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Spina Bifida

Spina bifida is a congenital birth defect that occurs when the spine and spinal cord do not form properly. This condition is a type of neural tube defect affecting the structure in a developing embryo that eventually becomes the baby’s brain, spinal cord and the tissue surrounding them. Spina bifida can range from mild to severe depending on the size and location. 

The Pediatric Spina Bifida Program at Yale New Haven Children’s Hospital provides comprehensive, long-term care to infants, children, and young adults with Spina Bifida. Prenatal intervention is also provided through our Fetal Care Center. We are proud to be the first and only in Connecticut to offer in-utero surgical treatment for myelomeningocele, a common form of spina bifida. The Spina Bifida Program brings together expert pediatric specialists from neurology, neurodevelopment, orthopedics, urology, nursing, physical therapy and social work to provide children with spina bifida and hydrocephalus coordinated care. 

Symptoms

Signs and symptoms of spina bifida vary by type and each individual. In spina bifida, skin marks observed in an MRI or ultrasound can be signs of the condition. In myelomeningocele, tissues and nerves are usually exposed and the spinal canal remains open along the baby’s lower to middle back.

Services Provided:

  • Nutritional evaluation and support
  • Surgical evaluation (fetal surgery or pediatric surgery)
  • Neurologic evaluation
  • Orthopedic evaluation 
  • Physical therapy (rehabilitation and recovery support, evaluation of bracing and ambulatory aids
  • Radiology and sonography testing 
  • Social work 
  • Transitional program for young adults
  • Urodynamic testing (measures how well your bladder and urethra function)

Urological Care for Spina Bifida

Pediatric urologists treat patients who have concerns with their bladders (neurogenic bladder) related to birth defects affecting the spine, spinal cord or nerve roots. 

The team’s goal is to preserve the bladder by managing symptoms with medication and other means to prevent the need for surgery in later years. Our pediatric urology team is actively involved in research and developing international recommendations for the treatment and maintenance of care for those with Spina Bifida. This provides our patients with access to the latest advancements in care, cutting-edge therapies, including clinical trials of new medications and treatments. Their research has led to improved outcomes and evaluation of patients at greatest risk for failing renal function in the future. 

Prenatal Care of Spina Bifida

Our Fetal Care Center specialists are experts in treating multiple types of spina bifida, including myelomeningocele, the most severe type. In this type, the spinal canal is open along multiple vertebrae in the lower or middle back. The membranes and spinal nerves push through this opening at birth, which forms a fluid-filled sac on the baby’s back. This creates risk to the baby for life-threatening infections and can cause paralysis and bladder and bowel dysfunction if not treated properly.

Prenatal Diagnosis

We offer prenatal screening tests to check for spina bifida and other birth defects. 

  • Blood tests: A maternal serum alpha-fetal (MSAFP) blood test checks for the alpha-fetoprotein that the baby produces. If the test detects abnormally high levels of AFP, a follow-up blood test can confirm if there is a neural tube defect.
  • Ultrasound: Fetal ultrasound in the first trimester and second trimester, which is the most accurate in detecting spina bifida 
  • Amniocentesis: Amniocentesis can confirm the diagnosis of spina bifida. During this procedure, the doctor uses a needle to remove a small sample of amniotic sac fluid that surrounds the baby.

Prenatal Treatment

Prenatal Treatment

Treatment for spina bifida depends on the type and severity of the condition. Fetal surgery for spina bifida usually occurs in the 26th week of pregnancy. Our team of specialists perform a comprehensive evaluation to determine if fetal surgery is feasible. Myelomeningocele may involve surgery prior to or right after birth to repair the opening in the spine or to treat other complications that can occur. 

After birth, children with spina bifida often require care from multiple specialties such as neurology, physical therapy and orthopedics. Our Fetal Care Center helps ensure a seamless transition to specialists within Yale New Haven Children’s Hospital to monitor and treat your child with routine follow-up care.

Postnatal Treatment

If patients are not eligible for fetal surgery or decide it is not the best option for them, surgical repair takes place after the baby is born. Our expert team of surgeons operate on the baby within a few days after birth to close the opening in the spine to prevent infection and prevent further injury to the spinal cord and nerves. 

Follow-up Care

A baby’s prognosis after surgical repair depends on many factors, including the location of their spinal defect. Some children may require minimal ongoing care, while others may require medical and educational support for many years after birth. 

The Neonatal Intensive Care Unit GRAD Program (Great Results After Discharge) is a family-centered, comprehensive multidisciplinary medical and neurodevelopmental follow-up program designed specifically for infants at risk for medical and/or developmental difficulties.

Our team, led by neonatologists, will work with you to support your child’s care after discharge, screen for potential problems, help coordinate outpatient services, as well as monitor the child’s growth and development over time.