of bladder rupture, Help you feel well so you can participate in fun activities.

• #57 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. It’s hard for healthcare professionals to predict how successful surgery will be. So you’re facing an unclear future for your child. […] Depending on the surgery’s outcome and the degree of bladder control after surgery, your child may face social challenges. For instance, your child may have trouble with body image. Your child also may be at risk of mental health conditions such as anxiety and depression. A social worker or a mental healthcare professional such as a therapist can offer your child and your family support in facing these challenges.

• #58 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  While current techniques achieve reasonable success in preservation of renal function, continence, and cosmesis, there are still discoveries that are needed to improve quality of life even more. […] In the modern era, scheduled delayed closure for patients has become the new standard of care even for patients who could be candidates for neonatal closure. […] Sufficient bladder growth for continent bladder neck reconstruction occurs in approximately 60% of successfully closed CBE patients. […] If bladder growth does not reach sufficient capacity, a bladder augmentation cystoplasty may be required. […] The paramount goal of surgical management of classic bladder exstrophy is a successful primary closure as it is associated with decreased overall costs, decreased inflammation and fibrosis of the bladder, improved bladder growth, and decreased need for urinary diversion.

• #59 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  Starting in the 1990s, interest in combined, all-inclusive repairs of exstrophy were rekindled for older children with failed primary closures and eventually in neonatal primary closures. […] The modern staged approach separates the repair into three stages: (1) Primary closure of bladder and abdominal wall, (2) epispadias repair, (3) continence surgeries. […] The use of pelvic osteotomy and immobilization is not without risk. […] In a recent large, survey-based, study of adult exstrophy patients, 50% of adult exstrophy patients required a bladder augmentation. […] An augmentation cystoplasty is commonly required in CBE patients following failed primary closures and patients with noncompliant and/or insufficient bladder capacity. […] Patients requiring augmentation cystoplasty typically also require concurrent CUD.

• #60 Bladder Exstrophy | Pediatric Urologists | Duke Health

  https://www.dukehealth.org/pediatric-treatments/pediatric-urology/bladder-exstrophy

  All children with bladder exstrophy need lifelong follow-up care to prevent bladder-control problems, urinary tract infections (UTIs), or kidney damage that can be caused by the condition. […] Planning your delivery at Duke University Hospital means you and your baby can both get the care you need from an expert team — labor and delivery specialists, maternal-fetal medicine doctors, pediatric urologists, pediatric orthopaedic surgeons, and specialized nurses who are experienced in treating this rare condition. […] Your newborn will remain in the hospital for up to six weeks after surgery, so its important to have experienced nurses who specialize in caring for newborns with bladder exstrophy.

• #61 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. It’s hard for healthcare professionals to predict how successful surgery will be. So you’re facing an unclear future for your child. […] Depending on the surgery’s outcome and the degree of bladder control after surgery, your child may face social challenges. For instance, your child may have trouble with body image. Your child also may be at risk of mental health conditions such as anxiety and depression. A social worker or a mental healthcare professional such as a therapist can offer your child and your family support in facing these challenges.

• #62 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. It’s hard for healthcare professionals to predict how successful surgery will be. So you’re facing an unclear future for your child. […] Depending on the surgery’s outcome and the degree of bladder control after surgery, your child may face social challenges. For instance, your child may have trouble with body image. Your child also may be at risk of mental health conditions such as anxiety and depression. A social worker or a mental healthcare professional such as a therapist can offer your child and your family support in facing these challenges.

• #63 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  Some healthcare professionals recommend that all children with BEEC receive early counseling. They also recommend that these children and their families keep getting mental health support into adulthood. […] You also may benefit from finding a support group of parents who are dealing with this condition. It can help to talk with others who have had experiences like yours and understand what you’re going through. […] It also may be helpful to keep in mind that children with bladder exstrophy have typical life expectancies. They also have a good chance of living full, productive lives with work, relationships and children of their own. If needed, fertility treatments such as assisted reproductive technology can help them achieve pregnancy.

• #64 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  Some healthcare professionals recommend that all children with BEEC receive early counseling. They also recommend that these children and their families keep getting mental health support into adulthood. […] You also may benefit from finding a support group of parents who are dealing with this condition. It can help to talk with others who have had experiences like yours and understand what you’re going through. […] It also may be helpful to keep in mind that children with bladder exstrophy have typical life expectancies. They also have a good chance of living full, productive lives with work, relationships and children of their own. If needed, fertility treatments such as assisted reproductive technology can help them achieve pregnancy.

• #65 Bladder Exstrophy: Care by Age and Stage | 700 Children’s

  https://www.nationwidechildrens.org/family-resources-education/700childrens/2025/04/bladder-exstrophy-care

  Your care team will arrange a date for your baby to come for the first repair procedure. This is around three months after birth. This is called the initial closure surgery. […] The next step is called the Kelly procedure. This involves rebuilding the soft tissue of the bladder neck. It uses existing muscle and soft tissue to create the new neck of the bladder. […] Follow up around school-age years is important to see how well your child can hold their urine (continence) and if they are potty trained for school. […] As your child grows, ongoing care will help to make sure your childs bladder, kidneys and genitals develop and remain functioning in a healthy way. Many people regain continence after surgery and maintain it throughout their lifetime. […] The best predictor of positive adjustment in kids is a loving and accepting family who can talk openly with them about their condition.

• #66 How Does Bladder Exstrophy Impact Mental Health? | Children’s Hospital Los Angeles

  https://www.chla.org/blog/experts/research-and-breakthroughs/how-does-bladder-exstrophy-impact-mental-health

  Dr. Vasquez, Associate Chief of Urology at CHLA, says the results highlight the need for psychological support for children with bladder exstrophy and related conditions. […] I would encourage other pediatric urologists to refer their patients to a psychologist as part of their care management, Dr. Vasquez says. This is a population of young people who have unique experiences and needs. […] Its critical that patients and families are psychologically ready for this major reconstruction, Dr. Vasquez says. Our goal is to learn from other families experiences to enhance pre-surgical screening for readiness and provide patients with more resources to support their mental health and well-being.

• #67 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Successful primary closure of the bladder is the single most important predictor of long-term bladder growth and voided continence. […] Management of bladder exstrophy, a rare congenital malformation with previously devastating effects on function and quality of life, has significantly changed over the last few decades.

• #68 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  POST OPERATIVE DAY 2 Risk for infection related to surgical incision. […] HEALTH EDUCATION: To keep the bladder area clean and dry. Covering the bladder with sterile petroleum gauze to prevent infection and ulceration of mucosa. Preventing diaper from adhering to the area. Frequently changing the diaper for comfort and to prevent constant bad odour of urine. […] A carefully planned surgical reconstruction for bladder exstrophy can lead to satisfactory long-term urinary continence in most patients. Factors contributing to successful results include early bladder closure, pelvic osteotomy, adequate bladder neck reconstruction with bladder neck suspension in girls, and a motivated child and family. Ultimate predictors of outcome in bladder exstrophy repair are difficult to ascertain.

• #69 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  Some healthcare professionals recommend that all children with BEEC receive early counseling. They also recommend that these children and their families keep getting mental health support into adulthood. […] You also may benefit from finding a support group of parents who are dealing with this condition. It can help to talk with others who have had experiences like yours and understand what you’re going through. […] It also may be helpful to keep in mind that children with bladder exstrophy have typical life expectancies. They also have a good chance of living full, productive lives with work, relationships and children of their own. If needed, fertility treatments such as assisted reproductive technology can help them achieve pregnancy.

• #70 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  Some healthcare professionals recommend that all children with BEEC receive early counseling. They also recommend that these children and their families keep getting mental health support into adulthood. […] You also may benefit from finding a support group of parents who are dealing with this condition. It can help to talk with others who have had experiences like yours and understand what you’re going through. […] It also may be helpful to keep in mind that children with bladder exstrophy have typical life expectancies. They also have a good chance of living full, productive lives with work, relationships and children of their own. If needed, fertility treatments such as assisted reproductive technology can help them achieve pregnancy.

• #71 Bladder Exstrophy: Causes, Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/21806-bladder-exstrophy

  Babies who have bladder exstrophy at birth need surgery. […] Surgery is the only way to treat bladder exstrophy. The type and number of surgeries your baby needs will depend on the severity of their symptoms. Your babys surgeon will explain the best approach for your babys needs. As your child grows, they may need additional surgeries so they can hold their pee until its time to use the bathroom. […] Most babies have good long-term outcomes if they have surgery to treat bladder exstrophy. Most children who receive treatment can run, play or do any other typical activities without problems. […] If your child develops kidney infections or kidney stones, their provider will treat them as necessary.

• #72 Bladder exstrophy in children – Children’s Health Urology

  https://www.childrens.com/specialties-services/conditions/bladder-exstrophy

  Following each surgery, the child will likely remain hospitalized for several weeks. Urine tests will be repeated to monitor the surgery site, bladder and kidneys for any signs of infection. […] Reconstruction done in stages, while a lengthy process, offers a hopeful prognosis for children with bladder exstrophy. About 75% of those treated for this condition will be able to exercise bladder control. The majority of those treated also have normal function of the bladder and sexual organs. […] After treatment, patients treated for bladder exstrophy generally have no lifestyle restrictions and the condition has no effect on life expectancy.

• #73 Bladder exstrophy in children – Children’s Health Urology

  https://www.childrens.com/specialties-services/conditions/bladder-exstrophy

  Following each surgery, the child will likely remain hospitalized for several weeks. Urine tests will be repeated to monitor the surgery site, bladder and kidneys for any signs of infection. […] Reconstruction done in stages, while a lengthy process, offers a hopeful prognosis for children with bladder exstrophy. About 75% of those treated for this condition will be able to exercise bladder control. The majority of those treated also have normal function of the bladder and sexual organs. […] After treatment, patients treated for bladder exstrophy generally have no lifestyle restrictions and the condition has no effect on life expectancy.

• #74 Bladder exstrophy repair Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/surgery/bladder-exstrophy-repair

  After pelvic bone surgery, your child will need to be in a lower body cast or sling for 4 to 6 weeks. This helps the bones heal. […] After the bladder surgery, your child will have a tube that drains the bladder through the abdominal wall (suprapubic catheter). This will be in place for 3 to 4 weeks. […] Your child will also need pain management, wound care, and antibiotics. The provider will teach you about these things before you leave the hospital. […] Due to the high risk for infection, your child will need to have a urinalysis and urine culture at every well-child visit. At the first signs of an illness, these tests may be repeated. Some children take antibiotics on a regular basis to prevent infection. […] Urinary control most often happens after the neck of the bladder is repaired. This surgery is not always successful. The child may need to repeat the surgery later on.

• #75 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  While current techniques achieve reasonable success in preservation of renal function, continence, and cosmesis, there are still discoveries that are needed to improve quality of life even more. […] In the modern era, scheduled delayed closure for patients has become the new standard of care even for patients who could be candidates for neonatal closure. […] Sufficient bladder growth for continent bladder neck reconstruction occurs in approximately 60% of successfully closed CBE patients. […] If bladder growth does not reach sufficient capacity, a bladder augmentation cystoplasty may be required. […] The paramount goal of surgical management of classic bladder exstrophy is a successful primary closure as it is associated with decreased overall costs, decreased inflammation and fibrosis of the bladder, improved bladder growth, and decreased need for urinary diversion.

• #76 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  While current techniques achieve reasonable success in preservation of renal function, continence, and cosmesis, there are still discoveries that are needed to improve quality of life even more. […] In the modern era, scheduled delayed closure for patients has become the new standard of care even for patients who could be candidates for neonatal closure. […] Sufficient bladder growth for continent bladder neck reconstruction occurs in approximately 60% of successfully closed CBE patients. […] If bladder growth does not reach sufficient capacity, a bladder augmentation cystoplasty may be required. […] The paramount goal of surgical management of classic bladder exstrophy is a successful primary closure as it is associated with decreased overall costs, decreased inflammation and fibrosis of the bladder, improved bladder growth, and decreased need for urinary diversion.

• #77 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  If you have bladder exstrophy its important to take your medications as prescribed by your health care provider, even if youre feeling fine. This is because many of the medications prevent problems from happening. […] Many patients with bladder exstrophy have trouble emptying their bladders completely and require help using catheterization. […] It is important to stay on the schedule that your health care provider gives you, even if your bladder doesnt feel full. It is also important to catheterize before the set time if your bladder feels full earlier. […] Following your treatment plan will: Lessen your chances of getting urinary infections and keep your kidneys working well, Prevent unscheduled clinic or ER visits, and overnight hospital stays, Avoid having to take extra medicines, Lower the risk of bladder rupture, Help you feel well so you can participate in fun activities.

• #78 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  If you have bladder exstrophy its important to take your medications as prescribed by your health care provider, even if youre feeling fine. This is because many of the medications prevent problems from happening. […] Many patients with bladder exstrophy have trouble emptying their bladders completely and require help using catheterization. […] It is important to stay on the schedule that your health care provider gives you, even if your bladder doesnt feel full. It is also important to catheterize before the set time if your bladder feels full earlier. […] Following your treatment plan will: Lessen your chances of getting urinary infections and keep your kidneys working well, Prevent unscheduled clinic or ER visits, and overnight hospital stays, Avoid having to take extra medicines, Lower the risk of bladder rupture, Help you feel well so you can participate in fun activities.

• #79 Exstrophy of bladder | PPT

  https://www.slideshare.net/slideshow/exstrophy-of-bladder-in-nursing-studies/248801263

  POST OPERATIVE DAY 2 Risk for infection related to surgical incision. […] HEALTH EDUCATION: To keep the bladder area clean and dry. Covering the bladder with sterile petroleum gauze to prevent infection and ulceration of mucosa. Preventing diaper from adhering to the area. Frequently changing the diaper for comfort and to prevent constant bad odour of urine. […] A carefully planned surgical reconstruction for bladder exstrophy can lead to satisfactory long-term urinary continence in most patients. Factors contributing to successful results include early bladder closure, pelvic osteotomy, adequate bladder neck reconstruction with bladder neck suspension in girls, and a motivated child and family. Ultimate predictors of outcome in bladder exstrophy repair are difficult to ascertain.

• #80 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  Call your health care provider right away if you have any of the following symptoms: Fever greater than 101.5F, You cant empty your bladder by urinating or catheterizing, Severe pain in your abdomen (belly) or back, Nausea or vomiting that doesnt go away, Unable to have a bowel movement (poop) for more than 2 days.

• #81 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  If you have bladder exstrophy its important to take your medications as prescribed by your health care provider, even if youre feeling fine. This is because many of the medications prevent problems from happening. […] Many patients with bladder exstrophy have trouble emptying their bladders completely and require help using catheterization. […] It is important to stay on the schedule that your health care provider gives you, even if your bladder doesnt feel full. It is also important to catheterize before the set time if your bladder feels full earlier. […] Following your treatment plan will: Lessen your chances of getting urinary infections and keep your kidneys working well, Prevent unscheduled clinic or ER visits, and overnight hospital stays, Avoid having to take extra medicines, Lower the risk of bladder rupture, Help you feel well so you can participate in fun activities.

• #82 Bladder Exstrophy | Diagnosis, Treatment & Outlook

  https://www.cincinnatichildrens.org/health/b/bladder-exstrophy

  Bladder exstrophy is treated with surgery by a pediatric urologist. A pediatric orthopedic surgeon will work with the urologist to put the child’s pubic bones in the proper place. […] After surgery, children with bladder exstrophy will require lifelong follow-up care. This helps ensure the best health and quality of life possible. […] Children with bladder exstrophy benefit greatly when they receive ongoing care from a variety of team members. […] The care team will provide a personalized care plan. They will monitor your child throughout childhood and adolescence. Your child will be scheduled for regular follow-up visits and testing to ensure their bladder and kidneys continue to develop in a healthy way. […] It is very common for children with bladder exstrophy to experience emotional issues related to their condition. Parents may struggle with complicated feelings about having a child with this condition. A psychologist can be part of the care team to help your family understand these feelings and deal with them together.

• #83 Bladder Exstrophy | Diagnosis, Treatment & Outlook

  https://www.cincinnatichildrens.org/health/b/bladder-exstrophy

  Bladder exstrophy is treated with surgery by a pediatric urologist. A pediatric orthopedic surgeon will work with the urologist to put the child’s pubic bones in the proper place. […] After surgery, children with bladder exstrophy will require lifelong follow-up care. This helps ensure the best health and quality of life possible. […] Children with bladder exstrophy benefit greatly when they receive ongoing care from a variety of team members. […] The care team will provide a personalized care plan. They will monitor your child throughout childhood and adolescence. Your child will be scheduled for regular follow-up visits and testing to ensure their bladder and kidneys continue to develop in a healthy way. […] It is very common for children with bladder exstrophy to experience emotional issues related to their condition. Parents may struggle with complicated feelings about having a child with this condition. A psychologist can be part of the care team to help your family understand these feelings and deal with them together.

• #84 Bladder Exstrophy | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/bladder-exstrophy

  Bladder exstrophy can result in challenges related to: […] Treatment for bladder exstrophy begins at birth. Your care team should be readily available to help you in the immediate post-natal period, but it is important to note that there are typically no emergency medical needs right after birth. The primary goal when caring for a child with bladder exstrophy is to: Develop adequate bladder function and promote urinary continence […] After initial treatment for bladder exstrophy, your child will require lifelong follow-up. Care is ongoing and can involve a range of testing to evaluate your child’s growth and development, urinary continence, kidney function, and sexual and reproductive health. […] The experts in our Bladder Exstrophy Program provide exceptional pediatric care. Our team includes physician specialists in urology, nephrology, orthopedic surgery, anesthesiology, radiology, and nuclear medicine, as well as nurses, social workers, and child life specialists who will care and support you and your child at every step, from diagnosis through treatment, and even after your child returns home.

• #85 Bladder Exstrophy | Children’s Wisconsin

  https://childrenswi.org/medical-care/urology/conditions/exstrophy-of-the-bladder

  Children’s Wisconsin is a Center of Excellence and member of MIBEC (Multi Institutional Bladder Exstrophy Consortium) for bladder Exstrophy and Epispadias. Our goal is to help your child have good bladder health, bladder control, and lead a normal active life. […] Children’s has been designated a „Center of Excellence” in the treatment of bladder and cloacal exstrophy by the Association for the Bladder Exstrophy Community (A-BE-C). A-BE-C’s Centers of Excellence program is the first to recognize health systems that are meeting the highest standards of treatment for the rare conditions of bladder and cloacal exstrophy, including post-operative and long-term care. […] Your child will be treated by our specialty team consisting of urologists, orthopedic surgeons, anesthesiologists, nurse practitioners, and nurses who have experience with all areas of bladder exstrophy. Typical care begins with a visit to our Urology Program.

• #86 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  Successful primary closure of the bladder is the single most important predictor of long-term bladder growth and voided continence. […] Management of bladder exstrophy, a rare congenital malformation with previously devastating effects on function and quality of life, has significantly changed over the last few decades.

• #87 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  Classic bladder exstrophy is a complex, multi-system congenital malformation affecting formation of the genitourinary system, pelvis, and abdominal wall. […] Modern advancements in the diagnosis and management of this disorder have resulted in low mortality rates and shifted clinical focus toward optimizing quality of life. […] Modern techniques in addition to recent discoveries in the diagnosis and delayed management of this disorder have enabled high rates of urinary continence, genital cosmesis, and an improved quality of life. […] Surgical management of CBE requires multiple reconstructive surgeries starting with closure of the bony pelvis, bladder, and anterior abdominal wall, followed later by epispadias repair. […] Recent trends have shifted management toward scheduled delayed closure in the 6-8th week of life and utilization of pelvic osteotomy and lower extremity immobilization to ensure complete approximation and sufficient deepening of the pelvis for anatomic placement of the bladder.

• #88 Perioperative management of classic bladder exstrophy

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3826855/

  The exstrophy-epispadias complex is a rare congenital malformation of the genitourinary system, abdominal wall muscles, and pelvic structures. […] Complex surgery in neonates and young children, as well as a prolonged postoperative course require close collaboration between surgeons, anesthesiologists, intensivists, pediatricians, and an experienced nursing staff. […] A well-established interdisciplinary team consisting of surgeons, anesthesiologists, pediatricians, nutritionists, pharmacologists, nurses, and child life specialists are essential in providing the environment for successful outcomes. […] During this time, pain management, nutritional support, and meticulous nursing care for osteotomy pin sites, surgical drains and stents, and skin integrity become a focus. […] Nursing staff are the frontline providers and essential partners in the team approach required for successful management of bladder exstrophy patients.

• #89 Pediatric Exstrophy of the Bladder and Epispadias – Conditions and Treatments | Children’s National Hospital

  https://www.childrensnational.org/get-care/health-library/exstrophy-of-the-bladder-and-epispadias

  Exstrophy of the bladder is when a babys bladder has grown inside out and is sticking out through the belly wall. […] Treatment is done with surgery. There are often three stages of surgery to fix the problems. […] Even with surgery, a child may not be able to control his or her urine (urinary incontinence). There may also be long-term damage to the urinary tract and kidneys. […] Treatment is done with surgery and your urologist will discuss the several stages of surgery that might be needed to reconstruct the urinary tract. Surgery may be done in a single operation or in several stages depending on the details of your childs case. […] Bladder exstrophy is one of the most complex conditions that we deal with in the field of pediatric urology. It takes a full team of healthcare professionals to prepare patients and their families for the procedure, ensure patient safety throughout the process, and provide the long-term follow-up care and support needed to help these children thrive. […] Even with surgery, a child may not be able to control his or her urine (urinary incontinence). Newer surgery methods make it possible for most children to control their urine over time. But a child may have long-term damage to the urinary tract and kidneys.

• #90 Bladder exstrophy | Health Library | Memorial Health System

  https://www.mhsystem.org/health-library/con-20339069/

  Standard care after surgery includes help staying still, also called immobilization. After surgery, infants need to wear devices that keep their lower legs still during healing. The amount of time a child needs to stay still varies. But usually its around 4 to 6 weeks. […] Pain management. Healthcare professionals can place a thin tube into the spinal canal during surgery to deliver pain medicine directly to the area where its needed. This gives babies consistent pain control and lessens the need for more-powerful pain relievers called opioids. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. Its hard for healthcare professionals to predict how successful surgery will be. So youre facing an unclear future for your child.

• #91 Bladder exstrophy | Health Library | Memorial Health System

  https://www.mhsystem.org/health-library/con-20339069/

  Standard care after surgery includes help staying still, also called immobilization. After surgery, infants need to wear devices that keep their lower legs still during healing. The amount of time a child needs to stay still varies. But usually its around 4 to 6 weeks. […] Pain management. Healthcare professionals can place a thin tube into the spinal canal during surgery to deliver pain medicine directly to the area where its needed. This gives babies consistent pain control and lessens the need for more-powerful pain relievers called opioids. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. Its hard for healthcare professionals to predict how successful surgery will be. So youre facing an unclear future for your child.

• #92 Care of the infant with exstrophy of the bladder – PubMed

  https://pubmed.ncbi.nlm.nih.gov/20737782/

  In summary, there is one major principle in the care of the child with exstrophy of the bladder; it is to prevent infection. It is not the exstrophied bladder but the serious infection that causes most of the related deaths. To prevent infection, the child must be kept clean and dry, have a balanced diet with special attention to vitamin A and proteins, have rest, be protected from trauma, take antibiotics, and have a good mental outlook. Even babies can sense when they are rejected or unloved. Parents must learn to control their emotions, understand and accept the baby, and give him the love and care that he needs and deserves as their own child.

• #93 Bladder Exstrophy and Epispadias | Riley Children’s Health

  https://www.rileychildrens.org/health-info/bladder-exstrophy

  Once treatment begins, it has four goals: Repair the bladder so it can hold urine, place it inside the pelvis and close the abdominal wall, Repair the urethra (epispadias), Reconstruct functional and cosmetically-acceptable genitalia, and Preserve and facilitate renal function and urinary control. […] Most children with bladder exstrophy will require medications to relax the bladder and help it store larger volumes of urine to improve urinary control and provide a safe environment for the kidneys. […] Some kids never need another procedure after their early treatments, but doctors at Riley at IU Health generally recommend follow-up care at least through the teenage years to keep children healthy and observe any changes that warrant further treatment, such as abnormal development of the pelvis.

• #94 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  If you have bladder exstrophy its important to take your medications as prescribed by your health care provider, even if youre feeling fine. This is because many of the medications prevent problems from happening. […] Many patients with bladder exstrophy have trouble emptying their bladders completely and require help using catheterization. […] It is important to stay on the schedule that your health care provider gives you, even if your bladder doesnt feel full. It is also important to catheterize before the set time if your bladder feels full earlier. […] Following your treatment plan will: Lessen your chances of getting urinary infections and keep your kidneys working well, Prevent unscheduled clinic or ER visits, and overnight hospital stays, Avoid having to take extra medicines, Lower the risk of bladder rupture, Help you feel well so you can participate in fun activities.

• #95 Bladder Exstrophy – Seattle Children’s

  https://www.seattlechildrens.org/conditions/bladder-exstrophy/

  Lifelong follow-up care is important for good urinary health. […] Our method of repairing bladder exstrophy with a single surgery was developed by Dr. Michael Mitchell, former chief of pediatric urology at Seattle Children’s. The procedure is called complete primary repair. […] We perform 1-stage repair when your baby is 3 to 4 months old. […] Each child is different, and children’s needs change as they grow and develop. We tailor treatment to your child, working closely with your family through all stages of life. […] We help your child and your family through the challenges of this condition. You’ll get support from child life specialists, social workers and many others, like lactation consultants to help with breastfeeding/chestfeeding your baby. […] Seattle Children’s leads the way in research to provide evidence-based care.

• #96 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows. […] Having a baby with a rare, serious condition present at birth such as bladder exstrophy can be extremely stressful. It’s hard for healthcare professionals to predict how successful surgery will be. So you’re facing an unclear future for your child. […] Depending on the surgery’s outcome and the degree of bladder control after surgery, your child may face social challenges. For instance, your child may have trouble with body image. Your child also may be at risk of mental health conditions such as anxiety and depression. A social worker or a mental healthcare professional such as a therapist can offer your child and your family support in facing these challenges.

• #97 What to Expect During Care for Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/centers-programs/bladder-exstrophy-program/your-childs-experience

  Expectant families that come to our hospital for an evaluation after receiving a prenatal diagnosis of a suspected bladder exstrophy/epispadias/cloacal exstrophy will have a series of outpatient appointments that will include: […] Meetings with one of our nurse practitioners and attending urologists who specialize in caring for bladder exstrophy/epispadias/cloacal exstrophy […] Consultations to educate families on every step of their childs path from delivery to their initial stay in our Newborn/Infant Intensive Care Unit (N/IICU) to surgery and postoperative care, as well as lifelong expectations […] An inpatient operation will be scheduled. The ideal of age repair is between 4 weeks and 16 weeks of age. […] After surgery, your child will be in a spica cast. They will stay in the hospital recovering for four to six weeks. Their inpatient care will include:

• #98 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  The initial step of the MSRE results in a patient with mid-penile shaft epispadias and incontinence. […] Epispadias repair and penile reconstruction, typically performed between 6 and 10 months of age with MSRE, corrects dorsal chordee, urethral and glandular reconstruction, and penile skin closure. […] Failure can occur during any step of reconstruction manifesting as bladder dehiscence, bladder prolapse, vesicocutaneous fistula, or neourethral stricture and urinary obstruction. […] Failure of bladder neck repair is defined as inability to achieve continence, or a 3-h dry period within 2 years after BNR. […] Concerns regarding sexual function among females with CBE are predominantly three-fold: appearance of external genitalia, adequacy of vaginal opening, and uterine prolapse. […] As survival becomes increasingly universal, health-related quality of life (QoL) is becoming an increasingly important topic and driver of reconstructive techniques.

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