Philip A. Keelty Center for Spina Bifida and Related Conditions
Kennedy Krieger Institute, 801 North Broadway, Baltimore, MD 21205
Director:
The Philip A. Keelty Center for Spina Bifida and Related Conditions is supported, in part, by the ongoing support of the Silberstein-Harryman Endowment
The Philip A. Keelty Center for Spina Bifida and Related Conditions serves children and adults with spina bifida, myelomeningocele (meningomyelocele), or myelodysplasia, as well as other related conditions of the brain and spine such as hydrocephalus, Arnold-Chiari malformation, and tethered spinal cord syndrome. We also see children with some other complex birth defects such as caudal regression syndrome, sacral dysgenesis, or other multiple congenital anomaly syndromes.
Our mission is to assist individuals with spina bifida and related conditions in leading healthy and satisfying lives. The Spina Bifida Center has a multidisciplinary team that includes members specializing in Pediatrics, Pediatric Neurology, Pediatric Urology, Pediatric Orthopedics, Nursing, Physical Therapy, Occupational Therapy, Neuropsychology, and Social Work. Through an interdisciplinary approach, we provide quality medical care that focuses on optimizing health and function, preventing secondary conditions, and coordination of health care services.
Spina bifida is a complex condition that presents challenges in multiple domains. Although experts agree that multidisciplinary care is the gold standard for the medical care of individuals with spina bifida, the multidisciplinary team often does not address issues that fall outside the medical domain such as school readiness, vocational training, or participation in sports. We propose a new conceptual model for spina bifida services throughout the lifespan that integrates issues and perspectives from multiple arenas including medical, habilitative, educational, and social domains. Our model incorporates the latest WHO framework for conceptualizing function and disability which not only includes the dimension of body function and structure, but also the dimensions of activity and participation. Furthermore, our model emphasizes the importance of anticipatory guidance and planning for transitional periods.
Evaluation and treatment of spina bifida and secondary conditions (such as seizures, coordination problems or weakness, learning disabilities, chronic wounds or incontinence) is achieved through a working partnership between interdisciplinary team members including the patient and family. Treatment plans are coordinated with the patient’s primary care provider, family, school, and community.
The Spina Bifida Center is receiving an increased number of referrals of adults due to a lack of adult facilities with expertise in this area; it is also identifying previously undiagnosed neurocognitive dysfunction in this population.
Letter from a family: “We are writing this letter to commend you on the superb assistance that your staff at the Kennedy Krieger Spina Bifida Center provided my family in acquiring funding for the Kennedy Krieger’s Rehabilitation Program following our son Neal’s extensive orthopedic surgery. I additionally wanted to thank Dr. Kinsman and Dr. Sponseller. Neal is not only walking 100 percent using his canes, the Socialization Group he attends on Thursdays has increased his self esteem and independence to the point that he is anticipating High School with eagerness. It is most pleasurable to interface with an organization such as yours, which actually considers the needs of the patients first. Thanks again from the whole family.”
The Philip A. Keelty Center for Spina Bifida and Related Conditions serves children and adults with spina bifida, myelomeningocele (meningomyelocele), or myelodysplasia, as well as other related conditions of the brain and spine such as hydrocephalus, Arnold-Chiari malformation, and tethered spinal cord syndrome. We also see children with some other complex birth defects such as caudal regression syndrome, sacral dysgenesis, or other multiple congenital anomaly syndromes.
Our mission is to assist individuals with spina bifida and related conditions in leading healthy and satisfying lives. The Spina Bifida Center has a multidisciplinary team that includes members specializing in Pediatrics, Pediatric Neurology, Pediatric Urology, Pediatric Orthopedics, Nursing, Physical Therapy, Occupational Therapy, Neuropsychology, and Social Work. Through an interdisciplinary approach, we provide quality medical care that focuses on optimizing health and function, preventing secondary conditions, and coordination of health care services.
Spina bifida is a complex condition that presents challenges in multiple domains. Although experts agree that multidisciplinary care is the gold standard for the medical care of individuals with spina bifida, the multidisciplinary team often does not address issues that fall outside the medical domain such as school readiness, vocational training, or participation in sports. We propose a new conceptual model for spina bifida services throughout the lifespan that integrates issues and perspectives from multiple arenas including medical, habilitative, educational, and social domains. Our model incorporates the latest WHO framework for conceptualizing function and disability which not only includes the dimension of body function and structure, but also the dimensions of activity and participation. Furthermore, our model emphasizes the importance of anticipatory guidance and planning for transitional periods.
Evaluation and treatment of spina bifida and secondary conditions (such as seizures, coordination problems or weakness, learning disabilities, chronic wounds or incontinence) is achieved through a working partnership between interdisciplinary team members including the patient and family. Treatment plans are coordinated with the patient’s primary care provider, family, school, and community.
- Multidisciplinary Spina Bifida Clinic (MDSBC):
Meets the 2nd, 4th and 5th Fridays of the month. Includes specialists in Pediatrics, Neurosurgery, Urology, Orthopedics, Physical Therapy, Occupational Therapy, Neuropsychology, Social Work and Nursing. Routine kidney and bladder ultrasounds are also arranged as part of this clinical program. We recommend that all individuals with spina bifida and related conditions follow-up in MDSBC in order to monitor longitudinally for problems and to prevent secondary conditions. For individuals over one year of age, routine multidisciplinary follow-up is recommended every 6 months. For infants less than one, follow-up is recommended every 3 months. More frequent follow-up is also indicated for those individuals with active problems or those that need extensive training to learn a new skill such as bowel or bladder continence training. - General Spina Bifida Care:
Dr. Levey and nurse practitioner Susan Demetrides have office hours outside of MDSBC to provide general medical consultation for individuals with spina bifida or related conditions. New patients to the Spina Bifida Center are evaluated first by these providers before being referred to MDSBC. - Continence Management:
The Keelty Center staff have developed expertise in managing incontinence due to a wide variety of conditions. Evaluation and management of urinary and bowel incontinence is offered through this clinic. We are developing an interdisciplinary approach that includes Nursing, Behavioral Psychology, and Occupational Therapy. Continence Clinic appointments are usually available the 1st and 3rd Fridays of the month. - Wound Care:
We offer medical consultation regarding management of chronic wounds and decubitus ulcers for individuals with spina bifida and related conditions as well as for any child with a chronic wound.
The Spina Bifida Center is receiving an increased number of referrals of adults due to a lack of adult facilities with expertise in this area; it is also identifying previously undiagnosed neurocognitive dysfunction in this population.
Letter from a family: “We are writing this letter to commend you on the superb assistance that your staff at the Kennedy Krieger Spina Bifida Center provided my family in acquiring funding for the Kennedy Krieger’s Rehabilitation Program following our son Neal’s extensive orthopedic surgery. I additionally wanted to thank Dr. Kinsman and Dr. Sponseller. Neal is not only walking 100 percent using his canes, the Socialization Group he attends on Thursdays has increased his self esteem and independence to the point that he is anticipating High School with eagerness. It is most pleasurable to interface with an organization such as yours, which actually considers the needs of the patients first. Thanks again from the whole family.”
Hours of Operation:
The Multidisciplinary Spina Bifida Clinics (MDSBC) are held on the 2nd, 4th, and 5th Fridays of the month and run from about 12 noon until about 5pm. Evaluations for general spina bifida care, continence, or wounds are done on Monday afternoons or the 1st and 3rd Fridays of the month. A nurse, pediatrician or pediatric nurse practitioner experienced in managing problems related to spina bifida is available to answer phone calls from 8:30am to 5pm Monday to Friday, excluding holidays.
Contacts:
To make a referral or request an initial evaluation:
Contact our Care Management Office
Toll-Free Referral: (888) 554-2080
Local Referral: (443) 923-9400
For follow-up appointments:
Call the Lobby Care center at (443) 923-2600
For questions, medical problems or prescription refills:
Administrative Coordinator
Spina Bifida Center
Phone: (443) 923-9130
Fax: (443) 923-9145
E-Mail: SpinaBifidaCenter@KennedyKrieger.org
Contact our Care Management Office
Toll-Free Referral: (888) 554-2080
Local Referral: (443) 923-9400
For follow-up appointments:
Call the Lobby Care center at (443) 923-2600
For questions, medical problems or prescription refills:
Administrative Coordinator
Spina Bifida Center
Phone: (443) 923-9130
Fax: (443) 923-9145
E-Mail: SpinaBifidaCenter@KennedyKrieger.org
Myelomeningocele
Hydrocephalus
Arnold-Chiari malformation (Chiari malformation)
Meningocele
Lipomyelomeningocele
Lipomeningocele
Myelocystocele
Encephalocele
Caudal regression
Sacral Dysgenesis
Tethered spinal cord syndrome
Childhood syringomyelia
Childhood-acquired spinal cord injury (in conjunction with the KKI rehabilitation team)
Chronic wounds
Decubitus ulcers
Neurogenic bladder (neuropathic bladder)
Neurogenic bowel
Incontinence
·Audiology Clinic
·Behavioral Psychology Outpatient Programs
·Community Rehabilitation Program
·Neurology and Clinical Neurophysiology Clinic
·Neuropsychology and Developmental Psychology Clinic
·Nutrition Outpatient Program
·Occupational Therapy Clinic
·Orthopedic Outpatient Clinic
·Pediatric Rehabilitation Clinic
·Pediatric Rehabilitation Continuum
·Pediatric Rehabilitation Unit (PRU)
·Physical Therapy Clinic
·Social Work Outpatient Mental Health Program
·Specialized Transition Program
·Speech and Language Outpatient Clinic
·Behavioral Psychology Outpatient Programs
·Community Rehabilitation Program
·Neurology and Clinical Neurophysiology Clinic
·Neuropsychology and Developmental Psychology Clinic
·Nutrition Outpatient Program
·Occupational Therapy Clinic
·Orthopedic Outpatient Clinic
·Pediatric Rehabilitation Clinic
·Pediatric Rehabilitation Continuum
·Pediatric Rehabilitation Unit (PRU)
·Physical Therapy Clinic
·Social Work Outpatient Mental Health Program
·Specialized Transition Program
·Speech and Language Outpatient Clinic
The Resource Finder: A Project of Kennedy Krieger Institute
Additional Spina Bifida Resources for Adolescent Transition
Spina Bifida Association of America
(www.sbaa.org)
ASBAH - Association for Spina Bifida and Hydrocephalus
(http://www.asbah.org)
Birth Defects Research for Children
(http://www.birthdefects.org)
Chesapeake Potomac Spina Bifida Association
(http://www.chesapeakespinabifida.org)
Children with Spina Bifida - A Resource Page for Parents & Professionals
(http://www.waisman.wisc.edu/~rowley/sb-kids)
Family Voices
(http://www.familyvoices.org)
Folic Acid Campaign, NCBDDD,CDC
(http://www.cdc.gov/ncbddd/folicacid)
Genetic Alliance, Inc.
(http://www.geneticalliance.org)
International Federation for Hydrocephalus and Spina Bifida
(http://www.ifglobal.org)
Latex Allergy Links - Spina Bifida
(http://latexallergylinks.tripod.com/sb.html)
National Birth Defects Prevention Network
(http://www.nbdpn.org)
National Center for Learning Disabilities
(http://www.ncld.org)
National Information Center for Children and Youth with Disabilities
(http://www.nichcy.org)
National Institute of Neurological Disorders and Stroke (NINDS)
(http://www.ninds.nih.gov)
NINDS Spina Bifida Information Page
(http://www.ninds.nih.gov/health_and_medical/disorders/spina_bifida.htm)
National Organization on Disability
(http://www.nod.org)
Spina Bifida and Hydrocephalus Association of Canada
(http://www.sbhac.ca)
Spina Bifida Association of America
(http://www.sbaa.org)
Spina Bifida Fact Sheet
(http://www.nichcy.org/pubs/factshe/fs12txt.htm)
SpinaBifida.Net - Spina Bifida Web Sites
(http://www.spinabifida.net)
SpinaBifida.org - Information Page
(http://www.spinabifida.org/Spina%20Bifida.htm)
SCI Information Network
(http://www.spinalcord.uab.edu)
The Arc of the United States
(http://www.thearc.org)
Veterans Administration - Spina Bifida Homepage
(http://www.va.gov/hac/spina/spina.html)
Outpatient Programs l Inpatient Programs l Community Programs l
Continuums l Genetic Laboratories l Clinical Disciplines/Depts.
Additional Spina Bifida Resources for Adolescent Transition
Spina Bifida Association of America
(www.sbaa.org)
ASBAH - Association for Spina Bifida and Hydrocephalus
(http://www.asbah.org)
Birth Defects Research for Children
(http://www.birthdefects.org)
Chesapeake Potomac Spina Bifida Association
(http://www.chesapeakespinabifida.org)
Children with Spina Bifida - A Resource Page for Parents & Professionals
(http://www.waisman.wisc.edu/~rowley/sb-kids)
Family Voices
(http://www.familyvoices.org)
Folic Acid Campaign, NCBDDD,CDC
(http://www.cdc.gov/ncbddd/folicacid)
Genetic Alliance, Inc.
(http://www.geneticalliance.org)
International Federation for Hydrocephalus and Spina Bifida
(http://www.ifglobal.org)
Latex Allergy Links - Spina Bifida
(http://latexallergylinks.tripod.com/sb.html)
National Birth Defects Prevention Network
(http://www.nbdpn.org)
National Center for Learning Disabilities
(http://www.ncld.org)
National Information Center for Children and Youth with Disabilities
(http://www.nichcy.org)
National Institute of Neurological Disorders and Stroke (NINDS)
(http://www.ninds.nih.gov)
NINDS Spina Bifida Information Page
(http://www.ninds.nih.gov/health_and_medical/disorders/spina_bifida.htm)
National Organization on Disability
(http://www.nod.org)
Spina Bifida and Hydrocephalus Association of Canada
(http://www.sbhac.ca)
Spina Bifida Association of America
(http://www.sbaa.org)
Spina Bifida Fact Sheet
(http://www.nichcy.org/pubs/factshe/fs12txt.htm)
SpinaBifida.Net - Spina Bifida Web Sites
(http://www.spinabifida.net)
SpinaBifida.org - Information Page
(http://www.spinabifida.org/Spina%20Bifida.htm)
SCI Information Network
(http://www.spinalcord.uab.edu)
The Arc of the United States
(http://www.thearc.org)
Veterans Administration - Spina Bifida Homepage
(http://www.va.gov/hac/spina/spina.html)
Continuums l Genetic Laboratories l Clinical Disciplines/Depts.