Mitigating the effects of developmental disabilities through early detection, the need of the hour | Sunday Observer
Cerebral Palsy affects posture, movement and is the commonest childhood disability

Mitigating the effects of developmental disabilities through early detection, the need of the hour

28 March, 2022

March is Developmental Disabilities Awareness and World Cerebral Palsy Awareness month. While cases of Cerebral Palsy ( CP) patients in Sri Lanka (an estimated 40,000 ) are low compared to other diseases that afflict a person in his or her life time, it is nonetheless serious enough to warrant higher priority attention as it is the most common physical disability in children leading to overall delay in development skills to reach important milestones in their lives.

The Sunday Observer discussed with CP specialist Head of Rehabilitation Services MJF Charitable Foundation Dr. Gopi Kitnasamy the causes of CP , how it is identified, its impacts on a child’’s development, and most importantly why early detection is vital towards helping such children achieve the goals needed to overcome their disabilities.


Q: To begin with, what exactly are Developmental Disabilities ?

A. They are a group of conditions arising from an impairment in physical, learning, language, or behavior areas. They include disabilities such as Cerebral Palsy, Autism, Muscular Dystrophy, Down syndrome, or fetal alcohol spectrum disorder and affect a person’s growth and/or cognition.

Q: When do they start to develop?

A. Usually during the first years of life affecting the developing brain. Most developmental disabilities begin before a baby is born, but some can happen after birth because of injury, infection, or other factors that can impact on day-to-day functioning, and usually last throughout a person’s lifetime.

Q: Which of them is the most common physical disability in young children?

A. Cerebral Palsy (CP). It affects their movement and posture for life. Hence It is important to diagnose cerebral palsy as soon as possible to maximise a child’s mobility and potential. Unfortunately, diagnosis is often delayed for a number of reasons and lack of awareness is an important reason.

Q: Any recent data on CP patients in Sri Lanka?

A. We are currently working on the statistics and we estimate that there are more than 40,000 children and adults with CP in Sri Lanka. According to the distribution and participation data from our wheelchair and awareness camps, the Northern province, particularly Jaffna district has the highest number, but we need to do further study to get the exact statistics.

Q: How is it caused? What are the risk factors?

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. But for most of these conditions, we don’t know the exact cause. Low birthweight, premature birth, multiple birth, infections during pregnancy, mothers with medical conditions, complicated deliveries, severe jaundice and seizures in infants are associated with an increased risk for many developmental disabilities.

Q: Are there different types of Cerebral Palsy? How is it diagnosed?

A. Timing, when the brain damage occurs to the developing brain , is an important component of a Cerebral Palsy diagnosis. It can also impact the severity and type of Cerebral Palsy a child develops. When a child has congenital Cerebral Palsy, it means events that occurred during pregnancy or at birth. Although congenital Cerebral Palsy 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. As we all know, the brain continues to develop after birth. In cases of acquired Cerebral Palsy, it is believed the child was born without the condition, but acquired the 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: Are there early clues or signs for parents to look out for?

A. They must watch out for and closely monitor what we call Milestones in the child’s development as he/she grows.

Q: What are these milestones?

A. Milestones are behavioural or physical checkpoints in children’s development as they grow and are the core skills infants and toddlers should be reaching. Milestones mark the month most babies start a certain behavior, skill or ability based on baby’s age, but exact timing will vary. All children are different, and they develop at their own pace, but most children reach developmental milestones at or about the same age. It’s difficult to tell exactly when a child will learn a given skill. However, the developmental milestones give 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. 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 as they are offer very important clues about the child’s developmental health.

Q: Give us some examples of the important ones

A. 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. 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.

Q: Any other early signs for CP?

A. 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. 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.

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. Overall, Cerebral palsy can affect a person’s posture, balance and ability to move, communicate, eat, sleep and learn.

Q: Why is it very important to be aware of these early clues or signs?

The most important reason for monitoring each child’s development is to determine whether a child’s development is on track. 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.

If a child has a developmental delay, it is important to get help as soon as possible. Early identification and intervention can have a significant impact on a child’s ability to learn new skills, as well as reduce the need for costly interventions over time. 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.

Q: So how can parents help them overcome or mitigate these disabilities?

A. Early Identification is the key to success in childhood disabilities. 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. 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: As Head of Rehabilitation Services at MJF Charitable Foundation, what part do parents play in the rehabilitation process?

A. A family-centered or focused approach is considered the best practice in Paediatric rehabilitation. This approach recognises 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 emphasised the importance of this approach and have seen better progress with these children when the parents are part of the rehabilitation process.

Q: What inputs has the MJF Charitable Foundation made towards achieving that goal?

A. We introduced a disABILITY Screening App that 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 or contact our hotline 0777 116 116 to receive these services.

Q: Your message to parents of children with Cerebral Palsy?

A. As a parent, you know your child best. If your child is not meeting the milestones for his or her age, or if 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. Don’t wait or delay seeing your child’s doctor. Acting early can make a real difference.