Materiały źródłowe

• #1 Spina bifida – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/spina-bifida/diagnosis-treatment/drc-20377865

  Spina bifida treatment depends on how serious the condition is in your baby. Spina bifida occulta often doesn’t need any treatment at all, but other types of spina bifida do. […] Prenatal surgery for spina bifida, also known as fetal surgery, takes place before the 26th week of pregnancy. […] Research suggests that children with spina bifida who have fetal surgery may have less disability and be less likely to need crutches or other walking devices. […] Myelomeningocele requires surgery to close the opening in the baby’s back within 72 hours of birth. Early surgery can help lower the risk of infection associated with the exposed nerves. […] In babies with myelomeningocele, nerve damage that can’t be repaired has likely already occurred in the uterus. Ongoing care from a multispecialty team of surgeons, physicians and therapists usually is needed.

• #1 Spina bifida – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/spina-bifida/diagnosis-treatment/drc-20377865

  Treatment options may include: […] Some babies may start exercises to prepare their legs for walking with braces or crutches when the babies are older. […] Routine bowel and bladder evaluations and management help reduce the risk of organ damage and illness. […] Most babies with myelomeningocele need surgery to place a tube that allows fluid in the brain to drain into another part of the body. […] Special equipment such as bath chairs, commode chairs and standing frames may help with daily functioning. Most spina bifida complications can be treated or managed to improve quality of life. […] Children with spina bifida need close follow-up care and observation. Their healthcare professionals evaluate their growth, the need for vaccinations and general medical issues.

• #2 Spina Bifida: Types, Tests, Treatment & Prevention

  https://my.clevelandclinic.org/health/diseases/8719-spina-bifida

  Because it involves nerve damage, more serious types of spina bifida cannot be cured. Children with more severe cases of spina bifida need to learn mobility skills and need training to learn to manage their bowel and bladder functions. Some may require catheterization to permit the passage of urine. These children also require multiple surgeries as they grow up and will need assistive devices such as braces, crutches and wheelchairs throughout their lives. […] Surgery, physiotherapy and medication are used to treat some of the effects of spina bifida and may be needed throughout a patient’s life to prevent and manage certain complications.

• #3 Spina bifida causes, symptoms and treatment | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/spina-bifida

  Surgery after birth used to be the only option for spina bifida treatment, after damage from continuous exposure to amniotic fluid was already made. Now, performing surgery on the fetus before they are born is another option that has been proven to prevent further damage and improve outcomes. […] The main spina bifida treatment options include: Open fetal surgery during pregnancy, Fetoscopic (minimally invasive) fetal surgery during pregnancy, Postnatal repair or waiting until after the baby is born to repair the spina bifida defect with surgery soon after birth. […] Prenatal repair also requires a significant commitment on the part of the mother and her support person. […] Our team helps each family fully understand the benefits and risks of spina bifida treatment so they can make the best decision for their unique situation.

• #4 Spina Bifida | Brown University Health

  https://www.brownhealth.org/centers-services/fetal-treatment-program-new-england/conditions-we-treat/spina-bifida

  Fetal surgery to treat spina bifida was not available until recently and our program is the first in the region to offer it. In 2011, a study published in the New England Journal of Medicine showed that in most cases, fetal surgery was able to stop CSF from leaking and correct the Chiari-II malformation. The percentage of affected toddlers walking without assistance at age two and a half was 42 percent when treated with fetal surgery, compared with 21 percent for those treated after birth. The study also showed that fetal surgery reduces the chances of requiring a shunt to correct hydrocephalus. […] While the mother is under general anesthesia, an incision is made through the abdominal wall and uterus, exposing the fetus and revealing the spina bifida. The opening in the spine is closed using microsurgical techniques and the fetus is returned to the uterus for the remainder of the pregnancy.

• #5 Spina bifida – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/spina-bifida/care-at-mayo-clinic/mac-20377871

  Mayo Clinic’s pediatric experts provide the highest quality care for children with spina bifida and any complications. […] Mayo Clinic has significant expertise and experience in caring for children and adults who have spina bifida, treating around 300 people every year. […] When a spina bifida diagnosis is made before birth, pregnant people need comprehensive evaluations to determine treatment options. Mayo Clinic experts may offer in utero spina bifida surgery. […] When done by the experienced specialists at Mayo Clinic, prenatal surgery typically results in significantly less disability for the child with spina bifida. […] Through new innovations, Mayo Clinic surgeons are repairing spina bifida prior to birth with the use of a fetoscope. […] Surgery prior to birth can often be offered for serious congenital anomalies such as spina bifida.

• #6 Spina Bifida: Diagnosis & Treatment | NewYork-Presbyterian

  https://www.nyp.org/pediatrics/neurology-and-neurosurgery/spina-bifida/treatment

  Treatment for spina bifida depends on the type and severity of the condition. Spina bifida differs according to the size and location of the spinal defect and whether the spine is open or closed. […] Nerve damage is common in babies born with spina bifida unless immediate treatment is administered at birth. There are two main options: fetal surgery during pregnancy or immediate surgery on the infant at birth. […] Prenatal surgery has proven to be a viable option for some patients. Prenatal surgery is performed before the 26th week of pregnancy. Surgeons will either surgically repair the baby’s spinal cord through the mother’s uterus or use a fetoscope inserted into the uterus, a less invasive surgery. Children who receive fetal surgery for their spina bifida have less mobility complications and less dependency on mobility aids such as crutches or walkers. Prenatal surgery has been shown to reduce the incidence of hydrocephalus.

• #6 Spina Bifida: Diagnosis & Treatment | NewYork-Presbyterian

  https://www.nyp.org/pediatrics/neurology-and-neurosurgery/spina-bifida/treatment

  Babies born with myelomeningocele require surgery within the first 72 hours of their lives; the spinal cord and exposed nerves need to be protected from trauma and infection. The surgery involves a pediatric neurosurgeon placing the spinal cord and exposed nerves and tissues inside the infant’s body covering them with muscle and skin for protection. […] Children affected with spina bifida will require treatment throughout their lives. Common medications prescribed to treat the symptoms of spina bifida may include: Medications to treat bladder and bowel dysfunction caused by neurologic damage, Seizure medications, Antibiotics to treat kidney and bladder infections, Analgesics for pain relief, Antidepressants to treat depression and anxiety. […] Some or all of these may be necessary to improve the quality of life for people with spina bifida.

• #7 Spina Bifida – AANS

  https://www.aans.org/patients/conditions-treatments/spina-bifida/

  Women of childbearing age can reduce their risk of having a child with spina bifida by taking 400 micrograms (mcg) of folic acid every day pre-conception. Because it is water soluble, folic acid does not stay in the body for very long and needs to be taken every day to be effective against neural defects. Since half of all pregnancies in the United States are unplanned, folic acid must be taken whether a woman is planning a pregnancy or not. Research has shown that if all women of childbearing age took a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70%. […] A randomized study (MOMS Trial) compared repair of the defect while the fetus was still in the uterus versus repair after birth and had encouraging, but mixed, results. Patients who underwent fetal repair were both less likely to need a ventriculo-peritoneal shunt (44 vs. 84%) and more likely to be able to walk (44 vs. 24%). The fetal surgery group also had many more maternal and infant complications. Given the higher risk of complications as well as the lack of long-term follow-up, the current recommendation of the American College of Obstetricians and Gynecologists (ACOG) is that fetal surgery only be considered at specialty centers with teams experienced in fetal surgery.

• #8 Spina Bifida, Myelomeningocele | Fetal Care and Treatment Center | UC Davis Children’s Hospital

  https://health.ucdavis.edu/children/services/fetal-care-treatment-center/conditions-we-treat/spina-bifida

  For many decades, infants with myelomeningocele routinely had surgery shortly after birth, protecting the spinal cord by closing the normal tissues of the back. […] Today, fetal surgery is an option for some cases of myelomeningocele. The procedure involves opening the mother’s abdomen and uterus to allow access to the fetus. Surgeons can then close the neural tube and other layers of the fetus back. Although it cannot restore already lost neurological function, the procedure may prevent additional loss from occurring during the remainder of the pregnancy. […] Fetal surgery for spina bifida was studied in the Management of Myelomeningocele Study, or MOMS. That research showed that surgery prior to birth reduced the need for ventriculo-peritoneal shunting, or a V-P shunt, and somewhat reduced the need for walking support later in life. In addition, it reduced the severity of changes in the shape of the head, called Arnold-Chiari malformation type II. Led by Diana Farmer, M.D., chair of the UC Davis Department of Surgery, MOMS is the reason why fetal surgery is offered for spina bifida.

• #9

  https://www.nhs.uk/conditions/spina-bifida/treatment/

  If your child is diagnosed with spina bifida, they’ll be referred to a specialist team who will be involved in their care. […] There are several different treatments for the various problems spina bifida can cause. […] In babies with spina bifida, nerves and membranes can push out of an opening in the spine and form a sac. This damages the nerves and can lead to serious infections, so your baby will usually have surgery to repair the spine within 48 hours of birth. […] Although this will repair the defect, unfortunately it cannot reverse any nerve damage. […] Surgery is usually needed if your child has hydrocephalus (excess fluid on the brain). The surgeon will implant a thin tube called a shunt to drain away excess fluid to another part of the body, usually the tummy. […] Physiotherapy is an important way of helping someone with spina bifida to become as independent as possible. The main aim is to help with movement, prevent deformity, and stop the leg muscles weakening further.

• #9

  https://www.nhs.uk/conditions/spina-bifida/treatment/

  Occupational therapy can help people find ways to carry out everyday activities and become more independent. […] Further corrective surgery may be needed if there are problems with bone development, such as hip dislocation or club foot (a deformity of the foot and ankle). […] Many people with spina bifida have problems controlling their bladder. […] Treatments for bladder problems include: antibiotics lifelong antibiotics are sometimes needed to help prevent kidney and urinary infections, medicines that help relax the bladder so it can store more pee, urinary catheterisation an intermittent urinary catheter is usually needed to drain pee from the bladder several times a day to help prevent infection, bladder surgery may involve enlarging the bladder so it can hold more pee, or connecting the appendix to the bladder and making an opening in the belly so that a catheter can be used more easily.

• #9

  https://www.nhs.uk/conditions/spina-bifida/treatment/

  Bowel problems, particularly constipation, are often a problem for people with spina bifida. […] Treatments for bowel problems include: laxatives a type of medicine to help empty the bowels, suppositories and enemas medicines put into the bottom to help stimulate the bowels and relieve constipation, anal irrigation where using special equipment, you pump water through a tube into your bottom to clean out your bowels; this can be done at home once you’ve been trained in using the equipment, antegrade continence enema (ACE) an operation to create a channel between the bowel and a small opening (stoma) on the surface of the tummy; this means liquids can be passed through the opening in the tummy to flush stools out of the bottom, colostomy surgery to divert one end of the large bowel through an opening in the tummy; a pouch is placed over the opening to collect stools; a colostomy may be recommended if other treatments do not work.

• #10 Spina Bifida/Myelomeningocele | Conditions and Treatments | Division of Pediatric Surgery | Columbia University Department of Surgery

  https://columbiasurgery.org/conditions-and-treatments/spina-bifida-myelomeningocele

  There is no treatment that can cure spina bifida. Damaged nerves and spinal cord cannot be repaired or replaced. Because of this, current treatment focuses on minimizing further damage and managing complications. […] The most severe types of spina bifida (i.e., meningocele and myelomeningocele) can be treated with surgery while the baby is still in the womb (also known as fetal surgery). During this procedure, surgeons open up the mothers abdomen and uterus, then sew shut the abnormal opening in the babys developing spinal cord. This can help reduce the chance of the baby developing disabilities, as well as hydrocephalus. However, this type of surgery also comes with significant risks, such as premature birth. […] If surgery before birth is not possible, it can also be done in the first few days after birth. During this procedure, a surgeon will move the exposed spinal cord and tissue back inside the infants body, then cover it up with muscle and skin. They may also place a shunt in the brain in order to minimize the effects of hydrocephalus.

• #10 Spina Bifida/Myelomeningocele | Conditions and Treatments | Division of Pediatric Surgery | Columbia University Department of Surgery

  https://columbiasurgery.org/conditions-and-treatments/spina-bifida-myelomeningocele

  Babies with myelomeningocele will likely require a variety of treatments throughout their lives in order to manage the complications of their condition. These may include the following: […] Medications, catheters, suppositories, and surgery, are often necessary to manage bowel and bladder issues that accompany spina bifida. […] Ongoing physical therapy, in addition to aids such as crutches, walkers, and wheelchairs, will help children with spina bifida remain independent. […] Ventricular shunts are tubes that can drain excess fluid from the brain into the abdomen. This can help control hydrocephalus.

• #11 Spina Bifida Treatment & Management: Approach Considerations, Bladder Management, Bowel Management

  https://emedicine.medscape.com/article/311113-treatment

  Closure of the myelomeningocele is performed immediately after birth if external cerebrospinal fluid (CSF) leakage is present. […] Although in a few cases hydrocephalus arrests spontaneously, 80-90% of children with myelomeningocele ultimately require shunting. Ventriculoperitoneal shunting is the preferred modality. […] The Chiari II malformation results in problems severe enough to warrant surgical intervention in approximately 15-35% of patients with myelomeningocele. […] Musculoskeletal problems in myelomeningocele can be congenital or acquired and often require orthopedic intervention. Orthopedic surgeries are directed toward functional improvement as opposed to correction of radiologic findings. […] Patients who are born with a sac containing neural elements of the spine require neurosurgical closure of the defect in the neonatal period. They should be referred to an interdisciplinary clinic that includes the services of an orthopedic surgeon.

• #11 Spina Bifida Treatment & Management: Approach Considerations, Bladder Management, Bowel Management

  https://emedicine.medscape.com/article/311113-treatment

  Considerable attention may be needed to prevent the „outhouse syndrome,” in which the patient’s physical problems give rise to social consequences because of a failure to comply with an appropriate bowel regimen. Clean intermittent catheterization has been a very helpful adjunct to the preservation of urinary function. […] In addition to physical therapy, rehabilitation for spina bifida includes occupational and recreational therapy; speech therapy may be indicated for patients with speech and/or swallowing difficulties. […] Physical therapy programs are designed to parallel the normal achievement of gross motor milestones. Occupational therapy should be initiated early to compensate for motor skill deficits and should progress along the normal developmental sequence. Recreational therapy is helpful for promoting independence by enhancing play and recreational opportunities.

• #11 Spina Bifida Treatment & Management: Approach Considerations, Bladder Management, Bowel Management

  https://emedicine.medscape.com/article/311113-treatment

  Treatment strategies are designed to prevent deterioration of renal function and to establish infection-free social continence. These goals can be accomplished by several different methods of bladder drainage, including intermittent catheterization, vesicostomy, and placement of indwelling catheters. […] Clean intermittent catheterization on a regular schedule is preferred to the use of long-term indwelling catheters, as it keeps children drier, less prone to infection, and in better control of urinary function. […] Assisted bowel programs designed to empty the bowels regularly can establish social continence and prevent constipation. Patients are guided to develop a regimen for bowel movements, usually on a daily or every-other-day basis. […] There are also surgical options to assist with the bowel routine. One of these is the antegrade continence enema (ACE) procedure, also known as the Malone ACE (MACE) procedure, after Padraig Malone, who popularized the technique.

• #11 Spina Bifida Treatment & Management: Approach Considerations, Bladder Management, Bowel Management

  https://emedicine.medscape.com/article/311113-treatment

  In the United States, antibiotics, sac closure, and ventriculoperitoneal shunt placement are the standard of care for spina bifida and are implemented in the perinatal period in 93-95% of patients. Supportive care alone may be recommended in cases associated with an irreparable sac, active gross CNS infection or bleeding, and/or other gross congenital organ anomalies causing life-threatening problems. […] Patients with spina bifida require extensive, active, interdisciplinary treatment by a trained and coordinated team. Neonatal neurosurgery is followed by monitoring of head size and condition for potential hydrocephalus, evaluation of sphincters, and progression toward an appropriate bowel and bladder regimen. […] Early monitoring of motor function in the lower extremities also is necessary. Such monitoring should later consist of serial orthopedic examination, including muscle strength and joint range-of-motion (ROM) assessment, to detect any early changes that may require intervention. In addition, patients should be monitored for appropriate development and be provided with prolonged physical therapy, gym resources, and adaptive training while in school. Subsequent efforts are necessary to encourage, develop, and maintain independence.

• #11 Spina Bifida Treatment & Management: Approach Considerations, Bladder Management, Bowel Management

  https://emedicine.medscape.com/article/311113-treatment

  Children with myelomeningocele should be scheduled for regular follow-up visits in the multidisciplinary clinic every 6 months throughout childhood and annually thereafter. […] Since the late 20th century, the incidence of myelomeningocele has undergone a significant reduction in the United States and worldwide. This decline is related to the increasing availability and accuracy of prenatal diagnosis, along with the option for early pregnancy termination and the introduction of primary prevention in the form of folic acid therapy in the periconceptual phase.

• #12 What are the treatments for spina bifida & related conditions? | NICHD – Eunice Kennedy Shriver National Institute of Child Health and Human Development

  http://www.nichd.nih.gov/health/topics/spinabifida/conditioninfo/treatment

  An infant with open spina bifida (myelomeningocele), in which the spinal cord is exposed, can have surgery to close the hole in the back before birth or within the first few days after birth. […] If an infant with spina bifida has hydrocephalus (water on the brain), a surgeon can implant a shunt a small hollow tube to drain the extra fluid and relieve pressure on the brain. The shunt may need to be replaced during childhood. […] For a child with this condition, in which the spinal cord is attached to the spinal canal and stretches as the child grows, surgery can separate the spinal cord from surrounding tissue, allowing the child to regain his or her usual level of functioning. […] Medications, injections, and surgery can also help address incontinence issues and preserve kidney and bladder function for the long term. Children with spina bifida should see a urologist (a doctor who specializes in urinary tract problems) regularly.

• #13 Spina Bifida – UF Health

  https://ufhealth.org/conditions-and-treatments/spina-bifida-resources

  This minimally invasive technique combines endoscopic third ventriculostomy, or ETV, with choroid plexus cauterization, or CPC. The procedure is called ETV-CPC. […] During the ETV-CPC procedure, one of our neurosurgeons will create an opening in the third ventricular floor to allow cerebrospinal fluid, or CSF, to pass from the inside to the outside of the brain. […] In eligible patients, ETV-CPC can have a 50 to 70 percent success rate in preventing the need for shunt placement. If the ETV-CPC procedure treats the hydrocephalus successfully for six months, it is likely to treat it in the long term. […] The dedicated spina bifida team at UF Health Shands Childrens Hospital is here to help and answer any questions a family may have about the best treatment plan for their child. Pediatric specialists from neurosurgery, urology, orthopedic surgery, plastic surgery, gastroenterology, physical/occupational therapy, neuropsychology and social work all work together to optimize the care of every child with spina bifida. […] At UF Health Shands Childrens Hospital, every child diagnosed with a condition requiring neurosurgical expertise is cared for with an individualized treatment plan.

• #14 Spina Bifida Occulta Diagnosis & Treatment – NYC | Columbia Neurosurgery in New York City

  https://www.neurosurgery.columbia.edu/patient-care/conditions/spina-bifida-occulta

  When spina bifida occulta causes no symptoms, it requires no treatment. […] When it causes tethered cord, surgery to release the tether is sometimes recommended. […] In general, for any type of tether surgery, the bones of the spinal column are opened from behind to expose the full extent of the spinal cord tethering. Our doctors often work collaboratively with neurophysiologists to monitor spinal cord and nerve function during the delicate operations. This careful monitoring can help minimize risk to the spinal cord, nerves, and nerve roots. […] The great majority of patients do well with surgery. Most stabilize or even improve their level of function. The spinal cord does have the potential to re-tether after surgery, though. For this reason, follow-up care is important after tethered cord surgery.

• #15 Spina Bifida: Causes, Symptoms, Diagnoses, and Treatment

  https://www.webmd.com/parenting/baby/spina-bifida

  Some babies with spina bifida will start special exercises early in life to prepare their legs for walking with braces or crutches. Others will eventually use walkers or wheelchairs. […] Children with spina bifida may be monitored and treated, as needed, for various complications, including problems with their bladders and bowels. For example, some will need catheters to pee, and some will need regular enemas, suppositories, or medicines they take by mouth to poop regularly. Sometimes, surgery is needed to manage such issues. […] Later surgeries may be needed to correct problems with feet, hips, or the spine or to replace the shunt in the brain. Surgery may also be needed to fix something called progressive tethering, which is when the spinal cord gets fastened to the spinal canal, instead of floating freely, as it usually does. This happens in some children with myelomeningocele. As the child grows, the tethered spinal cord can stretch, causing a loss of muscle and bowel or bladder problems if it’s not corrected.

• #16 Orthopedics Guideline – Spina Bifida Associationheaderheader-color

  https://www.spinabifidaassociation.org/resource/orthopedics-2/

  Data from computerized gait analysis has helped to focus surgical efforts on deformities now known to negatively influence function including hip and knee contractures, rotational deformities of the tibia and femur, and foot deformities. […] The prevalence of spinal deformities including scoliosis and kyphosis is proportionate to the level of the neurologic lesion. […] Surgical treatment carries high risks including infection, pseudarthrosis, and loss of mobility. […] Nevertheless, patients with early onset scoliosis or gibbus (kyphus) deformity present special challenges due to concerns about pulmonary function. […] A recent study suggests that hip reduction surgery is of questionable benefit in myelomeningocele while computerized gait analysis shows that contracture, not subluxation, has a deleterious effect on ambulation.

• #17 Spina Bifida Medication: Antispasmodic Agents, Urinary, Anticholinergics, Tricyclic Antidepressants, Alpha-Adrenergic Antagonists

  https://emedicine.medscape.com/article/311113-medication

  The medications used most frequently in myelomeningocele are for treatment of neurogenic bladder dysfunction. These medications are employed in conjunction with some form of bladder-emptying technique to prevent upper urinary tract complications and to facilitate social continence. Among the drugs used are the following: […] Anticholinergics are used to suppress detrusor overactivity. […] Tricyclic antidepressants may act through anticholinergic effects. […] Alpha-adrenergic antagonists decrease bladder outlet resistance, increase urinary flow rate, and improve bladder emptying.

• #18 Guide | Physical Therapy Guide to Spina Bifida | Choose PT

  https://www.choosept.com/guide/physical-therapy-guide-spina-bifida

  Spina bifida occurs when an infant’s spinal cord does not develop correctly during prenatal (before birth) development. Roughly 1,500 babies born in the United States are diagnosed with spina bifida each year. Spina bifida may cause both physical and cognitive (learning or thinking) disabilities. […] An infant born with spina bifida will have a team of health care providers to address their needs from birth. Physical therapists play an important role on these teams and in the lives of people with spina bifida. Working with a physical therapist from birth helps children with spina bifida reach developmental milestones and improve how they move. Physical therapists also help to prevent or reduce long-term problems and complications (things that worsen symptoms) of spina bifida. […] A physical therapist is an important partner in the health and well-being of anyone with spina bifida. Physical therapists help children and adults gain and keep mobility through all life stages. Physical therapists also work with various other health care providers to address each person’s unique needs. Treatment priorities will shift from early childhood into adulthood.

• #18 Guide | Physical Therapy Guide to Spina Bifida | Choose PT

  https://www.choosept.com/guide/physical-therapy-guide-spina-bifida

  Physical therapy will include: Exercises. Activities. Recommending any needed supportive equipment. Tracking your child’s progress. […] Physical therapy treatment for children or adults with spina bifida may include: Exercises and activities. Physical therapists use many kinds of exercises and activities to improve physical function. They help children and adults with spina bifida take part in play, school, home, and work activities. […] Physical therapists identify activities to encourage movement and muscle strength to promote lifelong health and wellness.

• #19 Rehabilitation for Spina Bifida in Children | NYU Langone Health

  https://nyulangone.org/conditions/spina-bifida-in-children/treatments/rehabilitation-for-spina-bifida-in-children

  Physical therapy involves exercises and other techniques to improve gait, muscle coordination, and balance. […] Physical therapy may begin when a child is 18 months to 2 years old. […] For children with more severe muscular dysfunction, our doctors may recommend inpatient physical therapy, which is performed while your child is in the hospital. […] Occupational therapists help improve your child’s ability to perform everyday activities. […] Some children with spina bifida may have difficulty forming words and speaking clearly. […] Physical therapists offer a wide range of assistive devices to help children with spina bifida move independently. […] Our therapists work closely with orthopedic doctors to provide the appropriate device for your child, depending on his or her level of mobility. […] Doctors may recommend one orthotic or brace for use during the day, when a child is likely to be more mobile, and a second device, called a positioning device, to wear overnight.

• #20 Pediatric Therapy For Spina Bifida | Little Feet Therapy | Pediatric Occupational & Physical Therapy Clinic

  https://littlefeettherapy.com/pediatric-therapy-for-spina-bifida/

  After, your pediatric physical therapist will create a treatment plan which may include a number of options to help your child. […] 1. A Home Exercise Program […] Home exercises take into account that family members, parents, and other caregivers are all part of your child’s health care team. Your child’s physical therapist will design exercises you can used to continue your child’s care outside of the clinic setting. The goal of these exercises is to improve your child’s ability to fully participate in activities both at home and at school. Your pediatric physical therapist will keep track of your child’s progress and adjust exercises as required. These exercises may include things like: Stretches, Balance and strength exercises, Treadmill training, Gait training. […] 2. Assistive Devices and Other Equipment

• #20 Pediatric Therapy For Spina Bifida | Little Feet Therapy | Pediatric Occupational & Physical Therapy Clinic

  https://littlefeettherapy.com/pediatric-therapy-for-spina-bifida/

  Use of assistive devices can help a child with spina bifida to move around independently and be better able to access their environment. Assistive devices can include: Wheelchairs, Standers, Crutches, Walkers, Braces and orthotics. Your pediatric physical therapist can help fit your child with an assistive device uniquely suited to their needs, and help them learn to use it. […] Occupational Therapy For Kids With Spina Bifida […] In addition to a physical therapist, seeing an occupational therapist can also be helpful for kids with spina bifida. Occupational therapists help with learning to perform the skills and tasks that allow them to participate more fully in day to day life. Some of the tasks an occupational therapist can help your child with include: Improving handwriting, Developing self care skills like getting dressed or brushing their teeth, Improving problem solving skills, Developing fine motor skills, Improving concentration and memory issues, Improving organizational skills. […] Has your child been diagnosed with spina bifida? Physical and occupational therapy treatments can help your child to develop the skills they need to become their best selves.

• #21

  https://www.shrinerschildrens.org/en/pediatric-care/spina-bifida

  Not all people born with this condition have the same needs, so treatment is different for each child. […] Specific treatments and services may vary by location. Please contact a specific location for more information. […] Shriners Children’s understands the complex nature of spina bifida. All patients benefit from the expertise of the entire medical team, which provides multidisciplinary clinics. […] Some of the support services we offer for children with spina bifida: […] Motion analysis is an objective measuring technique that assists the medical team in developing a custom approach to improve the child’s function. […] Orthotics are designed to support alignment of the upper and lower extremities. They can also help with stability while walking. […] Pediatric rehabilitation services: This may include occupational and physical therapy, aqua therapy, speech-language pathology, locomotion/walking therapy using a robotic-assisted treadmill (Lokomat), upper extremity robotic training (ARMEO) and electrical stimulation.

• #22 World’s first stem cell treatment for spina bifida delivered during fetal surgery

  https://health.ucdavis.edu/news/headlines/worlds-first-stem-cell-treatment-for-spina-bifida-delivered-during-fetal-surgery–/2022/10

  Three babies have been born after receiving the worlds first spina bifida treatment combining surgery with stem cells. This was made possible by a landmark clinical trial at UC Davis Health. […] The one-of-a-kind treatment, delivered while a fetus is still developing in the mothers womb, could improve outcomes for children with this birth defect. […] While surgery performed after birth can help reduce some of the effects, surgery before birth can prevent or lessen the severity of the fetuss spinal damage, which worsens over the course of pregnancy. […] Its believed that the stem cells work to repair and restore damaged spinal tissue, beyond what surgery can accomplish alone. […] Preliminary work by Farmer and Wang proved that prenatal surgery combined with human placenta-derived mesenchymal stromal cells, held in place with a biomaterial scaffold to form a patch, helped lambs with spina bifida walk without noticeable disability.

• #23 A Potential Cure for Spina Bifida

  https://www.childrenshospitals.org/news/childrens-hospitals-today/2023/04/a-potential-cure-for-spina-bifida

  A baby with spina bifida receives a one-of-a-kind treatment in utero aimed at preventing paralysis. […] Three babies have been born after receiving the worlds first spina bifida treatment combining surgery with stem cells. […] The one-of-a-kind treatment, delivered while a fetus is still developing in the mothers womb, could improve outcomes for children with this congenital disorder. […] While surgery performed after birth can help reduce some of the effects, surgery before birth can prevent or lessen the severity of the fetuss spinal damage, which worsens over the course of pregnancy. […] Farmer, Wang and their research team have been working on their novel approach using stem cells in fetal surgery for more than 10 years. […] It is believed that the stem cells work to repair and restore damaged spinal tissue, beyond what surgery can accomplish alone.

• #24 Stem Cell Therapy For Spina Bifida

  https://beikecelltherapy.com/treatments/stem-cell-treatment-spina-bifida/

  Improvement rates following stem cell transplantation reach as high as 50%; with dramatic improvement being observed in as high as 22% of the patients. […] Our stem cell therapy program for spina bifida consists of 6 to 8 simple and minimally invasive injections of umbilical cord-derived stem cells. […] At Beike, we use umbilical cord stem cells for spina bifida, both umbilical cord-related mesenchymal/tissue and blood/hematopoietic cell samples donated from healthy mothers after normal birth. […] We generally recommend seeking stem cell therapy early after diagnosis i.e. during infancy. […] However, despite its novelty, stem cell therapy has limited side effects, if used properly, with comparable general side effects to those experienced with regular blood transfusion or foreign organ transplantation. […] Factors that might affect your response to stem cell therapy for Spina Bifida include the dose/number of stem cells, route/method of administration, type of stem cells used, timing of stem cell transplantation, and follow-up time.

• #25 Adult Spina Bifida Clinic – Physical Medicine & Rehabilitation | UPMC

  https://www.upmc.com/services/rehab/physical-medicine-rehab/conditions/spina-bifida

  Our treatment team includes: Physical medicine and rehabilitation physician, Physician assistant, Neuropsychologist, Nurse who specializes in spinal cord conditions, Dietitian, Peer counselor, Personal trainer, Social worker, Clinical/research psychometrician, Orthotist, as needed. […] Our doctors, nurses, and staff understand that mobility is crucial to an independent lifestyle. They work closely with experts at the UPMC Center for Assistive Technology (CAT) to prescribe assistive devices to help you maintain your mobility and independence.

• #26 Spina Bifida Symptoms, Treatment at Gillette Children’s

  https://www.gillettechildrens.org/conditions-care/spina-bifida-symptoms-treatment

  Coordinating medical care, mental health issues, and adjusting to life with a complex condition can be hard on families. Gillette offers a variety of services from social workers, child life specialists, psychologists, neuropsychologists, chaplains, therapeutic recreation specialists, and more. Our transition services also support teens and families in making the transition to adulthood and adult-focused health care. […] For conditions that continue into adulthood like spina bifida, we offer services through the Gillette Adult Services Clinic for older teens and adults. Experts here and at our Adult Inpatient Unit specialize in spina bifida and its age-related effects.

• #27 Services for Adults with Spina Bifida

  https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-spina-bifida-and-related-conditions/services-for-adults

  Our coordinated care helps ensure continued treatment into adulthood. […] As the only spina bifida center in Maryland that treats adults, our medical team offers coordination and continuity of care throughout the lifespan. […] In addition to providing management and care, we can also facilitate access to Kennedy Kriegers comprehensive team of specialists to assist with specific educational, behavioral and other therapy needs. Our interdisciplinary and innovative care for adults is centered around routine monitoring to develop an individualized treatment plan that works best for each patient. […] Spina bifida leads to nerve damage that impacts the coordination of the bowel and bladder. Our physical medicine and rehabilitation physicians, continence nurse practitioner and nursing team are neurogenic bowel specialists who are passionate about helping people reach their goals for bowel control/continence and understand the impact this has on quality of life. This includes medication management, transanal irrigation training (including Peristeen and Navina), and antegrade flushes with Chait tube and ACE irrigation management. […] Spina bifida specialists provide oversight to your rehabilitation needs with a focus on maximizing independence, strength, and mobility.

• #28 Manage Spina Bifida | Spina Bifida | CDC

  https://www.cdc.gov/spina-bifida/treatment/index.html

  Treatments for people with spina bifida will be different for each person and their individual health issues. […] Health issues and treatments for people with spina bifida will be different for each person. Some people have issues that are more severe than other people. Those born with open spina bifida usually have more health issues and need more types of treatments. […] Sometimes when a baby has open spina bifida, or myelomeningocele, doctors will perform surgery to close the spine before birth. This surgery is a major procedure for the mother and the baby and may not be available where you live. […] A tethered spinal cord can be treated with surgery. […] Healthcare providers can help develop a plan for each person. A tube (catheter) inserted in the bladder can help drain urine. In some cases, extra fiber can be added to the diet to keep bowel movements regular. Surgery also might be recommended.

• #29 About Spina Bifida | Spina Bifida | CDC

  https://www.cdc.gov/spina-bifida/about/index.html

  Some scientists think that the impact of spina bifida to the legs, bladder and bowel may begin during pregnancy. Therefore, closing the opening in the back during pregnancy may reduce long-term disability associated with spina bifida. The Management of Myelomeningocele Study (MOMS) Trial looked at infants who had this surgery before 26 weeks of pregnancy. This landmark study found that closing spina bifida during pregnancy can: […] Decrease the risk of death in infancy from spina bifida […] Decrease the need for shunting by the end of the first year of life […] Improve motor function in childhood. […] This treatment does not come without risks, including problems with the placenta and infection. The rate of death in the first year of life ranged from 0-20%, but most reports show rates in the 2-6% range.

• #30 Spina Bifida Clinic | Children’s Hospital New Orleans

  https://www.manningchildrens.org/services/neurosciences/neurosurgery/spina-bifida-clinic/

  Experts agree that multidisciplinary care is the gold standard of medical and rehabilitative care for individuals with spina bifida. […] Evaluation and treatment for patients with spina bifida and secondary conditions is achieved through a working partnership between interdisciplinary team members, the patient and family, and the patients primary care provider. Additionally, treatment plans are shared with the school and community care providers to optimize re-integration. […] Pediatric physiatrists (physical medicine and rehabilitation providers) specialize in the rehabilitation care and medical management of children with congenital spinal disorders like spina bifida. […] The programs main goals are to restore or improve function and maximize quality of life to facilitate school and community re-integration.

• #31

  https://www.nhs.uk/conditions/spina-bifida/

  Most people with spina bifida are able to have surgery to close the opening in the spine. […] Surgery to repair the spine will usually be recommended soon after your baby is born. […] Treatments for the symptoms or conditions associated with spina bifida include: surgery soon after birth to close the opening in the spine and treat hydrocephalus, therapies to help make day-to-day life easier and improve independence, such as physiotherapy and occupational therapy, assistive devices and mobility equipment, such as a wheelchair, or walking aids, treatments for bowel and urinary problems. […] With the right treatment and support, many children with spina bifida survive well into adulthood. […] It can be a challenging condition to live with, but many adults with spina bifida are able to lead independent and fulfilling lives.

• #32

  https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/Spina-Bifida.aspx

  In addition to the care provided by a pediatrician, treatments for spina bifida requires a team of specialists. Team members may include neurosurgeons, orthopedic surgeons, urologists, rehabilitation experts, pediatric neurologists, developmental pediatricians, physical therapists, psychologists and social workers. […] Good medical care can greatly improve the quality of life for children with spina bifida and help them reach their full potential.

• #33 Spina Bifida Treatment for Adults, Salt Lake City, Utah | University of Utah Health

  https://healthcare.utah.edu/neurosciences/neurosurgery/adult-spina-bifida

  University of Utah Health has the only multidisciplinary clinic in the state for adults living with spina bifida. Our team of experts works with you to manage symptoms associated with spina bifida and elevate your quality of life through customized treatment options. […] Our care team will help you design the best treatment plan to meet your needs. […] Early treatment is critical to help improve your quality of life. However, it is never too late to seek care. […] Spina bifida care requires routine monitoring. We recommend a yearly visit or more frequent appointments, as needed. You and your providers will work together to map out the care plan best for you. […] If surgery is the best option for treatment, our surgeons will tailor the operation specific to the cause and area of your tether. […] Your physician will check your symptoms at each visit. […] Physical therapy exercises will help improve your overall mobility, strength, and stability. […] Your treatment team will help carefully prescribe your care to manage symptoms and avoid worsening conditions.

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