Glossary

Abscess – A cavity containing pus, deep under the skin.

Accessible – Easy to approach or enter, as in a building or classroom that is designed to accommodate students who are disabled (e.g., wheelchair accessible).

Acute care – Medical services provided after an accident or for a disease, usually for a short time.

Adapted – Changed, altered, or adjusted to meet a student’s unique needs (e.g., curriculum, materials, equipment, toys, activities, classroom environment).

Adapted physical education – Physical education that is designed to be safe and successful for students with disabilities; ideally taught by a certified adapted physical education teacher.

Advocate – A person knowledgeable about disability issues and procedures who takes action to help a child with disabilities; an advocate can be a parent of a child with disabilities or a professional.

Ambulatory – Capable of walking.

Ambulatory care – Care provided in an outpatient clinic.

Anaphylaxis – A severe, sometimes fatal allergic reaction involving breathing problems. The allergic reaction can be due to a substance, a drug, vaccine, food, venom, or chemical.

Ankle-foot orthotics (AFOs) – Hard plastic braces that make the ankles stable.

Assessment – Gathering information about the strengths and needs of a student to determine the level of functioning and learning characteristics (learning needs).

Assistive technology – Any device, piece of equipment, or apparatus designed to help a child compensate for an impairment (e.g., computer, voice synthesizer, Braille writer).

Benefits – Health and related services guaranteed to be provided by a health plan.ulvinar dapibus leo.

Bifida – A word that means “split in half.”

Birth defect – A condition that is present at birth.

Bladder – The organ in the body that receives urine from the kidneys by way of the ureters; urine is stored here until it is expelled from the body.

Blocked shunt – A blockage of the tube that drains extra spinal fluid from the ventricles of the brain. This blockage prevents the shunt from working properly.

CAT scan (Computerized Axial Tomography scan) – A sectional x-ray used to picture the brain and other organs and structures, such as the kidneys and hips. Enlargement of the brain’s ventricles, as shown by this test, may indicate a problem with a shunt. CAT scan may be used to help determine placement of a shunt.

Catheter – A tube used to remove fluid from a cavity. A soft, thin tube that is inserted into the bladder to drain urine.

Cecostomy – Surgical procedure to create an artificial opening by connecting the colon to the abdominal wall for the purpose of instilling an anti-grade enema.

Central nervous system (CNS) – The brain and the spinal cord.

Cerebrospinal fluid – Clear, colorless fluid in and around the brain that helps protect the brain and spinal chord.

Cervical vertebrae – The first 7 bones of the spine located in the neck.

Chiari malformation – A condition in which the back part of the brain (brain stem and cerebellum) is displaced downward and does not develop correctly. The brain is pressed into the opening at the base of the skull where the spinal cord exits. This deformity, present in most children with Spina Bifida, does not, in itself, affect intelligence. Feeding problems, breathing problems, and weakness in the arms may result in some children. Any such symptoms should be brought to the attention of your neurosurgeon.

Clean Intermittent Catheterization (CIC) – A procedure performed to empty the bladder.

Clubfoot – A deformity in which the foot is twisted at the ankle so that it can not rest properly on the ground.

Coccyx – The bone at the lower end of the spine (tail bone).

Cognition – The mental process of knowing, thinking, learning, and judging.

Cognitive – The process people use for remembering, reasoning, understanding, and using judgment; the ability to think and make sense out of what is seen, heard, felt, and experienced, in order to solve problems.

Collaborate – To work together.

Communication – The ability to make wants and needs understood using verbal language, sign language, gestures, facial expression, computers, or a combination of methods.

Complete blood count (CBC) – A test to determine the type and number of blood cells present in the blood stream. An elevation of white cells may indicate the presence of infection in the body.

Contracture – A fixed or abnormal position of a joint, or limited mobility of a joint caused by actual shortening of a muscle, often from lack of use.

Co-payment – What a consumer pays for each health visit or service received.

CT scan – The CT scan is an x-ray of the brain. It creates a picture of the brain. For people who have Spina Bifida, it allows the doctor to look for possible causes of seizures and brain functioning issues. Computed Tomography (CT) is also known as or sometimes called CAT Scan.

Curriculum – A course of study.

Cyst – A closed sac or pouch in the body containing fluid or semisolid material.

Cystometrogram (CMG) – A study that measures the activity of the bladder muscle, pressure in the bladder, and response of the sphincter during the filling of the bladder.

Decubitus – An open skin sore caused by pressure.

Deductible – Annual amount that the consumer must pay for health services before the insurance plan pays.

Dehydration – An excessive loss of water from the body tissues.

Detrusor-Sphincter Dyssynergia (DSD) – The bladder sphincter should open when the bladder contracts. When it contracts instead, as is the case in some individuals with Spina Bifida, this can lead to high pressure in the bladder and inadequate emptying of the bladder, which is damaging to the kidneys.

Development – Stages of growth from infancy on up, observable in sequential steps (rolling over, sitting up, standing, walking, talking). Development is generally measured in the following areas: fine motor, gross motor, cognitive, self-help, social-emotional, and language (expressive and receptive).

Developmental delay – A delay in the appearance of some steps or phases of growth and development.

Dietitian/nutritionist – A professional who has training in the nutritional needs of children for normal growth and development as well as in special medical conditions. A dietitian or nutritionist specializing in pediatrics can work with you to prepare foods and teach eating habits that will help your baby to grow well, maintain a healthy weight, resist infection after surgeries, and prevent bowel problems. A dietitian or nutritionist can also work with you if you have special concerns about your baby, such as poor appetite, gaining too much or too little weight, spitting up, constipation or diarrhea, problems with chewing or swallowing, or adjusting calories in a tube feeding.

Dual-eligibles – People who are eligible for both Medicaid and Medicare.

Durable Medical Equipment (DME) – Necessary medical equipment that is usually not disposable, e.g., wheelchairs, walkers, and ventilators.

Dyslexia – Reading disability or difficulty in understanding written symbols

Edema – Any abnormal accumulation of fluid; swelling often seen in the feet of individuals who use wheelchairs or do not walk.

Electroencephalogram (EEG) – The EEG may help the doctor learn about what type of seizure your child has and what part of the brain it comes from. Small disks attached to wires are placed on your child’s head to measure electrical waves coming from the brain. Some children with normal EEGs have seizures and some children with abnormal EEGs do not have seizures. The EEG is not a painful test, and there is no risk of injury to your child.

Fee-for-service – Traditional health insurance, allowing the consumer to choose providers and services, often with a deductible and co-payment.

Fellow – A doctor who is doing advanced studies in a specific field. The fellow will work closely with your baby’s attending physician. You are most likely to meet a fellow if your baby is at a teaching hospital.

Folic acid – A B-vitamin that can help reduce the risk of Spina Bifida by 50 to 70 percent. All women who could become pregnant need to take folic acid every day.

Fracture – A bone break or crack.

Gatekeeper – A person, usually a primary care physician, given authority by a health care plan to decide what services will be provided and paid for, to approve all referrals, and sometimes to coordinate care.

Genetic counselor – A professional with training in the field of genetics and birth defects. A genetic counselor can help you understand how Spina Bifida occurs, the chances of Spina Bifida happening again in a future pregnancy, and the option of prenatal diagnosis for future pregnancies. The genetic counselor can also provide emotional support for you and your family during this stressful time.

Grievance procedure – Defined process in a health plan for consumers or providers to use when there is a disagreement about a plan’s services, billings, or general procedures.

Health care provider – Any professional who provides health care, such as a nurse, doctor, social worker, urologist, or a physiatrist.

Health Maintenance Organization (HMO) – Health plan that requires its enrollees to use only certain health providers and hospitals.

High bladder pressures – Increased pressure in the bladder. The bladder is meant to store urine under low pressure. When high bladder pressure occurs because of abnormal nerves, problems can develop with kidney damage, infections, and wetting.

Hydrocephalus – Often called “water on the brain,” it is caused by an accumulation of cerebrospinal fluid in the ventricles of the brain. The cerebrospinal fluid does not drain well, causing enlarged ventricles and increased pressure.

Hydronephrosis – Swelling in the kidneys. This can be due to several conditions. It is usually due to increased pressure from abnormal bladder function and/or reflux of urine from the bladder into the kidney. Hydronephrosis can be detected on a routine ultrasou

IEP (Individualized Education Program) – A plan specifying education goals and the ways they will be reached, as required by law for every child in a special education program

Inclusion – Including or accepting children with disabilities in regular schools, programs, & activities in a meaningful way.

Incontinence – Inability to control urine and stool.

Increased residual urine – Retention of large amounts of urine can lead to bacterial overgrowth and infection, and increase the risk of developing high bladder pressures. During normal voiding, the bladder almost completely empties so that in an adult, usually less than 20 cc of urine remain in the bladder. Complete bladder emptying helps prevent significant bladder infection.

Independent Practice Association (IPA) – Association of physicians and other providers, including hospitals, that contracts with an HMO to provide services to enrollees.

Infant stimulation – A program designed to help an infant or young child progress toward normal development.

Intermittent catheterization – The periodic insertion of a catheter into the bladder to totally drain the urine.

IVP (Intravenous Pyelogram) – An x-ray that is taken of the kidneys, ureters, and bladder to determine how well they function. A dye is injected into the blood stream and its progress through the urinary system is followed to look for any problem.

Jargon – Specialized language used in professional fields.

Kidneys – Organs that filter out waste products from the blood.

Latex – A natural rubber found in things such as surgical gloves, balloons, and some catheters. Many people with Spina Bifida develop an allergy to latex.

Lipomyelomeningocele – A bony defect fatty lump near the spine. Sometimes, but not often, the fatty tissue extends into the spinal canal, where it can expand and press on the spinal cord.

Long-term care – Health maintenance and health services, including respite, home, and personal care for people with chronic conditions, disabilities, or mental illness. Long-term care can be provided in an institution or in the community.

Low leak-point pressure – A sphincter that is defective, resulting in urine that leaks under low bladder pressure. The sphincter is the bladder muscle at the base of the bladder that holds the urine in the bladder and prevents leakage.

Lumbar – Bones in the lower back area of the spine.

Managed care – A way to finance and deliver health care for a set fee using a defined network of providers. Organizations that deliver managed care are known as MCOs (Managed Care Organizations), HMOs (Health Maintenance Organizations) or PPOs (Preferred Provider Organizations).

Medicaid – The federal law that uses state and federal funds to provide health insurance for people who meet certain eligibility requirements, including those who are lowincome, blind, disabled, and elderly.

Medical necessity – Legal term used to determine eligibility for health benefits and services. It describes services that are consistent with a diagnosis, meet standards of good medical practice, and are not primarily for the convenience of the patient.

Medicare – Title XX of the Social Security Act that pays for health care for the elderly and adults with disabilities.

Meninges – Protective coverings of the spinal cord.

Meningocele – The type of Spina Bifida in which the meninges come through the opening on the back, forming a sac.

MRI (Magnetic Resonance Imaging) – A test that uses electromagnetic fields to picture structures inside the body, such as the brain and spinal cord. The MRI scan uses magnetic energy instead of an x-ray to create a picture of the brain. It creates a clearer picture than the CT scan, and in some cases gives better information.

Myelogram – An x-ray of the spinal cord that requires infusion of a dye around the spinal cord through a lumbar puncture. The dye allows the spinal cord to be pictured on the x-ray.

Myelomeningocele – The type of Spina Bifida in which the meninges and spinal nerves come through the opening on the back.

Neonatologist – A physician who has training in the care of premature babies and other newborns with immediate medical needs. This doctor will be in charge of your baby’s care while he or she is in the Neonatal Intensive Care Unit (NICU).

Nephrologist – See the listing for urologist.

Neural tube – The tube in the developing baby that becomes the spinal cord and brain. In Spina Bifida, the lower part of the neural tube does not close completely.

Neurosurgeon – A physician who specializes in the diagnosis and surgical treatment of problems of the nervous system, consisting of the brain, the spinal cord, and the nerves. The neurosurgeon headed up the surgical team that operated on your baby’s back to close the spinal defect shortly after your baby was born. The neurosurgeon also decides if a shunt is needed to treat hydrocephalus, should it develop. It is important that your baby be followed by a neurosurgeon throughout his or her life.

Nurse – A medical professional who is trained to assess all patient needs and who works as part of the family and health care team to make sure those needs are met. Nurses help patients in the hospital, at clinic, or in the doctor’s office. You will meet many nurses who can help you learn about your baby and how you can best care for him or her. Each baby has a primary nurse who supervises the care he or she receives while in the hospital. Many different nurses will care for your baby, but the primary nurse will coordinate your baby’s care.

Occupational therapist – A professional who offers therapeutic treatment aimed at helping the injured, ill, or disabled child develop and improve self-help skills and adaptive behavior and play. The occupational therapist also addresses the child’s motor, sensory, and postural development with the overall goals of preventing or minimizing the impact of impairment and developmental delay, and promoting the acquisition of new skills to increase the child’s ability to function independently.

Ophthalmologist – A doctor who specializes in the treatment of eye problems. Children with Spina Bifida sometimes develop crossed eyes (strabismus). The ophthalmologist will suggest treatment for any eye problems that may occur.

Orthopedic surgeon – A doctor who is trained to correct deformities of the skeletal system. Children with Spina Bifida often develop deformities of the hips and legs because their muscles do not work correctly. Curvature of the spine (scoliosis) can also occur. Your child’s orthopedic surgeon will recommend and prescribe treatment aimed at preventing and/or correcting these kinds of problems. Bracing is often required and surgery may be needed to help your child function to the best of his or her ability. Your baby will need to be under the care of an orthopedic surgeon as he or she grows and develops.

Orthotist/prosthetist – Orthotists assist in the provision of casts, braces, and artificial limbs to people with some physical disabilities. They work closely with physical therapists and physicians.

Ostomy – Surgical procedure where an opening is made.

Pediatrician – A doctor whose specialty is the growth and development of the child as well as the care, treatment, and prevention of the diseases and injuries that affect children. Once discharged from the hospital, it is often the pediatrician who will coordinate the total care required and make appropriate referrals when necessary.

Physical therapist – A professional who knows how to exercise and position your baby. As soon as possible, the therapist will begin range of motion exercises, which help to preserve flexibility and mobility in your baby’s joints. Your baby’s physical therapist will be available to assist in determining equipment needs (wheelchair, bath chair, etc.).

Point of Service (POS) Plan – Health plan whose members can choose their services when they need them, either in the HMO or from a provider outside the HMO at some cost to the member.

Preferred Provider Organization (PPO) – Managed Care Organization (MCO) that contracts with a network of providers who deliver services for set fees.

Pressure sore – Skin breakdown that occurs from excessive pressure on any part of the skin.

Range of motion (ROM) – Exercises of the body’s joints done to prevent deformities, such as contractures.

Reflux – Abnormal backward flow of fluids, such as a flow of urine from the bladder back up to the kidney, which threatens the health of the kidneys, or the flow of food back up the esophagus.

Renal – Referring to the kidney.

Resident – A doctor who has completed medical training and is working in a specific field. The resident works on a team with the fellow and the attending physician. You will probably meet a resident at a teaching hospital or at your child’s Spina Bifida Clinic.

Sacral – Bones in the area of the spine just above the tailbone.

Scoliosis – Curvature of the spine.

Sexuality – Refers to all the ways men and women express being male or female.

Shunt – A tube that is put into the ventricles (cavities) in the brain to help drain cerebrospinal fluid.

Shunting procedure – An operation in which the neurosurgeon inserts a tube inside the ventricles (cavities) of the brain to drain off the extra spinal fluid, re-routing it to another part of the body.

Small bladder capacity – Decreased size of the bladder. A small bladder capacity can adversely affect the ability to hold or store urine.

Social skills – How a child responds and interacts with others.

Social worker – A professional who is aware of services and agencies that can be helpful to you and your baby. Because your baby has Spina Bifida, he or she may be eligible for some financial assistance. The social worker can guide you toward these sources and make sure that you are aware of all the benefits that are available to help your child. This person can also offer you guidance and support.

Spend-down – The process of using up all income and assets on medical care in order to qualify for Medicaid.

Spina – A word that means “spine.”

Spina Bifida – Literally “spine in two parts,” it means that the baby’s spinal column failed to close properly before birth; another term for myelomeningocele.

Spina Bifida Occulta – A type of Spina Bifida involving only the bones in the spine, with no opening in the back.

Spinal column – The chain of small bones (vertebrae) that extends from the head to the tailbone; the backbone.

Spinal cord – The part of the central nervous system enclosed by the spinal column.

Spinal fluid – Fluid that circulates around the brain and spinal cord; it protects these organs from shock by acting as a cushion.

Stoma – An artificially created opening between a cavity or passage and the body’s surface.

Supplemental Security Disability Income (SSDI) – The Social Security Administration provides monthly cash benefits for individuals based on their inability to work due to disability expected to last for at least a year or to result in death.

Supplemental Security Income (SSI) – The Social Security Administration provides monthly cash benefits for people who have low incomes and meet certain age and disability guidelines. In most states, SSI also includes access to Medicaid.

Tethered cord – A condition in which the spinal cord gets stretched and damaged and often becomes entangled in scar tissue. The spinal cord, which normally floats free, may become caught by scar tissue or a small cyst. All children with a repaired myelomeningocele are at risk, but only a few develop symptoms. Symptoms usually appear during times of rapid growth and include worsening gait, rapidly worsening scoliosis, increasing incontinence, and pain. If you notice any of these problems, talk to your neurosurgeon.

Thoracic – Bones in the trunk area of the spine.

Ultrasound – A test that uses sound waves to picture structures inside the body, such as the kidneys. Ultrasound was used to picture your baby before birth.

Urethra – A small passageway in the body from the bladder to the outside in order to drain urine.

Urinalysis – A test to analyze the composition of urine.

Urinary incontinence – Inability to control the release of urine from the bladder.

Urinary tract – The kidneys, ureters, and bladder.

Urine culture – Test to see if bacteria is growing in the urine and which antibiotics would treat the infection. It takes 1-3 days to get the results.

Urodynamic testing – Medical tests done to find a problem with urine leakage or blocked urine flow.

Urologist – A doctor who specializes in the treatment and care of the urinary system. The primary concern of the urologist is to preserve kidney function. A urologist will order diagnostic tests, such as an intravenous pyelogram (IVP), and will prescribe an appropriate program for managing the urinary system. Your baby will always need to be under the care of a urologist or nephrologist to ensure that his or her kidneys are not in danger.

VCUG (Voiding Cystourethrogram) – This x-ray shows the form and function of the bladder, sphincters, and urethra.

Ventricles – Spaces deep inside the brain where cerebrospinal fluid is made.

Vertebra – One of the small bones that make up the spinal column.

Vertebrae – The bones around the spinal cord. All of these bones together form the spine.

Vesicostomy – An operation that allows the bladder to drain directly through an opening in the abdomen.

Vesicoureteral Reflux (VUR) – A condition in which abnormal flow of urine from the bladder backs up the ureters towards the kidneys. Normally, once urine enters the bladder, it should stay there and not go back towards the kidney. Some cases of reflux will get better on their own, while others may require surgery.