Dr. RASHID SAIFI
Living with cerebral palsy
Cerebral Palsy (CP) a neurological condition is a most common motor (muscle) disability in childhood. Cerebral means brain and palsy means weakness or problem with using the muscle caused by the abnormality of brain. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. It is group of permanent disorder of primarily movement, muscle tone and posture. It also affects sensation, balance, vision, hearing, speech, intellect, coordination etc.Cerebral palsy is typically diagnosed during the first or second year after birth that appears in infancy or early childhood. As per the details it is found in 2.5-3 % per 1000 live births and the males are more commonly affected than females (1.5:1).
The child may have CP if he or she might had an insult or injury to the baby’s developing brain before, during birthor in some cases in the first year of life. Reason of the brain injury are multifactorial it could be an infection to the pregnant mother such as germen measles and herpes simplex, brain infections like encephalitis and meningitis, bleeding into the brain, lack of oxygen to the brain during delivery, severe jaundice to the baby, gene abnormality leading to an abnormal brain development, any head injury due to fall, accident, or child abuse.
Apart from these reasons a child may have cerebral palsy if he or she is prone to various risk factors like low birth weight (<2.5kg), premature birth i.e. before 37th week of pregnancy especially if the child is born before 32nd week of pregnancy, jaundice right after the birth, birth complications such as detachment of the placenta, uterine rupture, or problems with the umbilical cord during birth can disrupt oxygen supply to the baby and result in CP, multiple pregnancies as in having twins, triplets etc. and in some cases the females who have undergone infertility treatment are also susceptible to deliver child with cerebral palsy.
How CP affects your child
Cerebral palsy can affect the whole body, or it might be limited primarily to one limb or one side of the body.A child may represent features such as variation in the muscle tone either too tight and stiff (spastic/ rigid) or too lax, delays in reaching motor skills milestones, such as pushing up on arms, sitting up or crawling, difficulty with sucking and eating, excessive drooling and swallowing issues, delays and difficulty in speech and language, learning disability, difficulty in doing fine task such as buttoning and unbuttoning, slow and poor movements, hyperactive or jerky movements, tremors or involuntary movement depending upon the type of CP the child is suffering from, difficulty in walking such as walking on toes, a crouched gait, a scissors-like gait with knees crossing, a wide gait with feet apart, favouring one side of the body, such as reaching with one hand or dragging a leg while crawling, poor balance and coordination.
Variants of CP: Types
Classification of the CP is done according to the main type of movement disorder involved. The most common type of CP is the Spastic CP found in about 80 % of CP population characterized by excessive tightness (increased tone) in the muscles and hence causes difficulty in moving the body part. Depending upon the body area affected it’s been classified as spastic diplegic when lower body is affected more than the upper body, spastic hemiplegic is when only one side of the body is affected, and Spastic quadriplegic (most severe variant) in which both the arms and legs are affected along with the trunk and the face.
In dyskinetic CP child have problems controlling the movement of their hands, arms, feet, and legs, making it difficult to sit and walk. The movements are uncontrollable and can be slow and writhing or rapid and jerky because the tone of the muscle varies between too low to too lax.
People with ataxic CP face poor balance and coordination. They might be unsteady when they walk and stand. Another variant is Mixed CP in which there are symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic CP.
How to seek medical advice
Tracking a child’s growth and development over time is the first thing which brings the parentsto the doctor. Doctor screens further by using various screening tools and scales to diagnose it better.
It’s better late than never: Management
Unfortunately, it can’t be cured but the good news is we can manage the symptoms and stop the worsening of the sufferings. It is very important to begin the intervention as early as possible. It’s a team approach in which a team of health professionals works with the child and family to develop a plan to help the child reach his or her full potential. Approaches as medicines, surgery, physical therapy, occupational therapy, speech therapy, braces etc are used.
Occupational therapy plays a large role in the development of a child with cerebral palsy. The job of an occupational therapist is to teach the ability of the fine motor skills and small muscles which include: Hands, feet, mouth, finger, toe.
Occupational therapists also teach daily living skills such as: Dressing, grooming, feeding, toileting, and everyday mobility include use of mobility aids and transportation.
A burden on family & caregiver
Family and caregiver burden is so unique and stressful for the mother especially because she feels pain and aches due to extra physical efforts of caregiving. She also suffers from a feeling of guilt about the child’s condition leads to the difficulty in balancing family and work; also it’s an immense financial burden. In most of the cases mother also lacks support from the husband and family in the process of caregiving, thus care of the other family members also compromised. At the community level, the mothers had no support from the community members and felt isolated from others consequently lack of participation in social events.
(The Author is Neuro occupational therapist, Consultant Vimhans Hospital, New Delhi)