The Spina Bifida Program at Children's Hospital of Philadelphia provides comprehensive medical care and long-term follow-up for infants, children and teens with spina bifida. Established in 1964, CHOP’s Spina Bifida Program was the first in the nation dedicated to the multidisciplinary care of patients with spina bifida.
Full Answer
Where can I get care for my child with spina bifida?
Spina bifida care at Mayo Clinic. Mayo Clinic's pediatric experts provide the highest quality care for children with spina bifida and any complications.
What does a physical therapist do for teens with spina bifida?
A physical therapist can work with adolescents and teens to teach them how to exercise their legs to increase strength, flexibility, and movement. Regular physical activity is important for all teens and adolescents, but especially for those with conditions that affect movement, such as spina bifida.
Does Mayo Clinic treat spina bifida?
Mayo Clinic has significant expertise and experience in caring for children and adults who have spina bifida, treating more than 370 people annually. When a spina bifida diagnosis is made before birth, after a comprehensive evaluation, Mayo Clinic experts may offer in utero spina bifida surgery to a pregnant woman.
Where to go for spina bifida surgery in Minnesota?
Spina bifida 1 Spina bifida surgery before birth. When a spina bifida diagnosis is made before birth,... 2 Your Mayo Clinic care team. At Mayo Clinic, you can expect the best care from our multispecialty... 3 Spina Bifida Clinic. At Mayo's campus in Rochester, Minnesota,... 4 Nationally recognized expertise. Mayo Clinic in Rochester, Minn.,...
What are the latest treatment options for spina bifida?
Spina bifida treatment. The two main spina bifida treatment options are fetal surgery during pregnancy or surgery on the baby right after birth.
What is the lifespan of someone with spina bifida?
Generally, medical professionals state that about 90% of patients with SB will live past their third decade of life. However this number has increased over the years because of improvements in medical technology so it has increased the life expectancy of patients born with spina bifida.
What is the most severe form of spina bifida?
Myelomeningocele is the most severe form of spina bifida. A portion of the spinal cord or nerves is exposed in a sac through an opening in the spine that may or may not be covered by the meninges. The opening can be closed by surgeons while the baby is in utero or shortly after the baby is born.
Does spina bifida get worse with age?
Adults who have spina bifida face different problems than do children, including: Normal aging process including loss of muscle strength and flexibility, less physical stamina, and a decrease in sensory abilities tend to decline faster or more sever for adults with SB.
Does spina bifida come from Mom or Dad?
In addition, women who were born with a neural tube defect have a greater chance of giving birth to a child with spina bifida than someone who doesn't have a neural tube defect. However, most babies with spina bifida are born to parents with no known family history of the condition.
Who is the oldest living person with spina bifida?
Oldest person living with Spina Bifida turns 90! Albert De Greve was born with a low lesion Spina Bifida in Zelzate, Belgium on 13 March 1923. During his adult life he worked as a tailor in his family's business, riding his bike to work. Nowadays, Albert lives in a retirement home in Sint-Niklaas (B).
Is spina bifida more common in males or females?
In most populations, spina bifida occurs more often among females than males (19). Differential rates of spontaneous abortion for male and female fetuses may account for the differences in sex-specific prevalence rates for spina bifida and other NTDs (19).
Can spina bifida be corrected with surgery?
Currently, there is no cure for spina bifida, but there are a number of treatments available to help manage the disease and prevent complications. In some cases, if diagnosed before birth, the baby can undergo surgery while still in the womb in an effort to repair or minimize the spinal defect.
Does spina bifida qualify for disability?
If your family has limited income and resources, your child with spina bifida will likely qualify for SSI disability benefits. Spina bifida is a disease that affects children and can be very disabling. If your child has spina bifida, he or she may qualify for SSI disability benefits by applying through Social Security.
Can you live a full life with spina bifida?
"Most do well in school, and many play in sports. Because of today's medicine, about 90% of babies born with Spina Bifida now live to be adults, about 80% have normal intelligence and about 75% play sports and do other fun activities."
Does spina bifida affect intelligence?
Many people with spina bifida and hydrocephalus will have normal intelligence, although some will have learning difficulties, such as: a short attention span. difficulty solving problems. difficulty reading.
Does spina bifida affect height?
The incidence of short stature among children with spina bifida is well documented [1, 2, 3]. The short stature is primarily due to disproportionate short growth of the lower body segments.
Where is Spina Bifida Clinic?
Spina Bifida Clinic. At Mayo's campus in Rochester, Minnesota, the Spina Bifida Clinic coordinates care for children and teenagers with complex conditions of the spine, spinal cord, brain, bowel and bladder. When they reach adulthood, they can transition to a Mayo health care team for adults with spina bifida.
How to repair spina bifida?
First, they close what's called the neural plaque code. Second, they suture the dura mater. Third, they close the skin. Then they close the uterus, replace that into the mother's abdomen and close her incision.
What is the procedure to repair a spina bifida defect?
Finally, the instruments and ports are removed, and the maternal abdomen is closed to complete the procedure. Spina bifida fetoscopic surgery. Fetal surgeons access the uterus through an incision in the mother's abdomen, repair the spina bifida defect and close the opening in the baby's back and the mother's incision.
What is the procedure for Spina Bifida?
Narrator: In utero spina bifida surgery is a complex procedure which requires a team of experts from many Mayo Clinic specialties. Before the operation begins, the mother is put under deep general anesthesia to make sure both she and the baby are asleep.
What is the best pediatric hospital in Minnesota?
Mayo Clinic Children's Center in Rochester is ranked the No. 1 hospital in Minnesota, and the five-state region of Iowa, Minnesota, North Dakota, South Dakota and Wisconsin, according to U.S. News & World Report's 2021-2022 "Best Children's Hospitals" rankings.
How do doctors access the uterus?
Using ultrasound as a guide, surgeons make the first incision to access the uterus. Then in cases where the placenta blocks access to the uterus, the uterus is moved out of the mother's abdomen and turned. Doctors make a one centimeter incision in the uterus and use a special stapler to secure blood flow.
What is Mayo Clinic?
Mayo Clinic specializes in minimally invasive approaches that improve overall outcomes. Using a multidisciplinary approach, experts for both the mother and the child come together. These include experts in in maternal and fetal medicine, obstetricians, cardiologists, neurologists, and others.
Clinics
This listing represents the most up-to-date information we have gathered about clinics in the United States that serve people with Spina Bifida.
States L-P
Monthly Spina Bifida Clinic (Physical Medicine, Orthopedics, Neurosurgery, Urology, Neuropsychology)
What to Expect
A typical visit includes an evaluation by the medical specialists in our multidisciplinary team which includes physicians and advance practice nurses from gastroenterology, orthopedics, developmental behavioral pediatrics, neurosurgery, urology and neuropsychology.
Services Offered
Services offered at our clinic includes spina bifida treatment and treatment options for neural tube defects. Other services we offer include:
Location and Appointments
The Myelo Clinic is located on the main campus of UH Rainbow Babies & Children’s Hospital in Cleveland. To schedule an appointment, please contact our Clinical Care Coordinator at 216-844-8438
How much physical activity should a teenager with spina bifida do?
CDC recommends 60 minutes of physical activity a day. There are many ways for teens and adolescents with spina bifida to be active. For example, they can:
Why is it important to learn about spina bifida?
Safety is important for adolescents and teens with spina bifida. They can be at higher risk for injuries and abuse. As they become more independent, it is important for them to learn how to stay safe and what to do if they feel threatened or have been hurt in any way.
How does spina bifida affect mental health?
Teens and adolescents with spina bifida might feel isolated from others, or have low self-esteem. This can cause them to become depressed.
How do people with spina bifida mature?
As people with spina bifida mature, they will perform more and more activities themselves. Most teens will dress and bathe themselves, manage their bathroom plans, and move about independently in their homes and communities.
Can you walk with Spina Bifida?
People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices. A physical therapist can work with adolescents ...
Can parents talk to each other about spina bifida?
It might be helpful for parents of children with spina bifida to talk with one another. One parent might have learned how to address some of the same concerns another parent has. Often, other parents of children with special needs can give advice about good resources for these children.
Can spina bifida affect sexuality?
Sexual Health and Sexuality. Parents and caregivers of adolescents and teens with spina bifida can encourage them to talk with their healthcare professional about sexuality and sexual functioning, contraceptives, and reproductive concerns. Spina bifida causes nerve damage that can affect sexual functioning.
Shriners Children's provides individualized spina bifida care for children
Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect and can happen anywhere along the spine if the neural tube does not close all the way. When the neural tube doesn’t close all the way, the backbone that protects the spinal cord doesn’t form and close as it should.
Learn about Spina Bifida Treatments and Care
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.
Locations for Spina Bifida care
Shriners Children's provides specialty health care to children around the world. We offer a comprehensive range of treatments, services and support to improve the quality of our patients’ lives and help them reach their full potential.
Comprehensive Care for Spina Bifida
The Spina Bifida Center provides comprehensive care to children, adolescents, and adults living with spina bifida, including myelomeningocele, and other neural tube defects.
Why Choose Us
Multidisciplinary Team of Pediatric Experts: We work with experts from urology, neurosurgery, rehabilitation medicine and orthopaedics. We also have dedicated nurse coordinators, social workers, nutritionists and research coordinators.
Spina Bifida Care at Mayo Clinic
- Your Mayo Clinic care team
At Mayo Clinic, you can expect the best care from our multispecialty team of pediatric experts on spina bifida. Depending on age and individual needs, the team of experts may include pediatric or adult specialists in neurosurgery, neurology, urology, orthopedic surgery, radiology, physical med… - Advanced diagnosis and treatment: Spina bifida surgery before birth
When a spina bifida diagnosis is made before birth, the mother will need a comprehensive evaluation to determine treatment options. Mayo Clinic experts may offer in utero spina bifida surgery. This complex procedure involves a team from several Mayo Clinic specialties, includin…
Expertise and Rankings
- Mayo Clinic is consistently recognized by external organizations for providing outstanding care. These endorsements reinforce our commitment to provide expert, compassionate care to both children and adults.
Locations, Travel and Lodging
- Mayo Clinic has major campuses in Phoenix and Scottsdale, Arizona; Jacksonville, Florida; and Rochester, Minnesota. The Mayo Clinic Health System has dozens of locations in several states. For more information on visiting Mayo Clinic, choose your location below:
Costs and Insurance
- Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people. In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need. Learn more about appointments at Mayo Clinic. Ple…