Intraventricular hemorrhage and long-term outcome in the premature infant.
Intraventricular hemorrhage (IVH) is the most common type of intracranial hemorrhage seen in the neonate. It is important not only because it is frequently seen in the high-risk nursery, but also because it can have serious neurological sequelae. Neurological sequelae are more common with higher grades of IVH. The incidence of IVH is inversely related to an infant's gestational age and birth weight while seventy is related to the concomitant seventy of the infant's respiratory distress.
In the late 1970's IVH was found in 34-49% of all premature births. Although the incidence of IVH has declined in recent years to 15-20% of premature births, the overall incidence of premature birth has increased and survival rates continue to increase, so IVH and its neurological sequelae will continue to be a problem.
This review article discusses the pathology, clinical features, grading, treatment, short and long-term outcomes and nursing implications of IVH. Selected studies from the literature regarding long-term outcome of IVH are also summarized.
Ninety percent of all hemorrhages occur between the first and fourth day of the infant's life, while 95% occur by day seven. There are several basic problems leading to the premature infant's predisposition to IVH. The first is the germinal matrix which is the most common area for hemorrhage to occur. This is a richly vascularized structure present in the premature infant in the subependymal region around the lateral ventricle at die level of the foramen of Monro and the head of the caudate nucleus. It is the site of production and early maturation of neuronal and glial precursors. Small, fragile immature vessels run through this jelly-like structure and are susceptible to rupture because of a lack of muscularis layer or support stroma. The vessels in this "capillary bed" do not resemble arterioles or venules and are sometimes classified as channels. They have been described as immature vascular structures turning into a real capillary bed only after the germinal matrix disappears. The germinal matrix is most pronounced at 23-24 weeks gestation. By 28-32 weeks gestation it becomes less prominent so that at term few germinal matrix vessels remain.
Cerebral blood flow is another factor contributing to IVH in the premature infant. The anterior arterial blood supply is derived from die internal carotid artery which further supplies the anterior and middle cerebral arteries. This rich arterial supply feeds into the "capillary bed" of the germinal matrix. The venous system drains blood from the matrix region and cerebral white matter, choroid plexus, striatum and thalamus through the medullary, choroidal, thalamostriate and terminal veins. Eventually these veins empty into the internal cerebral vein that joins the great cerebral vein of Galen. This venous network takes a sharp U-turn at the site of the germinal matrix. This may contribute to pathogenesis of IVH as venous congestion can easily occur in die fragile germinal matrix area.
Multiple systemic factors play a role in the pathogenesis of IVH. Some of die factors include:
* fluctuating cerebral blood flow seen with respiratory distress syndrome and ventilator support
* an increase in cerebral blood flow due to systemic hypertension, rapid volume expansion, hypercarbia, decreased hematocrit or decreased blood glucose
* an increase in cerebral venous pressure due to the labor and delivery process, respiratory distress or the normal venous anatomy as previously described
* decrease in cerebral blood flow due to systemic hypotension followed by reperfusion
* platelet and coagulation disturbances
Vascular factors may also contribute to IVH. Vascular factors include tenuous capillary integrity and vulnerability to hypoxic-ischemic injury and extravascular factors such as deficient vascular support, postnatal decrease in tissue pressure and fibrinolytic activity.
To summarize, clinical states predisposing the premature infant to IVH are situations that result in abnormal mean arterial pressure or abnormal intravascular pressure such as hypoxic events, patent ductus arteriosus, exchange transfusions, seizures, and/or pnuemothorax. These states impact on impaired autoregulation and the nature of the subependymal germinal matrix itself The baby most likely to have an IVH is under 32 weeks gestation with respiratory distress severe enough to require mechanical ventilation.(20)
Three clinical syndromes described with IVH are the catastrophic, saltatory and clinically silent syndromes The catastrophic syndrome evolves in minutes to hours. Signs of deterioration consist of change in level of consciousness to stupor or coma, hypoventilation or apnea, decerebrate posturing, fixed pupils and flaccid quadriparesis. The hematocrit may drop. Bulging of the anterior fontanel, hypotension, bradycardia, temperature instability and metabolic acidosis are also seen. The outcome is usually poor.
The saltatory syndrome presents more subtly with a slow onset that may evolve over hours to days. There is a gradual alteration in consciousness, a change in the quantity and quality of spontaneous movement, hypotonia, abnormal eye movements and occasionally respiratory changes. Although the outcome may be good, it depends on severity of the hemorrhage. The clinically silent syndrome presents with symptoms similar to the saltatory syndrome but the symptoms are more subtle and may be unnoticed. The most valuable sign in this case is an unexplained drop in hematocrit or the failure of the hematocrit to rise after a transfusion. An ultrasound of the head is useful at this point for screening and diagnosis.
Intraventricular hemorrhages are graded according to the amount of blood in the germinal matrix and lateral ventricles. Papile describes an IVH grade I as subependymal germinal matrix hemorrhage often located at the foramen of Monro with less than 10% of the ventricular area involved. A Grade II hemorrhage partially fills the lateral ventricles without ventricular enlargement; up to 50% of the ventricular area may be involved. In a Grade III hemorrhage, more than 50% of the ventricular area is filled with blood and the ventricles are enlarged. In a Grade IV hemorrhage, blood extends into the cerebral tissue itself. There is a controversy over pathogenesis of a grade IV intraventricular hemorrhage. A grade IV hemorrhage may be more than an extension of subependymal blood into the cerebral tissue. Volpe proposes additional factors in the mechanisms of brain injury in grade IV IVH. Preceding hypoxic-ischemic injury with a marked increase in intracranial pressure coinciding with defects in cerebral perfusion and venous congestion, periventricular hemorrhagic infarction or vasospasm and focal brain ischemia are thought to contribute to the hemorrhage pattern.(20)
The ultrasound scan of the neonatal cranium is the procedure of choice for diagnosing and grading IVH. High resolution imaging which provides clear pictures of all grades of hemorrhages, portable equipment which makes transport of fragile infants unnecessary, lack of radiation exposure and relative affordability are the main advantages to the ultrasound scans.
Prevention of IVH is the primary goal. The best way to prevent IVH is to prevent premature births. Since the pathogenic factors in the anatomy and vascular network of the germinal matrix are present in the preterm infant and cannot be altered after the premature birth, every effort should be made to keep the baby in-utero until term. Early detection of premature labor and tocolytic therapy have reduced premature births by 50%. Transportation of high-risk pregnant mothers to high-risk centers instead of transporting the premature infant after delivery also decreases the incidence of IVH by helping to reduce premature births and providing the infant with immediate expert care if premature birth cannot be avoided. Cesarean sections may play a role in preventing IVH. Long labors and breech deliveries can cause hypoxia, trauma and increased cerebral blood flow which could lead to IVH. In the United States, babies weighing less than 1800 gm at birth are usually screened for IVH.
Postnatal prevention includes careful management of cerebral hemodynamic disturbances. For example, fluctuating cerebral blood flow velocity in mechanically-ventilated infants should be prevented by muscle paralysis.
Nursing management is crucial for IVH prevention. Minimal handling and stimulation is important since disturbing these fragile infants who may have poor autoregulation can produce cerebral hemodynamic fluctuations which may cause RVH. Clustering of activities such as laboratory work, diagnostic testing, examinations, repositioning and suctioning is important. Suctioning techniques should include: 1) two people present for suctioning, 2) increasing the oxygen before suctioning, 3) avoiding prolonged suctioning and 4) avoiding overventilation to reduce the chances of pneumothorax. By maintaining a patent airway and monitoring p[O.sub.2] and p[CO.sub.2] with a transcutaneous monitor, nurses can help prevent respiratory distress syndrome. Respiratory distress syndrome can increase the infants chances for IVH as discussed earlier.
Volpe predicts mortality rates and incidence of progressive posthemorrhagic hydrocephalus based on severity of the hemorrhage (Table 1). Generally, the infant with a lower grade IVH has less mortality and less chance for ventricular dilation.
Table 2 provides information about major neurologic long-term outcome for IVH in terms of severity of bleed. Major neurological sequelae as defined by Volpe include hydrocephalus, spastic motor deficits (including cerebral palsy) and major cognitive deficits. Again, higher grade IVH is associated with a higher incidence of major neurological sequelae. Other sequelae include sensory deficits, language problems and seizures.
[TABULAR DATA NOT REPRODUCIBLE IN ASCII]
Hydrocephalus is usually an early onset-long-term outcome of IVH. As noted in Table 1, the incidence of hydrocephalus in grades III and IV IVH is high. IVH is the cause of hydrocephalus in about 90% of infants born before 32 weeks gestation. A common neurological sequelae that can be seen 1-3 weeks after the hemorrhage, hydrocephalus is defined as a progressive dilation of the ventricles caused by the production of cerebrospinal fluid (CSF) exceeding the absorption rate. This is communicating or nonobstructive hydrocephalus. The acute phase is usually due to fibrin plugging the arachnoid villi, hindering reabsorption of CSF. Chronic hydrocephalus develops due to inflammation with scarring of arachnoid villi and CSF pathways and persists beyond several weeks. Areas of obstructed CSF flow are the aqueduct of Sylvius, foramen of Monro, foramen of Luschka and foramen of Magendie. This is known as noncommunicating or obstructive hydrocephalus.
Treatment varies according to the type of hydrocephalus, acuity and infant's condition. In some cases, a slowly progressive ventricular dilation will spontaneously stop. No treatment is needed in this case. The ventricular dilation is observed with serial ultrasounds of the cranium. If the ventricles remain stable, the baby may be observed for as long as 18 months to assure late hydrocephalus has not developed.
Serial removal of blood and CSF through repeated lumbar or fontanel punctures maybe done for persistent slowly progressive ventricular enlargement. Sometimes a reservoir is inserted into the ventricle to facilitate the taps. Taps are done until the CSF becomes clear. If a shunt is placed before the fluid clears, there is a higher risk for infection and failure. When the fluid clears, the neurosurgeon may insert a ventriculoperitoneal shunt. Infants that are too in or too low weight for surgical placement of a ventriculoperitoneal shunt may benefit from external ventricular drainage. A ventriculoperitoneal shunt is inserted for rapidly progressive ventricular dilation that is unresponsive to other therapies.
Cerebral palsy (CP) is a generic term for a variety of disorders that affect a child's ability to move and maintain posture and balance. It is the most common long-term outcome of high grade IVH found in a pediatric neurology clinic. (Hydrocephalus may be the most common long-term outcome found in the neurosurgery clinic.) It is defined as a disorder of posture or movement which is persistent, but not necessarily unchanging, caused by a nonprogressive lesion of the brain. The diagnosis of CP usually can be made around 8 months of age. CP varies greatly in severity. In 1995, a study done by Crichton, Mackinnon and White notes the overall survival rate of persons with CP at 30 years of age was 87%. However, data indicate mental retardation and epilepsy have an adverse effect on this survival rate.
Pinto-Martin et al studied low birth weight babies at two years of age and found newborn cranial ultrasound findings of germinal matrix/intraventricular hemorrhage to be a significant risk factor for disabling CP. Disabling CP was defined as the inability to walk 5 steps unassisted, a Baley motor score greater than 1 standard deviation lower than performance score and a requirement for physical therapy or surgery for motor disorder, or using physical assistance devices. This group classified the ultrasounds as: 1) isolated germinal matrix/intraventricular hemorrhage (GM/IVH). 2) parenchymal echodensities/lucencies with or without GM/IVH and 3) ventricular enlargement with or without GM/IVH. They believe this categorization is more closely related to underlying pathology than Papille's classification. Nevertheless, GM/IVH had a sensitivity for predicting disabling CP 61% of the time in this study.
The characteristics of CP consist of excessive tone, low tone or fluctuating tone. Children with excessive tone demonstrate spasticity, hypertonia and stiffness, especially in their legs. These babies may scissor their legs tightly together or stand on their toes when held upright. The low tone infants are floppy. They have difficulty supporting themselves. They may sit forward with a rounded back, affecting their ability to use their arms for reaching and grasping. It may also affect their speech if the low tone affects the respiratory and abdominal muscles. Children with fluctuating tone have a combination of high and low muscle tone. They may have low tone at rest and high, spastic tone when trying to perform an activity. Fluctuating tone is a symptom of basal ganglia problems.
The literature gives us several classifications of CP. Swaiman emphasizes a clinical classification of cerebral palsy syndromes: spastic hemiplegia, spastic quadriplegia, spastic diplegia, extrapyramidal cerebral palsy, atonic (hypotonic) cerebral palsy, ataxic cerebral palsy and mixed cerebral palsy.
CP is also classified based on the clinical location of the motor problems. Diplegia, the most common in this classification, means the legs are most affected. There is always some arm involvement, however, so occupational therapists as well as physical therapists should be involved with the treatment of children affected with diplegia. Monoplegia means one limb, arm or leg, is affected. This is a rare type of CP. Hemiplegia indicates one side of the body is affected. Quadriplegia means the whole body, face, arms, legs and trunk, are affected. in quadriplegia the legs and arms tend to be equally involved. There are frequently oral motor problems. if the whole body is affected but the upper extremities are affected more than the legs it is called double hemiplegia.
A clearer classification for CP, proposed by Gash, is based on location of the brain injury: pyramidal (spastic) cerebral palsy, extra-pyramidal (choreo-athetoid and ataxic) cerebral palsy and mixed cerebral palsy. Pyramidal CP, the most common type, denotes injury to the motor cortex and the pyramidal tracts. The pyramidal tracts are the pathways that link the motor cortex with the motor signal relaying nerves in the spinal cord. Symptoms of pyramidal CP include one or more tight (spastic) muscle groups with weakness in the opposite muscle group. Thus, if the upper extremities prefer to remain flexed, the flexor muscles in the upper extremities are tight and the extensor muscles in the upper extremities are weak. This usually results in limited movement and joint contractures. Children with pyramidal CP may also have exaggerated tendon reflexes (a stronger, faster than normal jerk); ankle clonus (rapid and rhythmic contractions in the calf and foot muscles when the leg is quickly stretched by flexing and holding the foot upward); a positive Babinski which is abnormal in children over 1 year of age (toes extend and fan out when the bottom of the foot is stroked from heel to toe); and persistent primitive reflexes.
Primitive reflexes include the Moro reflex or startle reflex demonstrated by the baby's arms and legs extending straight out with the hips flexed in response to something like a sudden shift in position or loud noise. The Moro reflex usually disappears by 4-6 months of age. The tonic neck reflex or fencing pose, another primitive reflex, is noted when the baby's head is rotated to one side and the arm and leg on the same side as the face extend out while those on the opposite side are flexed. This usually is gone by 6 months of age. Another primitive reflex, neck righting, usually gone by 8-10 months, is manifested when the head is turned to one side and the shoulder and trunk also rotate to the same side when the baby is supine.
Extrapyramidal CP is caused by damage to the areas that usually process signals from the motor cortex, the basal ganglia and/or the cerebellum. Symptoms of extrapyramidal CP include involuntary, purposeless movements especially in the face, arms or trunk that interfere with speaking, feeding or grasping. For example, involuntary grimacing or tongue thrusting may lead to feeding or swallowing problems, drooling or slurred speech. Types of involuntary movements include:
* dystonia -- slow, rhythmic twisting movements of the trunk or entire arm or leg
* athetosis -- slow, writhing movements especially in the wrists, fingers and face
* chorea -- quick, jerky movements of the head, neck, arms or legs
Dystonia, athetosis and chorea are seen in children with basal ganglia problems. Altaxia, an unsteadiness or lack of coordination and hypotonia are seen with cerebellar problems.
Mixed CP has both spasticity and involuntary movements. This is a more severe type of CP. In this form there is more diffuse brain injury to both pyramidal and extrapyramidal areas.
Cognitive deficits may be associated with IVH. Cognitive deficits are often separated into three distinct areas: 1) mental retardation, 2) attention deficit/hyperactivity disorder and 3) learning problems. There are two aspects to mental retardation. One is the intelligence quotient (IQ), the measure of ability to reason, conceptualize, solve problems and think on standardized testing. A child with an IQ below 70 is considered retarded in terms of learning capacity. This child may still be able to learn but will learn at a slower pace than most. An equally important aspect of mental retardation is the child's adaptive skills. This means the ability to manage common daily activities (ADLs) like eating, bathing or dressing and also includes socially appropriate behavior. It is tested by a variety of standardized adaptive scales. Both the IQ and the child's adaptive level need to be considered when evaluating a child for mental retardation.
Attention deficit hyperactivity disorder (ADHD) is characterized by distractibility, difficulty concentrating and impulsiveness. Children with ADHD may also have labile emotions and frequent mood swings. They may have problems with social adjustments, academics and self-esteem. Children with normal intelligence but difficulty processing certain types of information are sometimes diagnosed as having learning problems. The learning problem may be the result of a visual-perceptual disorder or a developmental language disorder.[7,10,18]
In 1991, Selzer, Lindgren and Blackman did a study involving 20 high-risk infants with IVH, 20 high-risk infants without IVH and 70 control infants. The infants were considered high-risk if they had any of the following conditions: 1) birth weight under 1,500 grams, 2) respiratory distress syndrome, 3) bacterial meningitis, 4) asphyxia neonatorum, 5) hypoglycemia, 6) seizures, 7) hypotonia, 8) ventilatory assistance for at least 2 hours and 9) other significant perinatal problems such as hyperbilirubinemia, intrauterine growth retardation, or severe psychosocial difficulties. They did not specify the grade of IVH. The control group had no history of perinatal or chronic health problems. They were demographically matched with the high-risk group. At 5 years of age the children were given a comprehensive neuropsychological evaluation involving verbal, perceptual-motor and preacademic ability. Both high-risk groups performed lower on all skills, with the children having IVH falling the lowest. This suggests that infants with IVH are at greater risk for neuropsychological deficits at 5 years of age.
A more recent study involved 114 low birthweight infants at age 2 years; 27% of the children with severe IVH (grades III, IV) developed severe disabilities. The Griffiths' Mental Developmental Scale was used to evaluate cognitive status, where developmental quotient over 85 is considered normal. This study defined severe disability as having one or more of the following problems: severe CP (most likely to remain nonambulatory), bilateral blindness or developmental quotient less than 70. Although more studies are needed in this area, there seems to be a correlation between learning problems, attention deficit hyperactivity disorders and IVH.
Sensory deficits may also be associated with IVH. Visual impairments involving eye muscle imbalance including strabismus and amblyopia or cortical blindness (partial or total vision loss due to brain injury in the visual centers of the cerebral cortex) may be longterm outcomes of IVH. Abnormal eye movements such as nystagmus or roving eye movements may also be noted in infants with IVH.
In 1993, King and Cronin retrospectively compared ocular findings of 13 premature infants with grade IV IVH to 11 premature infants without IVH. The infants' eyes were examined in the neonatal unit 8 weeks after birth. Eye exams were performed at intervals until the children were 3-7 years old. They found a 92% incidence of ocular problems in children with IVH compared to 72% in premature infants without IVH. The severity of the eye problems was also greater m the infants with IVH. Retinopathy of prematurity (ROP) resulted in severe visual deficits in 2 out of 3 of the infants with IVH compared to recovery from ROP with good visual outcome in the 4 premature infants without IVH. Severe visual loss was noted in 5 of the children with IVH and none of the children without IVH. Although the numbers were small in this study, the literature confirmed their findings, indicating a need for children with IVH to have visual exams at regular intervals.
Sensorineural hearing loss due to damage to the inner ear or auditory nerve, usually because of antibiotic treatment or jaundice, is also often seen in children with IVH. Premature infants often have had histories of infections requiring antibiotics that may produce auditory toxicity. jaundice, which also can affect the hearing, is often a problem for premature infants due to excessive red blood cell destruction. Other sensory impairments frequently associated with IVH include problems handling information relayed to the brain from the senses (agnosia), abnormal sensitivity to being touched (tactile hypersensitivity), appearing to be insensitive to pain (tactile hyposensitivity), position (proprioception), movement vestibular) and balance problems and dyspraxia. Dyspraxia is characterized by difficulty using the senses to help plan movements. For example, when a child with dyspraxia tries to put on clothes; he/she has to do each movement involved separately, taking time in between to plan the next move. This makes dressing a time consuming and often labor intensive activity.
Two types of language problems can occur following IVH. Receptive language problems can occur when the child has difficulty with understanding and remembering words, gestures or symbols. Expressive language has to do with the child's ability to communicate using words, gestures and written symbols. Communication difficulties may be due to oral-motor deficits. The tongue, jaw, lips, facial and respiratory muscles are all needed to produce speech. If the child has dyskinesia, hypertonia or hypotonia, the muscles needed for speech may be involved making it difficult for the child to form the words with his/her mouth.
Language has been an area of controversy. Some studies suggest language is more an environmental outcome than a result of IVH. Lewis and Bendersky studied 32 low birth weight infants at 2 years of age in 1989 and found the infants with IVH had poorer performances on the mental developmental index, psychomotor development index and communication quotient. When medical complications and socioeconomic status factors (SES) were statistically removed, the infants with IVH were still lower on cognitive and motor development but language ability was found not to be related to RVH.
In 1995, Lewis and Bendersky validated their 1989 findings by studying 105 premature infants at 3 years of age. They again found IVH to be more related to motor impairments which makes sense since the anatomical locus of trauma in IVH is adjacent to the motor tracts overlying the caudate nucleus and basal ganglia. Medical complications and SES were found to be more related to abstract visual thinking and SES was related to language abilities.
Seizures are the clinical manifestations of abnormal neuronal activity in the brain. They result from paroxysmal, disorderly firing of neurons with spread through the brain. Residual brain scarring from the IVH may provide a focus for the abnormal discharges. Depending on die location of origin of abnormal impulses, seizures may appear in many different ways. Eye blinking, hp smacking, jerking or stiffening of extremities may all be signs of seizure activity. One study noted a correlation between major disabilities and two perinatal factors: IVH and neonatal seizures. Parents should be educated about the possibility of seizures occurring m their infants with IVH so they can know what they are observing and seek prompt treatment for their infants.
Infantile spasms is an epileptic syndrome usually seen around 6-9 months of age and characterized by multiple, brief rapid jerks of the entire body which may be followed by a cry. They are frequently related to IVH and may be an ominous sign of more devastating neurological sequelae to follow such as, severe mental and motor developmental delays. Infantile spasms should be treated promptly so parents need to be especially aware of this syndrome.
Factors Affecting Long-Term Outcome
The primary indicator of a baby's outcome after an intraventricular hemorrhage is the grade of IVH. Although there are exceptions, the more severe the hemorrhage or the greater the grade of IVH, the more devastating long-term outcomes will be. There are several other factors, however, that also influence long-term outcomes.
Socioeconomic status (SES) factors such as maternal/parent education, family occupation, availability of a car or phone, involvement of a male figure in the family and use of public aid are used to evaluate environmental factors that may affect a child's developmental progress.(3) It has been said that the level of the neonatal illness affects the outcome and the parental education and child's environment influences the severity of the problem. Some studies have indicated that child-related parenting stress was not always associated with the severity of the child's medical condition. Sometimes it was more related to demographic disadvantages and high parent-related stress. We can also refer back to Lewis and Bendersky's work noting the influence SES has on the child's language development.[9,10] While the severity of IVH affects the physiological long-term outcome of the child, the SES influences the parents' ability to cope with the problems and provide the services that will help the child meet his/her individual potential.
The additional medical problems of the infant also affect long-term outcome. Continued cardiac, respiratory or systemic disorders will influence any baby's developmental progress. The premature infant with IVH is even more vulnerable to such biological factors.
There recently has been some discussion about genetic influence on a child's long-term outcome. Aylward notes findings from The Texas Adoption Project. The project's findings indicate environment influences the child's early development but has decreasing influence as the child becomes an adolescent. A decline in intelligence quotient scores in late childhood seems to reflect die influence of genetic factors rather than the negative environmental influence according to die project's investigators. SES and biological problems may be reflected in a child's early developmental difficulties, But as a child grows into adolescence the genetic component expresses itself. There is believed to be a unique developmental limit that exists for each individual that is the result of SES, biological and genetic factors.
Another factor to consider when projecting long-term outcomes and interventions in premature infants with IVH is the type of screening test that is being used to determine the child's risk for developmental delay or neurological impairments. The instrument is useful only if it is testing what the investigator believes it to be testing. The Baley Infant Neurodevelopmental Screen (BINS) developed by Glen P. Aylward, PhD is a tool that can be used by pediatric nurse practitioners, pediatricians, developmental psychologists, occupational therapists, physical therapists, child developmental specialists, school and clinical psychologists and other professionals trained in early childhood assessment to assess neurobehavioral development risks. It assesses neurological, receptive, expressive and cognitive functions in infants and children ranging from 3-24 months. Assessment of posture, tone, movement and cognitive delays can be done in a brief, succinct manner. From this tool we can learn the deficits, the magnitude of the problem and the service needs. Findings from the BINS tell us if the infant or child needs a referral to such resources as neurology, occupational therapy, physical therapy or audiology, to name a few. It does not place the child in any specific age group or tell us what specifically is wrong with the child.
Children with IVH may be difficult to parent for many reasons. If the infant has complications from the IVH, the parents may need to go through an adjustment period. They will need to grieve for the healthy baby they thought they were going to have. Shock, denial, grief, guilt, anger and resentment are emotions they may feel especially if the child is affected with serious long-term problems. Once they become adjusted to their child's disabilities, parents may have to deal with a baby that is hard to feed, irritable and not- easily soothed. High-risk infants, which would include many babies with IVH, have a higher incidence of child abuse than the general population. As children with IVH grow older and enter the school system, parents may discover their child has difficulty with learning and behavior. In addition to the long-term problems discussed in this article, many children with IVH have numerous ongoing medical problems that further add to parents' stress. Another consideration is the expense involved in taking care of children with multiple medical, cognitive and developmental problems.
Siblings must be considered when discussing long-term outcomes of IVH. The siblings of infants with long-term problems from IVH may face special opportunities and challenges that other children do not have. There is the opportunity for growth, compassion, understanding and developing a great capacity for love, but there also may be problems with isolation, resentment, embarrassment and the burden of caregiving. The sibling is likely the person who will have the longest lasting relationship with the child with special needs and special care must be taken to help make this a good relationship. Often the nurse can provide insight and advice for parents regarding the siblings and their special needs brother or sister. Special attention to siblings during office visits and hospitalizations may be helpful. The nurse can address the siblings and spend a few moments with them. Answering questions and listening to concerns may calm anxious brothers and sisters and help them feel a part of the family.
Sibling workshops across the country provide an opportunity for brothers and sisters of children with special needs to meet in a casual atmosphere and get to know other siblings of special needs children. The workshops promote informal sharing and friendships and may be helpful to the brothers and sisters of infants and children with IVH resulting in long-term problems.
Parent education is a great need of families of children with IVH. Starting from the high-risk nursery and carrying over to the neurosurgeon's and neurologist's office, the nurses must be aware of the family's educational needs. Parents need to know about normal developmental milestones. They may not be able to tell if their child with IVH is developing on target if they do not know what is expected. This is especially true for first-time parents.
Observing for sensory deficits, especially visual and hearing problems, is important for the parents to learn. If a child does not respond to noises or doesn't appear to be tracking, parents are usually the first to notice, but may be unaware of either the importance of the situation or what to do about it. If they have been taught that these problems may occur, they may be more confident and prompt in reporting their observations to the pediatrician who can make the proper referrals.
Long-term follow-up with various specialties is often required for infants with IVH. Nurses can facilitate and coordinate appointments for therapies, orthopedics, neurology, ophthalmology or neurosurgery in addition to educating parents regarding the purpose and need for such services.
As mentioned earlier, children with IVH may develop seizure disorders. Anticipatory guidance regarding what seizures look like, seizure first aid and the importance of reporting seizures as soon as they occur needs to be given to the parents.
Families also need to be prepared for how difficult some of these infants and children may be to parent. Parent support groups are helpful when parents experience infants that are hard to feed, to comfort and require more time, money and patience than the parents feel they have. The support groups are also helpful when the child becomes of school age and has difficulty with learning and behavior. It can be very beneficial to talk with someone who is in a similar situation and find out how they are coping and what resources are available in the community.
Providing information to parents by anticipating and answering questions is important. Issues they may want addressed are often quality of life concerns, expenses and the extent of the infant's disabilities. Parents ask questions like: Will my child walk? Will my child go to school? How will I be able to care for my child physically and financially? There may not be answers for all of the questions in the beginning, hut the nurse must try to address the families' issues of concern in a compassionate and empathetic manner.
In a recent study involving 128 mother-father couples parents were asked to rate by importance 5 aspects of caregiving by professionals. The aspects were: 1) enabling and partnership, 2) providing general information, 3) providing specific information, 4) coordinated and comprehensive care and 5) respectful and supportive care. Both mothers and fathers rated enabling and partnership as the most important aspect of caregiving.(9) We can enable or empower the parents of infants with IVH by giving them the information they need to make decisions regarding care and services for their infants and children.
As children with IVH are seen in outpatient clinics for follow-up care, nurses should assess for signs and symptoms of long-term complications. Neurological exams should be done on all children. This would include assessment of cranial nerves, reflexes, motor skills, intelligence and level of alertness, cerebellar and sensory function. A history from the parents should include questions about their child's developmental milestones, school performance and any possible seizure activity. Vision and hearing screening tests should also be done.
The infant neurologic examination includes assessment of the baby's general appearance, position, activity, alertness and cry. Motor function is determined by looking at range of motion for each major joint. Normal muscle tone can be assessed and the examiner can also tell if spasticity or flaccidity are present by putting the extremities through range of motion tests. The sensory examination can be done by assessing the infant's response to touch. When testing cranial nerves on infants some adjustments must be made. Reflexes are variable in infancy. Exaggerated reflexes or absent reflexes may not be significant. Primitive reflexes or infantile automatisms, discussed earlier in this article also need to be assessed. Reflexes such as palmar grasp, rooting reflex, trunk incurvation, Moro response and vertical suspension positioning usually disappear between 2-6 months. Persistent primitive reflexes may interfere with normal development.
Recovery from IVH requires a nurturing environment and caregivers who understand the infant's needs and have the skills to help the infant reach its full potential. Awareness of possible long-term affects of IVH can lead to better observations of infants with IVH in follow-up clinics and early referrals to intervention programs and other social agencies. More longitudinal studies with larger numbers are needed to help further predict outcome in IVH and thereby develop long-term programs to help the children with IVH maximize their abilities.
[1.] Aylward G: Baley Infant Neurodevelopment Screener Manual. The Psychological Corporation, 1995.
[2.] Aylward G: Environmental risk, intervention and developmental outcome. Ambulatory Child Health, 1996; 2:161-170.
[3.] Aylward G: Outcome of the high-risk infant. Pages 15-28 in: Developmental Behavioral Disorders, 1st edition, Gottlieb M, Williams J (editors). Plenum Medical Book Company, 1989.
[4.] Brown J, LaRossa M, Aylward G, Davis D, Rutherford P, Bakeman R: Nursery-based intervention with prematurely born babies and their mothers: Are there effects? J Pediatrics 1980; 97(3):487-491.
[5.] Crichton JU, Mackinnon M, White CP: The life expectancy of persons with cerebral palsy. Devel Med Child Neurol 1995; 37:567-576.
[6.] Fernell E, Hagberg G, Hagberg B: Infantile hydrocephalus in preterm, low-birth-weight infants -- a nationwide Swedish cohort study 1979-1988. Acta Paediatr 1993; (82):4548.
[7.] Gash E: What is cerebral palsy? Pages 1-32 in: Children with Cerebral Palsy, 1st edition, Geralis E (editor). Woodbine House, 1991.
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|Publication:||Journal of Neuroscience Nursing|
|Date:||Oct 1, 1997|
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