World Cerebral Palsy Day was recently observed bringing together specialists in the field and as well as the larger community of nurses, physiotherapists, and care workers involved in developing the maximum potential of thousands of children across the world suffering from this debilitating condition for which there is no cure.
The Sunday Observer spoke to the Founder of Cerebral Palsy Lanka Foundation and Head of Rehabilitation Services, MJF Charitable Foundation, Dr. Gopi Kitnasamy to get more insights into how it is caused and how parents can help maximise their child’s potential for development.
Q: World Cerebral Palsy Day(CP) was observed recently (October 6). As many readers are ignorant about this condition could you tell us more about it and who are most vulnerable to developing it?
A. Cerebral Palsy (CP) is the most common physical disability in children as it affects their movement and posture.
Q: Are there different types of CP?
A. There is Congenital C.P and Acquired CP. When a child has congenital Cerebral Palsy, it means events that occurred during pregnancy or at birth. Although it may not be diagnosed immediately, the condition exists at birth and can be detected months or years later. Seventy percent of all Cerebral Palsy diagnoses are diagnosed as congenital. In cases of acquired Cerebral Palsy, the child may be born without the condition, but acquired brain damage before the brain fully developed. Acquired Cerebral Palsy is not inherited. Up to 10% of all cases of diagnosed Cerebral Palsy are Acquired.
Q: Since each World Cerebral Palsy Day focuses on different issues relevant to the time, what will this year’s focus be?
A. This year our focus will be on creating awareness about the importance of Early identification of Cerebral Palsy and the benefits of starting the Early Interventions to get the best outcomes for the child.
Q: Do you know how many Sri Lankans have this condition?
A. We estimate there are more than 40,000 children and adults with CP in Sri Lanka.
Q: What are the factors that drive this condition? Are they similar to other developmental disabilities?
A. Most developmental disabilities are thought to be caused by a complex mix of factors. These factors include genetics, parental health and behaviors (such as smoking and drinking) during pregnancy, complications during birth, infections the mother might have during pregnancy or the baby might have very early in life and exposure of the mother or child to high levels of environmental toxins, such as lead.
Low birthweight, premature birth, multiple birth, infections during pregnancy, mothers with medical conditions, complicated deliveries, severe jaundice and seizures in infants are also associated with an increased risk for many developmental disabilities.
Q: What are the earliest indications of CP that a parent should look out for?
A. Milestones are behavioral or physical checkpoints in children’s development as they grow. Milestones mark the month most babies start a certain behaviour, skill or ability based on the baby’s age and though exact timing will vary most children reach developmental milestones at or about the same age giving a general idea of the changes to expect as a child gets older. Skills such as sitting on their own, crawling, taking a first step, smiling and playing with other children are called developmental milestones.
Children reach milestones in how they play, learn, speak, behave, and move (rolling, sitting, standing, crawling and walking). They can be divided into motor, sensory, communication, feeding, cognitive, social and emotional milestones.
Q: If a child does not reach these milestones?
A. Not reaching milestones or reaching them much later than children the same age can be the earliest indication that a child may have a developmental delay. The most important ones to be monitored are ability to hold the head up by 3-5 months, smiling at you, sucking/drinking and swallowing well, sitting independently by 6-9 months, standing by 10-12 months, walking by 12-15 months, making eye contact, playing/using both hands, reaching out for toys, responding to sound/voice, making sounds.
Q: Warning signs?
A. Some warning signs of possible developmental delays are not able to hold head up by 6 months, sitting independently by 9 months, not standing or walking by 18 months, not making eye contact, not smiling at you or recognising familiar faces, not making babble sounds, not using both hands, not rolling over on both sides, not sucking or drinking well and not responding to sounds/voices.
Some specific early warning signs of CP are while lifting or carrying, there can be variations in muscle tone, such as being either too stiff (spasticity or spastic) or too floppy. Sucking and feeding difficulties, difficulty in holding the head upright, excessive crying, lack of attention, favoring one hand over the other (stiffness on the other side) are the other common signs.
Q: Health impacts if parents delay in taking the proper interventional treatment for some reason?
A. Yes. Getting help early is key to a child’s future. Some warning signs in primary school children are late talking, frequent falling, lack of planning, clumsiness, unstable pencil grip, trouble interacting with peers, difficulty in following directions, poor coordination, single hand preference, easily distracted, problems with math. Cerebral palsy can affect a person’s posture, balance and ability to move, communicate, eat, sleep and learn. The parts of the body affected by cerebral palsy, the level of severity and combination of symptoms can differ for each person. Contractures of the muscle tissue due to severe tightening of the muscle (spasticity), which can inhibit bone growth, cause bending of bones, and result in joint deformities, dislocations, and partial dislocations.
Q: What happens as the condition progresses?
A. People with cerebral palsy may experience uncontrolled or unpredictable movements, muscles can be stiff, weak or tight and in some cases people have shaky movements or tremors. People with severe cerebral palsy may also have difficulties with swallowing which can cause aspiration and lead to pneumonia, breathing problems, head and neck control, bladder and bowel control, poor eating which can lead to malnutrition and dental and digestive problems. That’s why monitoring the child’s development to determine if he/she is on track is so important.
Q: How is this done?
A. Any problems noticed during developmental monitoring should be followed up with developmental screening. Developmental screening is a short test to tell if a child is learning basic skills when he or she should, or if there are delays. Early identification enables timely early intervention when the greatest gains are possible from neuroplasticity. It hastens the onset of therapy and treatment, ultimately minimising resultant impairments, preserving cognitive function, and allowing time for the child and parents to adjust. It’s about recognising difficulties quickly, identifying and making a prompt intervention to support children and their families so that issues are tackled before they become more ingrained problems. The first two years of our lives are when the brain is at its most plastic (neuroplasticity).
Q: You mentioned Neuroplasticity. What is Neuroplasticity?
A. Neuroplasticity is the brain’s ability to change – to rewire, relearn and strengthen important connections. The good news is that the brain will attempt to create new pathways around an injury, by allowing a healthy area of the brain to take over or relearning how to do things by strengthening an existing healthy connection. The brain’s neuroplasticity is most potent in children aged 0-6 years, which is why getting access to early intervention as soon as possible is vital. There is strong evidence that early intervention when an infant’s brain is at its most plastic can improve motor skills later in life, but the average age at which an infant is diagnosed as a result of observation is 14-16 months. It leaves only a narrow window for therapeutic interventions to have its biggest impact. Evidence is also emerging that commencement of early intervention before 6 months improves children’s motor and cognitive outcomes.
Q: Do you have different tests for children with this condition depending on their level of risks to this condition?
A. For high risk infants, we use assessment tools like General Movement Assessment (GMA) which has high predictive validity to identify neurological issues which may lead to cerebral palsy and other developmental disabilities. Infants have typical and distinct spontaneous “general movements” from before birth right through to 20 weeks post term. Infants whose general movements are absent or abnormal are at higher risk of neurological conditions, in particular cerebral palsy.
Q: Rehabilitation- what is the best approach to rehabilitating disabled children? And how have you put it into practice?
A. A family-centered or focused approach is considered the best practice in Paediatric rehabilitation. This approach recognizes that each family is unique, is the constant in a child’s life, and that parents are the experts on a child’s abilities and needs. As a parent of a child with CP, I have always emphasized the importance of this approach and have seen better progress with these children when the parents are part of the rehabilitation process.
During the Covid-19 lockdown, we introduced disABILITY Screening App which is a tele-screening and tele-therapy platform. The App aims to share knowledge, therapies and services for people with disability especially children in regions of Sri Lanka where access to transport, regular therapy and other services are limited. The app includes guided developmental screening for early identification and intervention, allowing caregivers to monitor progress with the guidance from MJF Charitable Foundation’s multidisciplinary rehabilitation team. The screening questions are designed from 0-3 months to the age of 5 years and it’s guided with pictures, videos & sounds for making it easy for families to understand and give their responses. Once the screening questions are answered and completed, the MJFCF’s team will be in touch with the families for further assessments and necessary interventions. The app is available for both android and I-phones and is available free to download on the Google Play and App Stores. The families can also use our online platform www.disability.lk to receive these services.
Q: Did your team have any special reasons for developing this App?
A. Among people with disabilities, children are especially vulnerable as undetected disabilities in their early years and delays in rehabilitative initiatives can lead to delays in development. Early identification can help foster stimulating environments where families, healthcare, and education professionals are better prepared to support the development, inclusion, and active participation of children with disabilities. The disABILITY App will bridge the gap between the families with persons with disabilities and will help provide the necessary services remotely.
Q: Do you have a message for parents of children with CP or any other developmental problems?
A. Parents play a vital role in helping their children develop and achieve their milestones as they know their child best. If your child is not meeting the milestones for his or her age, or you think there could be a problem with the way your child plays, learns, speaks, acts, or moves, talk to your child’s doctor and share your concerns. Acting early can help your child who doesn’t reach milestones to get that extra support and services to reach his full potential.