Читать книгу Losing Patience - James Peinkofer - Страница 14
ОглавлениеATTENTION PROBLEMS
Because the brain has some resiliency in response to traumatic injury, there are children who experience minimal after-effects following an incident of shaking. One such effect might be an Attention Deficit Disorder (ADD) with or without hyperactivity. With an attention disorder, children may appear to ignore what a parent or caregiver is saying to them. They may also be easily distracted and need careful monitoring and clear instructions on adult expectations.
Certain stimulant medications can help a child experiencing attention problems to focus by counterbalancing the overproduced stimulating chemicals of the brain. Parents and caregivers should consult their physicians to discuss behavioral or medical options to assist with their child’s needs. Before a diagnosis of ADD is formally made, the child should also receive psychological testing and evaluation. School personnel should be made aware if a child is diagnosed with ADD, so that special programs or consideration can be arranged.
BALANCE PROBLEMS
Balance is controlled by three areas of the body’s nervous system—the basal ganglia, the cerebellum and the inner ear (fluid in the eustachian tubes of the ears maintains a consistent level for balance to effectively occur). Damage to any of these areas may result in poor balance. When a balance problem primarily stems from the inner ear, masking agents—such as a device that produces “white noise”—can assist in maintaining balance and coordination.
Physical and occupational therapy can help correct deficits in a child’s balance. These deficits may cause a child to have difficulty standing or walking in an uncontrolled way. Coordination therapies and strengthening therapies can allow for smoother mobility.
BLINDNESS
Many types of visual deficits may develop as a result of SBS. Retinal hemorrhaging may resolve without any lasting ill effects, but may also leave permanent scarring with partial or complete blindness.
Cortical blindness relates to injuries in the cortex of the brain. Cortical trauma results from any type of brain injury, including contusion, edema or hemorrhage. The eye and optic nerves are functional, yet the brain’s cortex is unable to effectively process visual information. There are several types of visual deficits that may result from cortical injury, such as gaze disorder (strabismus), visual field defects or total blindness.
Cortical injury usually results in severe loss of vision. Any injury to the occipital region of the brain may threaten vision, because this is the area that controls that function. Visual deficits may also occur in conjunction with other disabilities, such as cerebral palsy (CP), wherein a child is more likely to experience optic atrophy, lazy eye (amblyopia) or eye jerks (nystagmus).
Children affected by visual disability or blindness caused by SBS will benefit from regular visits to an ophthalmologist who is experienced in the area of ocular injuries resulting from child abuse.
CEREBRAL PALSY (CP)
This condition identifies a group of disorders that affect a child’s motor skills, such as the ability to perform and control normal movements. Poor balance, weakness, stiffness and lack of coordination are all aspects of CP.
A child may be affected on different sides or various parts of his or her body. Hemiplegia is CP that affects an arm and leg on one side of the body, diplegia affects both legs and quadriplegia affects all four limbs. These are all considered “pyramidal” (spastic) CP as the pyramidal tract of the brain is often affected. Muscle control may be spastic (rigid movement), hypotonic (floppy movement) or ataxic (poor balance and coordination).
Extrapyramidal CP occurs when there is damage to the basal ganglia section of the brain. Muscle control will be athetoid (no control) where the limbs move in an abrupt and involuntary fashion. The majority of children diagnosed with extrapyramidal CP have a concurrent diagnosis of being mentally handicapped.
CP in infants and toddlers is diagnosed after certain developmental milestones fail to be met and there is abnormal muscle tone and abnormal movement. There is no exact measurement that can predict the eventual severity of the effects of CP, though by age two a child can be diagnosed as hemiplegic, diplegic or quadriplegic.
Parents and other caregivers are encouraged to allow the infant or toddler to socialize with other children, especially other children with disabilities, because this will emotionally support the child’s instinctual need for independence from within a largely dependent body.
DEAFNESS
Children who are shaken may suffer damage to the eighth cranial nerve, which controls hearing. Damage may also affect the bones of the inner ear and the cochlea, which converts sounds from mechanical impulses to chemical and electrical impulses sent to the brain.
Children’s hearing may be tested with an audiology follow-up. Deficits in hearing range from a mild impairment to profound deafness. Children may be left with some residual hearing that may be amplified with the assistance of a hearing aid.
Regular visits to an audiologist and speech therapist will help these children who are deafened from shaking to make the most of this particular disability.
DEATH
Death in SBS most commonly occurs as a result of cerebral edema and/or hemorrhaging with resulting uncontrolled increase of intracranial pressure. Children under the age of six months have a greater risk of dying as a result of being shaken and overall, infants and young children have a 20 to 25 percent chance of dying after a shaking incident.
There are also children who suffer a “late death.” These are children who have suffered massive brain injury and die years later, such as a child with only brain stem function which ceases. Or a child who succumbs to increased intracranial pressure and a shunt that can no longer support her neurological changes. Or the child who dies from pneumonia after living with devastating neurological damage for twelve years from being shaken at five months. The outcome for shaken infants is something that can never be predicted. There are children who are expected to live, expected to die, make recoveries that are called “miracles” and others whose young bodies cannot take the trauma of living with their injuries. Providing a hopeful, loving environment is the best any caregiver can give, no matter the days, months or years.
EMOTIONAL PROBLEMS
A subtle complication of SBS is a child who experiences subsequent emotional problems. This is subtle because of the fact that it is one category where a shaking incident may never be discovered or diagnosed. There are children who are shaken, become unconscious, may experience lethargy or vomiting and then recover. Years later, subtle complications will be present without parents or caregivers knowing the basis for such complications. Emotional problems might range from explosive anger to self-injurious behavior to depression. Later in life, a child who has been shaken may develop an attachment disorder. Psychiatric evaluation and treatment may be needed as a shaken child grows.
The harmful effects of abuse can be lessened. Loving family members offer structure and guidance to a child whose basic trust issues were dramatically altered. Parents and caregivers should watch for changes in their children. Therapists and other mental health professionals can help with understanding emotional problems and guide with treatment options.
A Behavioral Issue
My son was three months old and suffered subdural hematomas, seizures, retinal hemorrhages and buckle fractures in both legs. He was misdiagnosed with spinal meningitis for two days before he was transferred to a hospital in Springfield, Illinois. There, he underwent a full body scan and MRI, which showed bleeding in his brain and behind his eyes. I wasn’t given this information at the first hospital. I told the nurses that he wasn’t looking at me and I was told that it was because of the medication.
I found out at the Springfield hospital that he was blind, because of the bleeding behind his eyes. The next day the Department of Children and Family Services (DCFS) arrived with the Springfield police, accusing me of hurting my baby. Alone and scared and being threatened with having my baby taken away was the worst feeling ever, because I knew I didn’t hurt my child. He spent two weeks in the hospital.
I figured out a male friend of mine was responsible for the abuse of my baby. I had to take a lie detector test to prove I had nothing to do with the abuse. The DCFS worker did a home visit and after getting my results I was cleared. She went to the state police to get something done. She fought to have the person responsible brought to justice and we were finally close to an arrest. But that was only the beginning.
I moved nearer to my family, where there were people I knew I could trust. My son had a neurologist, an ophthalmologist and physical and speech therapy, so we were busy. At five months, he had to have surgery to relieve pressure on his brain due to “slow bleeders” from being shaken two months earlier. Then he spent another two weeks in the ICU with more therapy and weekly CT scans in Chicago (two hours away).
My son made great strides, but there were developmental delays which led to special education classes beginning in preschool. He also had sensory and behavioral issues, which resulted in him getting kicked out of not one school in first grade, but three. School through high school was rough for him, but he now has a community job at one school. He asked for a job, brought his résumé and they found a place for him. He now works ten hours a week and it has been a perfect job match. My son wants to drive but can’t, because he has a visual impairment and a seizure disorder.
My son has big dreams of getting a college degree but won’t be able to take collage classes, because he functions academically at a third grade level. He wants to get married, because he told me, “I don’t want to die alone.” I hope someday he can find that special someone. As I look back on what happened to my child, I realize all the hopes and dreams you had for your baby can be taken away in seconds at the hands of another person.
My son asked why he couldn’t see very well when he was around ten. I told him he was a survivor of SBS. He got angry and blamed me for going to work that day. It was one of many days that I cried. The guilt and anger have not gone away in twenty-two years. Everyone says you need to forgive, but that hasn’t happened yet and I don’t think it ever will.
One day he and my grandson were watching a television program. My grandson asked him why he had to sit so close to the TV. My son told him it was because a man shook him and then said, “When I get older we are going to find him, because he needs to pay.” That was another day I cried. I wish the court system felt the same way.
The person who hurt my baby did get six years in prison, but only after I gave my victim impact statement. They wanted to give him six months with time served. Someone from the state’s attorney office alerted the media to the plea bargain. I talked to the media about not being happy with the plea. Finally, the judge threw out the plea and he got six years. My son’s abuser got out of jail over fifteen years ago. My son got a life sentence—somehow that doesn’t seem right.
My son receives Supplemental Security Income and has home-based services where personal support workers assist him with being part of the community. He also goes to community college to take reading classes, because he still hopes he will get his reading level high enough to get that degree. I never discourage him from dreaming and always encourage him to advocate for himself. Life was forever changed on September 9, 1991, and it affected our whole family, but most of all it changed my son’s future. This is a journey I can only wish no one else ever has to take.
—Brenda Justi
GASTROINTESTINAL PROBLEMS
Children who are shaken are frequently left with oral motor dysfunction and hence are unable to chew or swallow. Damage from shaking causes poor oral coordination and functioning as controlled by the brain. A child may aspirate (or breathe in) food or liquid instead of swallowing, or may experience gastroesophageal reflux where food is regularly brought back up the gastroesophageal tract (from the stomach into the esophagus). This can cause severe irritation in the tract from the caustic effects of stomach acid and may lead to excessive weight loss in the child.
When a child has such problems with eating and processing foods, a gastrostomy tube (G-tube) may need to be placed directly into the stomach. One type of G-tube is the percutaneous gastrostomy (or PEG) tube. A needle is inserted into the stomach and the PEG is passed over the needle, all done under anesthesia.
Finally, children who have been shaken may have problems with processing food in their intestines and bowels. They may experience constipation. Changes in their diet, medications and laxatives (prescribed under a physician’s care) may help alleviate such problems. Registered dieticians are also invaluable resources.
Betrayal by a Loved One
I was dating my daughter’s father for two years. We were high school sweethearts. I moved into his family’s house for just one month. Chris proposed to me just nine days before my worst day ever. My daughter had just turned three months old and I left her with her father for my first day in Nursing Assisting Class. He was alone with her for ten minutes, so that his mother could run to the store. By the time I got home, she was already on her way to the hospital. She was not breathing for five minutes before Chris started CPR.
Chris waited until the cops showed up in the ICU the day after her injury to confess to abusing her. Since I had a runaway record back when I was sixteen, Child Protective Services [CPS] came in and questioned my mom to find out what might have happened. Both Chris and I were nineteen at the time. Two plainclothes cops came in and questioned me for three hours and then took Chris and questioned him. When he finally confessed, I was in tears and he was escorted from the hospital. Then I was asked by CPS to obtain a non-contact order, keeping him away from me and my baby. He was formally arrested on February 24, 2000, and they released my daughter from the hospital. When it finally came time for court, he pled not guilty to first-degree assault on a child, which carried a sentence of ten plus years. He pled guilty to second-degree assault on a child and got sentenced to forty-six months. He was released after just twenty-six months for good behavior. The only thing that is required of him is to stay away from us.
As you can imagine, there was a major effect on the family. I can only work part-time, due to all the appointments that my girl has, the constant hospitalizations and her declining health.
My daughter turned fourteen this past October. She just had her twentieth surgery. She has had three brain surgeries, several G-J tubes inserted, two Baclofen pump changes, surgery on her teeth, tendon releases and many, many more. She is 100 percent total care, which means she can’t do anything for herself. She has a feeding tube and an intrathecal pump, which gives her medicine twenty-four hours a day. She wears diapers, gets nothing by mouth and has a mental age of three to six months of age. She will never walk, talk, go on a first date, get married or have children of her own.
Life today is a day-by-day struggle. Her health is slowly getting worse. We were granted a wish from the Make-A-Wish Foundation and she went to Walt Disney World this past May for her wish. We are unsure how long she will be with us, but we enjoy every minute with her. My daughter has the support of me, her younger sister, her younger brother, my boyfriend of almost five years, grandparents, aunts, uncles, several other family members and very close friends, including the local music scene in Washington State who totally fell in love with her.
—Shannon Stiles
HYDROCEPHALUS
One complication of traumatic brain injury is an excessive build-up of fluid in and around the ventricles of the cranial space. Cerebrospinal fluid (CSF) is constantly being produced and absorbed in the brain. If there is a problem with resorption, CSF backs up and causes brain, and subsequently head, enlargement.
Hydrocephalus is controlled through the use of a shunt, a small tube inserted into one of the ventricles of the brain. The opposite end of the shunt is placed in either the abdominal cavity or the jugular vein for drainage and resorption. Shunts may malfunction over time, becoming clogged, and then require replacement or repair. Shunts may also become infected. Eighty percent of infections, if they develop, will occur within six months of the shunt placement surgery. Persistent headaches, nausea and vomiting will be signs of problematic shunt functioning.
Another treatment for the build-up of CSF suggests a rerouting within the ventricular system by endoscopic third ventriculostomy. Such a procedure is much more invasive but the long-term success rate is high, especially in children over two years of age. Usually, infants will initially receive a shunt placement and then be offered endoscopic treatment later.
HYPERSENSITIVITY
Infants and children who have been shaken can be hypersensitive in various ways. Hypersensitivity to touch means that an infant cannot distinguish between types and degrees of touch and can withdraw in a self-regulatory fashion. Patient, loving hands will eventually help the infant accept a caregiver’s touch. Hypersensitivity to sound can keep an entire family tiptoeing. Infants with this condition frequently wail with discomfort when distressed by noise. Hypersensitivity to temperature relates to a dysfunction in the body’s self-regulatory and circulatory process. Frequently hands and feet will become cold or hot. Caregivers will need to be extra conscious of this when dressing a hypersensitive child.
LEARNING DISABILITY
Children in this category may appear to act and think normally until they are faced with regular mental processing challenges in the classroom. This is another subtle complication from a shaking incident that is rarely discovered. Children with learning disabilities cannot process complex information adequately or smoothly. Writing, reading, mathematical computations and other types of learning can become significant hurdles.
Great care and patience is required when working with a child with a learning disability. Such a child will probably require an individualized educational plan (IEP) whereby many disciplines will come together to develop the right tools to effectively educate the child. There are several types of learning disability: visual (problems distinguishing shapes or colors), verbal (problems with word or sentence formation), reading (misreading or problems with pronunciation), attention (poorly follows instructions) and computational (problems with math). Learning disabilities can be diagnosed by psychological testing.
MENTAL HANDICAP
After a child is shaken and if there has been significant brain trauma, he or she may not have the ability to learn like other children. Children with mental handicaps have below-average intelligence, meaning their intelligence quotient (IQ) falls below 70—the average IQ being 100. IQ may actually drop as the child becomes older.
Mentally handicapped children may later learn to care for themselves, live on their own, go shopping and hold jobs. But in a small percentage of cases, the brain damage is too severe and they never become able to care for themselves. Children can be mentally handicapped in conjunction with other SBS injuries, such as blindness, deafness or CP. Evaluation and planning by a team of professionals is vital for the successful functioning of a mentally handicapped child and other family members. Such a team should consist of a pediatrician, speech therapist, clinical psychologist, special education teacher, social worker, etc. In this situation, a properly constructed IEP will maximize intellectual and social potential. Parents and caregivers should focus on gross motor skills, such as running, swimming and playing ball, as fine motor skills have the potential to be unsuccessful and frustrating for the child.
MICROCEPHALY
This condition is defined by a head circumference that is two standard deviations below the average for gender and age. Shaking can cause an infant’s brain to slow down its rate of growth. The protective skull will slow down in tandem. Microcephaly in itself renders a poor prognosis. Most of these children will be severely disabled or have other physical complications.
PERSISTENT VEGETATIVE STATE
With the exception of death, this is by far the worst consequence of SBS. Though rare, this condition is emotionally the most difficult for an infant’s family. When an infant’s brain suffers severe damage, it may go through dynamic changes, such as excessive fluid build-up, ventricle atrophy, chronic hemorrhage, etc. In response to such trauma, the brain may shut down, leaving only the brainstem to function. Thus the child has no awareness of the outside world. Activities such as eating and drinking, moving spontaneously in bed, reacting to sights and sounds and sometimes even breathing are all very limited or impossible. The child is in a persistent vegetative state, where the body can only be kept alive artificially with breathing tubes, feeding tubes, etc. The child’s body will continue to grow, but there is little hope for rehabilitation and death can be expected within months to a few years.
RESPIRATION DIFFICULTIES
Another devastating consequence of SBS is that a child’s brain may be damaged in an area that controls the function of the throat. For example, if the gag reflex is lost, the child cannot clear his or her lungs. A child may also aspirate, or breathe in, saliva or food and could ultimately develop pneumonia. A tracheostomy is an operation done to provide an alternative route for breathing. It involves surgically cutting a hole and placing a tube in the child’s trachea. This opening bypasses the mouth and throat and allows for a separate airway. Tracheostomy tubes can be temporary or permanent. Those that are permanent are more for children who have severe problems with aspiration.
Families will need to learn the details of caring for a tracheostomy tube, which includes regular suctioning, cleaning and dressing. For chronically debilitated children, there may ultimately be a need for ventilator support. A ventilator is an apparatus that breathes for the child. This is a life-sustaining measure, yet makes the child more susceptible to lung infections.
SEIZURES
Also known as convulsions, seizures can be a feature with any brain injury diagnosis. Seizures occur from a sudden flurry of neuron activity which blocks normal brain functioning. A common entity with cerebral palsy and epilepsy, they are one of the main consequences of SBS.
Electroencephalograms (EEGs) measure brain activity during a seizure and when seizures are absent. Most children with epilepsy and CP have abnormal EEG patterns.
There are several types of seizures that a child may experience. Generalized seizures (formerly known as grand mal) are the most demonstrative of seizures and involve the entire cerebral cortex of the brain. There will be tonic-clonic seizuring. The tonic element of the generalized seizure will produce body stiffening and loss of consciousness. The clonic elements of the generalized seizure alternate between relaxation and tensing of the body’s muscles. Often, incontinence and deep sleep follow generalized seizures.
Partial or focal seizures (formerly known as petite mal) are limited to a small area of the cortex and produce involuntary, sudden movements in one area of the body. They occur in a way that is non-intrusive to the child.
There are several types of partial seizures. Simple partial seizures occur when the individual experiences an unusual sensation, including sudden, jerky movements of one body part, distortions in hearing or seeing, stomach discomfort or a sudden sense of fear. Consciousness is not impaired. Complex partial seizures are characterized by impaired consciousness. During such seizures a child will appear dazed and purposeless behaviors called “automatisms” may be observed, such as random movements, staring or lip-smacking. Generalized absence seizures are characterized by lapses in consciousness for several seconds. During this time a child will appear to be staring into space with eyes rolled upwards. They may evolve into other seizure types, such as complex partial or tonic-clonic.
Brain injury in SBS may also be followed by infantile spasms. These spasms, unlike normal startle reactions, occur when an infant’s head suddenly drops forward while its trunk and legs “jack-knife” upward. They occur frequently throughout the day and disappear around age twenty-four months. Infantile spasms can lead to a more disabling condition called Lennox-Gastaut syndrome, which is characterized by frequent seizuring. Finally, status epilepticus is characterized by a steady set of seizures where consciousness is not regained between convulsions. Any seizure that lasts more than five minutes should be viewed as a medical emergency. Shaken infants often present in hospital emergency rooms with an initial diagnosis of status epilepticus.
Seizures in infants who have been recently shaken are associated with blood in the subdural and subarachnoid spaces of the brain and intracranial pressure. As the intracranial injuries resolve, there should be a resolution of the seizures as well, though some infants may experience twitching or jerking in the face, hand or leg. Lastly, a fever in a brain-injured child can bring about a seizure (febrile seizure).
Seizures can be very troubling for parents and caregivers, but knowing what to do during a seizure can change a situation of panic into one of structured calm. Being prepared for seizures is the main thing that parents and caregivers can do for their child. The following pattern of activities is a positive system to use when seizures occur: calm, turn, allow, time, support and document.
First, the adults should remain calm in order to give maximum support to the child. Next, the adult should carefully turn the child onto his or her side in order to avoid a choking hazard. Then they must allow the child to go through their seizure without restraint. Light touches and calming words can help both the caregiver and child (if conscious) remain calm.
It is important to time seizures, both when they happen and how long they last. A child’s neurologist will need such information. When the seizure is finished, the child will need loving support. Emotional security is an important element in seizure management.
Finally, the caregiver should document the type of seizure and whether there were any complications. Caregivers who have questions about the seriousness of a seizure should contact their pediatrician immediately.
Most seizures can be controlled with anti-seizure medications. Ketogenic diets have been known to help control seizure activities. When a person fasts there is an accumulation of ketone bodies (ketosis) which in addition to increasing the body’s acidity level (acidosis) can control seizures. It is often used when antiseizure medication does not effectively control seizures or when medication is not a treatment preferred by a parent or caregiver.
