Congenital Anomalies of the Nervous System
The Margaret Hackett Family Program
The Margaret Hackett Family Program here at the University of Chicago is just one part of the Margaret Hackett Family Center.
The Margaret Hackett Family Program support parents at a time when they need it most.After parents have received the news that their child has a neurologic condition, they really need education what's to be expected, and how can I connect with other families and parents?And how do I find the experts? Where do I find hope? Where do I find comfort? The Margaret Hackett Family Program hopes to deliver all those things to all these families.
When I was 17 years old, I was diagnosed with a syringomyelia, which was a condition that ultimately put me in the wheelchair, that combined with the fact that when I graduated from high school, I still had a lot more work that needed to be done. And I had several more operations. So it really put a halt to everything in my life.
Margaret and her family went to a conference with MRI's in-hand looking for someone to treat Margaret and her complicated health care.That's how they came to know Dr. David Frim.
Her parents were enthusiastically trying to find some doctor or some group of doctors that could help Margaret. One of my friends, a neurosurgeon bumped into Margaret's parents at a convention and said, well, you live in Chicago. Why don't you just go see David Frim? He's there already.
We are the University of Chicago. So much is devoted to moving fields forward. We use our training and intellectual capacity to think of how we can treat and make someone better. The Margaret Hackett Foundation came about because of the Margaret's family who wanted to give them back to all the doctors, and nurses, and other caretakers that had been so close to Margaret and continue to be so.
The Margaret Hackett Family Center is designed to provide hope and resources to patients and families who find themselves in a similar situation as we found ourselves when Margaret was first diagnosed.
It is absolutely our desire to help others on their path under their journey. And it's not just about Margaret or the parents. It really is about the entire family.
Part of the foundation is advocacy, where we partner with organizations, so that children should be able to be as good as they can be.
The support and advocacy achieved through the program is focused on finding the experts and sharing hope and comfort through knowledge and experience and providing answers to both patients and parents.The program can help identify community groups or support groups for their particular neurologic condition.
It's to take care of each one of those children, or their siblings, or their parents.That's really what we're here for.
When nervous system disorders are present at birth, patients seek treatment from pediatric neurosurgeons, pediatric neurologists and pediatric rehabilitation specialists. But when those same conditions appear later in life, patients often don't know where to turn. The neurosurgery program at the University of Chicago Medicine is one of the few programs in the country dedicated to providing comprehensive care for children and adults with congenital anomalies of the central nervous system (CNS).
For more information about CNS congenital anomalies and the Margaret Hackett Family Program call 773-795-0622.
Learn more about the Margaret Hackett Family Program:
Congenital Anomalies We Treat
CNS congenital anomalies are birth defects of the physical structure of the brain or spinal cord that develop in utero, or when a fetus is developing during pregnancy. This blanket term encompasses a broad range of disorders and medical conditions, from minor abnormalities to severe ones. There are other congenital anomalies that impact the growth or development of the central nervous system and are often considered central nervous system diseases. Congenital anomalies we treat are:
In addition, UChicago Medicine is home to nationally known programs for adults with neurofibromatosis and tuberous sclerosis.
A wide range of factors can contribute to CNS congenital anomalies, such as:
- Genetic factors
- Exposure to substances such as alcohol, drugs, medications, environmental toxins or other toxins
- Certain viruses that infect the baby while in the womb
However, in many cases there are no known or identifiable causes.
Symptoms of CNS congenital anomalies will vary depending on the nature and severity of the condition and can be different for everyone.
Some physical challenges can include:
- Loss of strength and movement
- Cognitive weakness
- Stiffness and spasticity
- Progressive loss of bodily functions and autonomic control
- Delayed growth
- Severe pain
At UChicago Medicine, adult patients have access to the same team of experts that treats these conditions in children. As a result, they receive compassionate care from skilled physicians who understand the complexities of congenital anomalies, yet recognize the unique challenges that adult patients can face.
In some cases, surgery may be recommended to:
- Relieve symptoms
- Correct the function and form of the brain and/or the structure of the spine
- Maximize cognitive motor function
- Prevent development or progression of neurological deficits
Our team will evaluate and perform a variety of tests to the find the best treatment option to help patients achieve the best physical and psychological condition possible.
The resources listed below provide additional information about some common congenital anomalies of the nervous system.
For Spina Bifida, Tethered Spinal Cord & Other Congenital Malformations of the Spine:
For Hydrocephalus:
For Chiari Malformation & Syringomyelia:
- American Syringomyelia and Chiari Alliance Project
- Conquer Chiari
- Chiari and Syringomyelia Foundation
The University of Chicago Medicine provides links to other organizations as a service to our site visitors. We are not responsible for information or services provided on other websites.
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To speak to someone directly, please call 1-773-702-2123. If you have symptoms of an urgent nature, please call your doctor or go to the emergency room immediately.
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