Brief Definitions

Bronchopulmonary dysplasia (BPD) - the most frequently diagnosed chronic lung syndrome in preterm infants.  BPD is most often defined by the number of days of supplemental oxygen required and representative x-ray findings.  For a detailed discussion of BPD, refer to FOR PARENTS OF PREEMIES, a guide prepared by the University of Wisconsin and the Center for Perinatal Care at Meriter Hospital.

Cerebral Palsy - a diagnosis that there has been some injury to the brain during development which has resulted in difficulty transmitting the necessary impulses from the brain to the muscles for coordinated movement.  For a diagnosis of CP, the following are necessary: 1) motor skills must be adversely affected,   2) the motor impairment has to be due to a neurological injury,  3) the injury or lesion must be static (not getting worse, but no longer resolving),  4) the injury has to occur while the motor system is still developing (usually before, during, or right after birth), and  5) the impairment in movement does not resolve with time.  For a more complete discussion of motor problems in the preterm infant, see http://www.comeunity.com/disability/cerebral_palsy/cerebral palsy.html.

Disability - refers to any restriction or lack of ability to perform an activity in the manner or within the range considered normal. ( Note - "Disability" is defined by specific criteria for purposes of eligibility in various different program.  It is possible to meet the criteria for "disability" under one program and not under another.)  Click here for examples of how disability, impairment and handicap differ.

Handicap -  a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.  Click here for examples of how disability, impairment and handicap differ.

High-Risk - is used to refer to a group with an increased statistical probability of developing a condition.   Certain medical complications increase the likelihood of a child having developmental difficulties.  That is, a child with one or more of these medical complications is more likely to have some developmental difficulty than children without medical complications.  When a child’s chances of developing any problem are increased, they are said to be at higher "risk" for this problem.  Children are identified as being at "high-risk" for developmental difficulties if they experience problems before, during, or after birth that are known to be associated with developmental problems.

Hyperextension and stiffness of the lower extremities - refers to a straightening with tightness or resistance to movement of the ankles, knees and/or hips.  (When you try to move your child’s legs it feels as though she is always fighting against you.  In other words, it is hard to bend or flex your child’s ankles, knees or hips.)  The child may frequently hold the legs extended (straight), or may go up on the toes when held in a standing position.  Some children who were born prematurely have tightness of the lower extremities early in the first year of life that gradually disappears.  For some children, physical therapy may be recommended.  These early motor difficulties resolve by eighteen months corrected age for most children.  For a small number of children the tightness does not go away and is a sign of a more serious motor problem.

IEP (Individualized Education Plan) -  is the tool used by the public school system to guide a child’s educational program.  It is developed by the parents and the school system.  The IEP differs from the IFSP in that its focus is the educational needs of the child.  The goals and objectives stated in the IEP should focus on offsetting or reducing the problems resulting from the child’s disability that interfere with learning and educational performance.  A child will not be placed in a public school special education program until the IEP is in place.

IFSP (Individualized Family Service Plan) - refers both to a process and a written document.  The process starts at the time of a referral to Early Intervention (Babies Can’t Wait in Georgia) and includes many of the activities that must take place in order to write the document.  At the meeting during which the IFSP is written, the parents, other involved individuals ( therapists, psychologists, social workers, etc.) and the Babies Can’t Wait (BCW) Service Coordinator will work together to identify a child’s strengths and weaknesses and make plans to bring into use appropriate activities and interventions that will help a child progress toward desired outcomes.  The IFSP is to be in place 45 days after the BCW referral.   The IFSP is reviewed and updated at least every 6 months, but it can be changed whenever the family or the team feels it is necessary.  Services through BCW cannot be provided until an IFSP is in place.  In order for a servce to be coverered under the BCW program, it must be included in the IFSP.

Impairment - is a term used when there is any loss or abnormality of psychological, physiological, or anatomical structure or function.  (Note:  an impairment does not necessarily result in a "disability" or "handicap" -- click here for examples.)

Inclusion - this is a term used to describe programs where children with disabilities are "included" in regular programs alongside their typical same aged peers.

Intraventricular hemorrhage (IVH) - the most common form of brain bleed in preterm infants. "Intraventricular" refers to the area of the brain lining the ventricular system.  (click here for an article on IVH)

Learning Disability - refers to a significant difficulty in learning which is presumed to have its origin in central nervous system dysfunction.  The learning difficulty may be in a very specific area, including acquisition and use of listening, speaking, reading, writing, spelling, reasoning, memory or mathematical abilities, or it may involve difficulty in some combination of these areas.  Social skills and/or self-regulatory behaviors (e.g., attention) may also be impaired.  For more information on learning disabilities, see http://novel.nifl.gov/nalld/insert.htm

Mental Retardation - Mental retardation refers to an impairment in general intellectual functioning, together with global deficits in other life skills, which must develop before age 18.  There is a very wide range of functioning for people with different levels of mental retardation.  Prematurity is NOT a major cause of mental retardation, but children born extremely premature are much more likely to develop mental retardation than children born healthy at term.  Several conditions associated with prematurity increase a child’s risk for mental retardation.  These include neurological injury (e.g., intraventricular or periventricular hemorrhage, hypoxic injury around the time of birth) and various early infections.  Children with early developmental delay are considered "at risk" for mental retardation, but the diagnosis of mental retardation is not appropriate unless and until it becomes apparent that the child will not fully recover from the delay in development.

Necrotizing Enterocolitis(NEC) - is a disorder characterized by necrosis (death) of areas of the intestine.  Neither the exact predisposing causes nor the mechanisms involved in its development are known.  There are many factors thought to play a role in the development of NEC.  Two examples of these factors are: a decrease in blood flow to the intestinal tract and infection.  The very small and asphyxiated preterm is at greatest risk of developing NEC.  However, it has been diagnosed in full-term and small for gestational age babies.  Depending on severity, treatment includes a spectrum from resting the intestine and administering antibiotics, to surgical intervention.  See the NEC page on the FOR PARENTS OF PREEMIES website for further information on NEC.

Periventricular Leukomalacia (PVL) - cell death of the white matter behind and to the side of the lateral venticals resulting from insufficient oxygen to that part of the brain.  See the PVL  page on the FOR PARENTS OF PREEMIES website for further information on PVL.

Retinopathy of Prematurity (ROP) - a condition in which the blood vessels in the retina develop abnormally.  ROP is most common in babies born more than 12 weeks early.  The growth of blood vessels in the retina is normally completed just a few weeks before full-term delivery, and when babies are born before this process is complete, the blood vessels may grow and branch abnormally, sometimes causing the inner lining of the retina to be pulled away from the outer lining.  For additional information, follow this link:  ROP

Shoulder Retraction - describes the placement of a child's shoulders drawn back with the elbows bent, and hands held up by the shoulders.  This is a commonly preferred position seen in children with respiratory problems.  This position helps the child to expand the chest in an attempt to take in more air.  This can interfere with the use of her hands for exploration.  It may also slow down exploration of toys and developing an interest in reaching.  In addition, shoulder retractions can cause a child to arch back slightly when placed in an upright position, which can interfere with balance for sitting and standing.

Transition - refers to movement or change from one condition, place, or activity to another.  "Transition" is often used to describe the process involved as a child moves from the Babies Can't Wait system at age 3 years to the next appropriate education program (public schools, pre-K programs, private child development or kindergarten programs, etc).

Weak Tone or Low Tone - is a term used to describe an infant or young child who offers very little resistance against you when you move the ankles, knees and/or hips, the baby  feels too "loose." Generally the child displays no abnormal movement patterns, yet cannot yet sit independently or push up on her hands and knees in a crawling position for more than a few seconds without collapsing down onto her belly.