Healthcare Resources, Hospitals, and Spina Bifida Clinics
Ann & Robert H. Lurie Children's Hospital of Chicago Spina Bifida Clinic
2515 N. Clark St.
Chicago, IL 60614
Phone: 312-227-5340
Clinic is usually held every Tuesday morning beginning at 9 a.m. They currently serve approximately 20-25 patients per day and provide care for patients ranging from birth to 21 years of age. The clinic has a shuttle that runs to and from the hospital and is located near convenient public transportation. They do accept public aid. A list of other accepted insurance programs can be found on their website at www.luriechildrens.org. Click here for the clinic webpage. To make an appointment call 312-227-5340.
Ann & Robert H. Lurie Children’s Hospital of Chicago Neurointestinal and Motility Program (NIM) provides comprehensive diagnostic evaluation and treatment for patients with complex motility disorders. 1.800.543.7362
Lurie offers a Timeline of Services for Children and Adults with Spina Bifida.
Shriners Children’s Chicago
2211 N. Oak Park Ave.
Chicago, IL 60707
Phone: 773-622-5400, 800-470-0232
The Myelomeningocele Clinic is held on the 1st, 2nd, 4th, and 5th Thursdays of the month beginning at 8:30 A.M. New patients can request an appointment by calling 800-470-0232. Approximately 15 patients are seen in clinic per day ranging in age from infancy to their age limit of 21 years old. The clinic is close to the Metra train as well as the CTA. Children and adolescents receive all services in a family-centered environment. Click here for the clinic webpage.
Shriners Children's also provides outpatient pediatric rehabilitation services. If your child is in need of occupational or physical therapy, or speech language pathology, you can have your provider fax a referral directly to the rehabilitation department at 773-385-5851. Specifically, they are happy to provide expert training for self-catheterization and readiness with their skilled occupational therapists and team. Feel free to inquire about their specialized services at 773-385-5574. Learn more about this location at this link: Shriners Children's Chicago | Children's Hospital (shrinerschildrens.org).
OSF Healthcare Children’s Hospital of Illinois
Spina Bifida Clinic
420 N.E. Glen Oak, Suite 301
Peoria, IL 61603
Phone: 309-624-4064
The Spina Bifida Clinic is held on the second Monday of each month. The clinic is a multi-disciplinary facility, which aids families in meeting the special challenges associated with Spina Bifida. The staff consists of a developmental pediatrician, neurosurgeon, orthopaedist, urologist, neuropsychologist, neurodevelopment/physiatry physicians, and clinic coordinator. They also include representatives from: orthopaedic supplies, physical therapy, dietary, Department of Specialized Care for Children (DSCC), and social services. The Clinic is part of the Pediatric Surgery Center, located in Hillcrest Medical Plaza, 420 N.E. Glen Oak Ave., Ste. 301. For more information or to make an appointment, please contact 309-624-4064.
OSF Illinois Neurological Institute Adult Spina Bifida Clinic
1001 Main Street, Suite 401
Peoria, IL 61603
Phone: 309-624-4064
The clinic is held 4 times/year during months that have a 5th Wednesday at 2:00 pm. Staff include: Neurosurgery, urology, IM/Peds physician, social worker, and clinical coordinator. For more information or to make an appointment, please contact 309-624-4064.
Loyola Medicine
2160 S. First Ave.
Maywood, IL 60153
708-216-3208 - after you select your language, choose option 2 to make a new patient appointment
The Spina Bifida Clinic is open with a full team of specialists available to see you at each appointment. The clinic's multidisciplinary approach provides a comprehensive medical care plan while offering you the convenience of one appointment. You can see orthopedics, physiatry, neurosurgery, urology, podiatry and social work. There are no age limits on this clinic and no need to transition to another program at the age of eighteen. Appointments are available the fourth Wednesday of every month in the Loyola Outpatient Center.
Click here for more info about Loyola Medicine
The University of Chicago Medicine
Margaret Hackett Family Program in CNS Congenital Anomalies
Duchossois Center for Advanced Medicine - Hyde Park
5758 S Maryland Ave
Chicago, IL 60637
The Margaret Hackett Family Program (MHFP) at the University of Chicago is available to assist patients diagnosed with spina bifida in establishing and coordinating their care at UChicago Medicine. The clinics at the University of Chicago Medicine accept both pediatric and adult patients who have been diagnosed with spina bifida and/or related conditions. Appointments can be requested through the Margaret Hackett Family Program (MHFP) using this link here. Patients and family members may also contact the Margaret Hackett Family Program (MHFP) at 773-795-0622, or by email at mhfcp@bsd.uchicago.edu. For more information about the MHFP, visit mhfcp.uchicago.edu.
Mercyhealth Hospital - Rockton Avenue Pediatric Special Needs Clinic
Mercyhealth Orthopedic Center of Excellence
Building 2, Fourth Floor, 2350 N. Rockton Ave.
Rockford, IL
Phone: (815) 971-7400
The clinic is held the third Wednesday every other month. The clinic serves patients from birth to age 18 with a variety of special needs, including spina bifida, developmental/motor delays, bracing, gait disturbances, and neonatal intensive care unit graduates. They would possibly see adult patients as well, call them for more info. Pediatric specialists available for consult include: Orthopedic Surgery, Rehabilitation Medicine, Neurology, Orthotics, Physical Therapy, Occupational Therapy, Social Services, Social Support Groups, and Coordination with Rockford Spine Center. Click here for more info.
The Shirley Ryan AbilityLab (formerly the Rehabilitation Institute of Chicago)
355 E. Erie St.
Chicago, IL 60611
Phone: 312-238-1000
The Shirley Ryan AbilityLab offers a variety of services and resources for children and adults living with spina bifida. The Shirley Ryan AbilityLab treats children and teens as they transition from pediatric care to adult care, as well as adults on an ongoing basis.
For adults living with spina bifida, the Shirley Ryan AbilityLab treats several key issues: bladder and bowel control, depression, education and work accommodations, fitness, weight, mobility, osteoporosis/fractures, pressure sores and sexual function. Click here for more info.
Northwestern Medicine
675 N. St. Clair
Chicago, IL 60611
Phone: 312-694-6468
Northwestern Medicine offers comprehensive, consolidated care for adults with spina bifida. We have an integrated, multidisciplinary team of specialists who offer innovative and minimally invasive treatments in our office.
During a standard clinic visit, patients can see the following medical professionals:
Urologist
Physiatrist
Clinical Social Worker
Advocate Children's Hospital
4440 W. 95th St.
Oak Lawn, IL 60453
Phone: (708) 684-1013
Advocate Children's Hospital has a multidisciplinary team that treats children with spina bifida. The team includes specialists in neonatology, neurodevelopment, neurology, neurosurgery, occupational therapy, physical therapy, physiatry, and social work. They also have a Pediatric Developmental Center, treatment programs for your child, as well as training, education and support groups for your family. Phone: 773-296-7340.
Advocate Lutheran General Children's Hospital
Yachtman Pavillion
1675 Dempster Street
Park Ridge, IL 60068
Phone: (847) 318-9330
Advocate Lutheran General Children's Hospital has a multidisciplinary team that treats children with spina bifida. The team includes specialists in neurosurgery, urology, orthopedics, orthotics, physical therapy, and social work. Patients can call central scheduling at 847-318-9330 and tell them you’d like to be scheduled in the Spina Bifida Clinic.
Children's Hospital St. Louis
One Children's Place
St. Louis, MO 63110
(314) 454-5333
Spina Bifida Clinic appointments are available the second and fourth Tuesday of the month, 8 a.m. to 4 p.m., in Suite 2A, second floor of St. Louis Children's Hospital. For appointments call 314.454.KIDS (5437) or 800.678.KIDS (5437), ask for Shellie.
Riley Children’s Health at Indiana University Health
Pediatric Care Center - Developmental Pediatrics
705 Riley Hospital Drive
Indianapolis, IN 46202
317-944-4846 for pediatrics and 317-944-7458 for adults
The Spina Bifida Program is a multidisciplinary program that includes pediatric experts in neurosurgery, orthopedics, developmental pediatrics, physical medicine and rehabilitation and urology. We also provide nutritional care, social services and physical therapy if needed. The doctors and surgeons with the Spina Bifida Program also provide the same multidisciplinary care for patients as they transition into adulthood. This allows your child to see the doctors he or she needs to see by self-referral and by physician referrals. The adult clinic is on the 2nd Tuesday of the month and the pediatric clinic on every other Tuesday.
SSM Health Cardinal Glennon Children’s Hospital
1465 S. Grand Blvd.
St. Louis, MO 63104
314-268-4178
The spina bifida clinic is a multidisciplinary clinic for children with all forms of spina bifida. The clinic is staffed by both surgeons or advanced practice providers, as well as nurses, physical therapists, and orthotic specialists. By utilizing the spina bifida clinic, your child can see all their providers on one day in one location. Radiographic imaging is often scheduled that same day. Spina bifida clinics are held the first and third Wednesdays of the months from 12:30 - 3:30 pm.
Shriners Children’s St. Louis
2001 S. Lindbergh Blvd.
St. Louis, MO 63131
Phone: 314-432-3600, ext. 1672 - new patients ext. 1122
Spina Bifida Clinic is the 4th Friday of the month. Click here for more info.
Pelvic Health Therapy Resource:
PhysioPartners in Lakeview
2869 N. Lincoln Avenue
Chicago, IL 60657
Phone: (773) 665-9950
PhysioPartners offers pelvic health therapy for a range of continence issues for clients of all ages. For children, adolescents, and adults with spina bifida, our pelvic health occupational therapist is available to support individuals with managing continence, assessing readiness to learn self-catheterization, training in self-catheterization skills, and assessment of potential equipment or strategies for improved bowel management.
Debbie Victor, OTD, OTR/L, (she/her) received her doctorate of occupational therapy from the University of Illinois at Chicago in 2008. Dr. Victor specializes in pelvic health, and she enjoys supporting people of all ages who experience bladder issues, bowel issues, and pelvic pain.
Hydrocephalus Association (HA) Physician’s Directory
An interactive tool to locate specialists to manage your condition. The directory includes neurosurgeons, neurologists, and neuropsychologists for all ages. You can search by location, specialty and age range.
Health Resources & Services Administration (HRSA) Health Center Program Health Center Finder
Health centers are community-based and patient-directed organizations that deliver comprehensive, culturally competent, high-quality primary health care services. Health centers also often integrate access to pharmacy, mental health, substance use disorder, and oral health services in areas where economic, geographic, or cultural barriers limit access to affordable health care services. They typically provide services regardless of patients’ ability to pay and charge for services on a sliding fee scale. Use this tool to type in your address and find one close to you.
Illinois Dental Clinics is a website maintained by volunteers that lists sliding scale and low cost dental clinics in Illinois.
Dentistry at UI Health Mile Square Center Primary and Immediate Care Center
Auburn Gresham Clinic
839 W. 79th St.
Chicago, IL 60620
312.996.2000
mshcdental@uic.edu
The dental clinic at UI Health Miles Square Center provides dental care for patients with disabilities. Patients do not need to be patients of any other services at Miles Square in order to be seen at the dental clinic. Dr. Sue Etminan, the primary dentist, and her team have the capacity to provide nitrous oxide for those who need it, as well as see wheelchair users in their chairs. The office accepts Medicaid and most other insurances.
NeedyMeds is a 501(c)(3) national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs.
Toolkit For Transitioning Medical Care
It is so important that the members of your adult hydrocephalus medical team have the proper information about your hydrocephalus to successfully manage your care. And, as we know, everyone with hydrocephalus is different. For this reason, the Hydrocephalus Association, their Medical Advisory Board, and members of the American Society of Pediatric Neurosurgeons (ASPN) developed the Medical Summary for Transitioning Hydrocephalus Patients that you can download and fill out with your current pediatric medical team. Once complete, take this to your new adult neurosurgeon, neurologist, and any other members of your adult medical team you feel will benefit from understanding your journey with hydrocephalus. This includes a Physician’s Assistant, Nurse Practitioner, other specialists.
Nutrition Resources
Find a nutrition expert in your area.
This tool allows you to input your zip code in order to find a nutrition expert in your area for both in-person or telehealth visits. This program is run by the Academy of Nutrition and Dietetics.
Northwestern Medicine Nutrition
Northwestern Medicine Center for Lifestyle Medicine Lavin Family Pavillion
259 E Erie St. 16th Floor
Chicago, IL 60611
312.695.2300
Northwestern Medicine Nutrition provides several services to help you make gradual changes for lasting success. Work with a lifestyle specialist to help you set and achieve health-related goals. Available in-person or through telehealth.
Advocate Good Shepard Hospital Nutrition Services
1301 S. Barrington Rd.
Barrington, IL 60010
847.620.4500
Appointments can be made by calling 847.620.4500 or contacting the dietician Madhu Jain at 847.620.4585.
Advocate Good Shepard Nutrition Services work with patients using evidence-based individual counseling based on your current nutrition guidelines. Sessions are available for a variety of dietary needs.
Check out this article detailing nutrition considerations for adults with spina bifida!
Updated 8/30/2024