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The University of Chicago Medicine - Comer Children's Hospital

Comprehensive Care for Children with Hydrocephalus and Congenital Anomalies of the Nervous System

Kimi Sorensen with nurse Cynthia LaFond, RN

The University of Chicago Medicine Comer Children's Hospital has established an exceptional program to treat nervous system disorders that may be present at birth, including: hydrocephalus, Chiari malformation, syringomyelia, Spina Bifida, tethered cord syndrome, craniosynostosis, and encephalocele. Here, patients receive comprehensive care from a multidisciplinary team of pediatric neurosurgeons, neurologists, orthopaedic surgeons, urologists, rehabilitation specialists, and experts in human genetics. In addition to providing clinical care, these physicians conduct leading-edge research to discover new diagnosis and treatment options for children with these conditions.


Hydrocephalus -- fluid on the brain -- can occur after premature birth, trauma, infection, or from a congenital anomaly. In infancy, symptoms may include a large, growing head with a noticeably bulging fontanel (soft spot on the top of the skull). Children with hydrocephalus may experience headaches, vomiting, changes in balance or school performance, as well as changes in heart rate or breathing as a result of pressure in the brain.

Physicians at the University of Chicago Medicine Comer Children's Hospital work with each family to design a personalized care plan for children with hydrocephalus. We offer a full range of treatment options, including endoscopic procedures to bypass fluid obstruction, and access to nearly every level of implanted cerebral spinal fluid (CSF) shunting device to drain excess fluid from the brain. In addition, we can fine-tune fluid drainage with programmable valve devices and other shunt components to increase effectiveness and comfort for young patients. Our team also offers non-invasive ways of examining the effectiveness of shunts after they have been implanted -- eliminating the need for other, more painful tests. Our hydrocephalus care is internationally recognized and parents from many countries bring their children to us for expert treatment.

Chiari Malformation

Chiari malformation type 1 (CM1) is a congenital abnormality located where the brain and the spinal cord join together. In CM1, tissue in the lower part of the brain protrudes outside of the head, into the top of the spinal canal. Children with CM1 will usually experience headache or head pain, but also can suffer fatigue, dizziness, muscle weakness, chronic pain, impaired vision, decreased feelings in the hands and feet, as well as cognitive/memory changes and poor school performance.

Treatment of CM1 typically involves decompression surgery to create more space for the brain tissue and cerebrospinal fluid in the back of the skull, and to reestablish normal fluid circulation. As CM1 can affect every aspect of a child's life, we have developed a support network to assist children with Chiari malformation and their families. Many patients travel from across the country and the world to be evaluated, seek expert opinions, and receive the most up-to-date treatments available.


Syringomyelia occurs when fluid builds up within the spinal cord and creates a cyst, known as a syrinx. This condition typically appears: in connection with another congenital anomaly, such as Chiari malformation; with a mass lesion, like a spinal cord tumor; or after trauma to the spinal cord. Most types of syringomyelia are treated primarily with surgery.

Spina Bifida (Myelodysplasia) and Tethered Cord Syndrome

Spina Bifida, the most common spine abnormality present at birth, occurs in several different forms that range from mild to severe. Myelomeningocele -- the most severe form of Spina Bifida -- exists when the spinal cord does not fuse together properly during fetal development. Children born with this type of Spina Bifida undergo surgery shortly after birth and require ongoing care throughout the course of his/her life.

In less severe forms of Spina Bifida, the skin of the spine is closed, but the spinal cord may be tethered to the bottom of the spinal canal. These "tethers" usually are caused by a benign fatty mass (lipomyelomeningocele) in the spine, which can connect to the skin, or by a thickening or loss of elasticity in the Filum Terminale -- the thin and usually elastic cord that connects the bottom of the spinal cord to the bottom of the spine. Symptoms may include: back pain, leg pain, leg weakness, club foot, bladder and bowel problems (including the inability to toilet train), balance difficulties and inability to walk, amongst others.

We offer coordinated, multispecialty inpatient and outpatient care for children and adults with Spina Bifida and tethered cord syndrome. In our outpatient clinics, our team of neurosurgeons, neurologists, pediatricians, urologists, and orthopaedic surgeons monitors each child from his or her first days of life into adulthood. The team provides care for existing Spina Bifida problems and helps children avoid new complications as they grow older.


Craniosynostosis occurs when one or more of the growing surfaces of the skull (skull sutures) close prematurely, thereby affecting normal skull growth as well as skull and brain shape. Treatment generally involves surgery to correct the shape of the skull and to give the brain space to properly grow.

Learn more about craniosynostosis.

Other Congenital Anomalies

Our team of neurologists, neurosurgeons, and members of the human genetics program, evaluates and treats children with a variety of congenital anomalies of the central and peripheral nervous system. Through an interdisciplinary neurogenetics clinic, our team often is able to diagnose rare syndromes and to follow up with appropriate, effective treatment.

Comprehensive and Continuous Care

The University of Chicago Medicine offers continuous care for patients with congenital anomalies of the nervous system. When your child turns 18, he or she can still receive care from our dedicated team of pediatric neurosurgeons and other specialists.

Learn more about our comprehensive care for adults with congenital anomalies of the nervous system.