The discovery

It was gradual. As The origin indicates, the damage was done in a week or two after Shantanu’s birth. Though the parents were initially mindful for a trouble of some or the other kind, but its severity was to be discovered in the years to come.

When he was 6 months old, Shantanu was not able to perform physical activities similar to normal children his age, such as crawling, or using hands and fingers, or speaking, but could hear and see (which was evident by his pointing at objects like fan, tubelight, etc with his eyes, whenever asked). He was then taken to Choithram hospital for treatment, and thus began his physiotherapy under the able guidance of Dr Sudhir Kothari. Dr Kothari not only counseled for physical treatment, but also educated in other CP related aspects, like Speech therapy, education at home and effective parenting for such children. Gradually it became clear that physiotherapy could not cure Shantanu’s disability but was still vital for his proper metabolism. Many other treatments - Allopathy, Acupressure, Pyramid Therapy, Reiki, Magnet Therapy, Homeopathy, Naturopathy, Sleep Therapy, MRI scan to detect scope for neurosurgery - followed over the years, to no avail.

It was Dr Kothari who first identified that Shantanu was not mentally retarded and insisted on testing his IQ. The diagnosis was correct and Shantanu’s IQ was estimated at 92+ (‘+’ implies actual IQ is greater than the estimated figure due to restriction in physical ability like drawing shapes and all) at the age of 6 years. This was Shantanu's first step towards normality.

The origin

Jaundice. It is estimated that approximately 50% of newborn babies develop this odd looking discoloration. (Where Rh incompatibility occurs, the mother’s immune system attacks the child’s blood cells, destroying their ability to process bilirubin, a by-product of the breakdown of red blood cells. The problem causes liver overload and jaundice).

Severe jaundice is treated with phototherapy - the use of strong light to treat hyperbilirubinemia of the newborn. The blue light breaks down the bilirubin so that the baby’s liver can pass it. Jaundice, if left untreated, can cause brain damage. And in turn, brain damage can cause cerebral palsy.

newborn infant undergoing (white-light) phototherapy to treat neonatal jaundice

It so happened that Shantanu was among those 50% babies who are born with jaundice - which was left undetected for about a week. When it was finally detected by his mother (lord knows what the doctors were doing till then), the disease had become pretty severe and phototherapy had to be applied. The doctors forecasted that it could already be too late for phototherapy to completely cure Shantanu's jaundice, and the damage may have been done, which could be any kind of disablity including - cerebral palsy\trouble in reading, writing, and basic math\motor function\mental retardation\ hearing impairment\ speech impairments\ and eye muscle disorders. In this case it later turned out to be about 80% physical disablity - or quadriplegic cp. But, incredibly, his IQ remained normal. Miracles, happen.

Who is Shantanu?

Shantanu is a 20 year old boy from MP, India who suffers from quadriplegic CP. As the earlier post explains, he is not able to walk even with a walker or other form of assistance, cannot move independently into a wheelchair, has difficulty sitting, is not capable of feeding himself and speaks with some difficulty (you need to be a keen listener to be able to understand him).

He is completely dependent on his mother for carrying out his normal day to day activity. He has normal intelligence and is currently pursuing his graduation in the field of commerce. His interests include listening to music, watching television (specially discovery channel - people often get surprised by his factual knowledge), reading newspapers, and above all, pestering his elder sister (who happens to be me).

He always has a question for every answer and sometimes its really annoying when his why's make you really think why. Convincing him about a thing so that you get no further queries in that direction is like winning a marathon...but the charming smile manages to disarm you every single time.

What is Cerebral Palsy?

Cerebral palsy is a collection of motor disorders or dysfunctions that occur as a result of damage to the brain before, during or after birth. It is not a progressive disorder. It is static, meaning that the condition will not get worse over time. A child with cerebral palsy may have poor coordination, irregular or abnormal movement patterns, difficulty with balance, very tense muscles, or muscles that have very little tone and make the child floppy, or a combination of these motor disorders. Different parts of the body can be affected in different ways, and each individual with cerebral palsy will have a unique combination in type of dysfunction and level of severity.

The forms of cerebral palsy are generally classified as spastic, athetoid, ataxic, or a mixture of these. While it is a condition that affects movement, posture, and coordination, there can be associated conditions that are more likely to occur in children who have cerebral palsy.

Most of the complications of cerebral palsy are neurological. The part of the brain affected controls muscles that in turn move bones. Children with cerebral palsy often have orthopedic problems as well.

Quadriplegia is a type of cerebral palsy in which all four limbs are affected. It is usually accompanied by more severe symptoms of nerve damage interfering with normal muscle movement than the other types. Patients with severe spastic quadriplegia will not be able to walk even with a walker or other form of assistance, cannot move independently into a wheelchair, will have difficulty sitting, and usually are not capable of feeding themselves.