Doctors share perspectives on cerebral palsy

WESTERN BUREAU:

As World Cerebral Palsy Day was observed on October 6, many people around the world, including Jamaica, used the opportunity to turn the spotlight on this medical condition that affects between two or three babies out of every 1,000 births globally, according to the World Health Organization.

Cerebral palsy is a term used for a group of disorders related to damage suffered by the developing human brain during pregnancy, birth, or shortly after birth.

Dr Roxanne Melbourne-Chambers, senior lecturer and consultant paediatric neurologist at the University Hospital of the West Indies, told The Gleaner that a variety of physical problems can result from the condition as the affected child grows older.

“From the baby is being formed in the womb, and even as early as the first three months of pregnancy, there are problems that can arise with brain formation. There is a problem with tone and posture, and many times the children start out quite sloppy, and then they develop sickness in their limbs,” said Melbourne-Chambers.

While there is no local data available for the effects of cerebral palsy in Jamaica, Melbourne-Chambers noted that persons with the condition can live up to 70 years, although the life expectancy depends heavily on the types of therapy given to the patient.

“As far as the life expectancy goes, it is a range of years for patients to live. I do not think we have data available for Jamaica, but based on data from the United States, depending on treatment, persons can live between 20 and 70 years, although it depends on how severe the condition is,” said Melbourne-Chambers.

“Persons may have a milder form of cerebral palsy, and it may be milder in terms of the degree of motor impairment. Cerebral palsy does not mean that there is mental retardation or intellectual disability, so there are adults with cerebral palsy who are able to hold very good jobs,” she added.

There have been past reports of cerebral palsy patients in Jamaica who have achieved successes that most people take for granted. These include the stories of Leana Pelicie, a Kingston-based Vaz Preparatory School past student who attained the United States President’s Gold Award for academic excellence in 2016; and Rajeeb Page, a resident of Cromwelland, St Mary, who passed four out of five subjects in the Caribbean Secondary Education Certificate examinations in 2020.

But in order to have a chance for an improved quality of life, cerebral palsy patients must undergo different forms of therapy to address the body’s impaired motor functions, including walking and limb movement, and to aid in developing speech.

That is a challenge that frequently faces Dr Paula Dawson, a consultant physiatrist, medical rehabilitation specialist and founder of the Kingston-based Rehabilitation Institute of the Caribbean, as parents of children with cerebral palsy repeatedly question whether their children will be able to function normally.

“A lot of guardians or parents of these children will always want to know, ‘Will my child walk? Will my child creep? Will my child be ever able to feed themselves?’ We probably have about close to 500 or 600 patients in our clinic, and we are pioneering some treatments for kids with cerebral palsy in terms of the management of their spasticity,” said Dawson, referencing the medical term for increased muscle stiffness which may interfere with speech and movement.

Dawson explained that a variety of traumas may result in cerebral palsy, and not all of them have to be directly related to physical head trauma.

“Near-drowning can cause it, or head trauma from falling off the bed, or meningitis or a stroke. Before the brain fully matures, you can have an injury to the brain that decreases oxygen to the brain,” said Dawson. “The brain injury itself does not get worse, but sometimes it appears that the function gets worse. As the child grows, they may get weaker and tighter in their muscles.”

Melbourne-Chambers noted that physical therapy is particularly crucial, as it helps cerebral palsy sufferers to develop a greater range of body motion and keeps their joints from becoming locked in one place, which can cause potential long-term damage.

“Some patients will have problems with swallowing, and some will have significant impairment of the use of their hands. Depending on how they are affected, some children with cerebral palsy will need speech therapy, and some will need what is called ‘occupational therapy’ to help them with how they use their hands; and of course, most of them will need physiotherapy,” Melbourne-Chambers explained.

“Physiotherapy is really to help them attain proper posture and positioning, and also to maintain the range of motions at the various joints. If you have somebody who is stiff, and it is hard moving them so their legs are always pointing their toes down, then they can end up with what we call contractures, where their joints are held in and there is no full range of movement of the joints. When they end up with restriction of movement across these joints, there is a potential for joint injury and arthritis down the road.”

Without the proper physiotherapy treatment, cerebral palsy patients are in danger of developing scoliosis, or curving of the spine, which in turn can affect the positioning of the lungs and hinder the patient’s breathing.

Some cerebral palsy patients may also have difficulty swallowing, which puts them at risk of choking while eating, because food particles can enter the passageway to the lungs. That problem with swallowing can also result in young children with cerebral palsy becoming malnourished.

“In my experience, the main risk to those children is aspiration pneumonia, where stomach contents can come up and then escape into the lungs and cause them to have pneumonia, and that can cause death. Also, many times children with cerebral palsy do not grow like other children, so they are naturally smaller, but some of them will have malnutrition on top of that just because of the feeding difficulty, and that reduces their immune response,” said Melbourne-Chambers.

For Dawson, educating family members on how they can help in their children’s treatment of cerebral palsy is crucial, along with the specific treatments, such as what her clinic offers.

“Rehabilitation is about first educating the parents on what to do in terms of caring for the child, so you want to make sure to minimise the complications. For example, if you are stiff, you can get tightness around the joints to the point where the joints cannot move at all, and a rehab specialist will work together with the physical therapist, the occupational therapist. And overseas, there is the orthotist, who helps with the bracing of limbs, although in Jamaica we do not have that kind of specialist,” said Dawson.

Dawson said she is pioneering phenol injection in Jamaica, which involves injecting in the muscles to relax the muscles, but it has to be done repeatedly. “Then after that, you can do surgery in which we work with the orthopaedic surgeon, and they will lengthen a tendon or fix the joint,” Dawson added. “Then we work with a neurosurgeon, who will go into the spine and do a type of surgical rhizotomy, which will relax or cut the nerves to prevent that tightness in the muscle.”

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