A CASE FOR CEREBRAL PALSY

A CASE FOR CEREBRAL PALSY

Cerebral Palsy is not a condition much heard of – or spoken about, yet it is a medical condition that is increasing at an alarming rate all over the country [i.e. Nigeria]

It is easier to hear about Autism than it is Cerebral Palsy probably because of the degree of awareness already created for autism all over the country. The chronic silence about the reality of this ailment is indeed a perplexing paradox considering its increased proliferation in the Nigerian society.

WHAT IS CEREBRAL PALSY?

Cerebral palsy (CP) is a general term for a group of permanent, non-progressive movement disorders that cause physical disability in development mainly in the areas of body movement. It is a central motor dysfunction affecting muscle tone, posture and movement resulting from a permanent, non-progressive defect or lesion of the immature brain. Most cases are congenital, arising at or about the time of birth, and are diagnosed at a young age rather than during adolescence or adulthood. CP is neither genetic nor an infectious disease, and thus it is not contagious. [a]

THE PREVALENCE OF CEREBRAL PALSY

In a three-year study of cerebral palsy (CP), CP accounted for 16.2 per cent of new referrals to a child neurology clinic. 63 per cent of these had potentially preventable causes.  [b]

According to a figure provided by the BENOLA FOUNDATION [benola.org], 1 in 90 births is affected by CP that is in contrast to the 1 in 297 births recorded in more developed world.

The prevalence of cerebral palsy among pediatric neurology clinic of the Olabisi Onabanjo University Teaching Hospital from 2000 to 2006 was a dashed 50.3 percent. [c]

Most people living with or managing CP conditions believe they are alone in this until they find or stumble upon some other family undergoing the same situation – same challenges.

IMPLICATION OF THIS PROLIFERATION

This neurological disorder of childhood comes with significant medico-social implications. It will be correct to say that if nothing is done to check and reverse this trend then ten or twenty years from now, the country would have a significant percentage of her population being physically challenged, fully dependent, unproductive and unable to live purposeful lives.

Whilst the country’s population continues to sky rocket, there are grave concerns that there is an acute shortage of care personnel and inadequate finances for effective rehabilitation services required to correct and check this disorder.

THE CEREBRAL PALSY SILENCE

THE CEREBRAL PALSY SILENCE

The biggest culprit for the occurrence of CP is birth asphyxia, a situation where the brain of the new born [or unborn] child is starved of oxygen. This can lead to a permanent impairment to normal health with the child having difficulty reaching developmental miles stone like a normal child would.

The permanent brain lesion that results in cerebral palsy affects other brain functions apart from the motor area, often resulting in speech, auditory, visual and mental deficits.

Most affected families react to such prognosis with fear and indeed immense trepidation. And questions easily bombard their minds; how does this child go through life? How will the society relate to [or react to] him? Is there any purposeful future in view for the child…..?

Our society for the most part is bereft of compassion for the physically challenged. It is the reason why it has taken years to put legislation in place to cater for this group of persons.

There are so many stigmas for this kind of neurological disorder that it is nearly impossible to have them integrated into society. This is most unfortunate.

According to AVM Felix Olufemi Gbadebo – OFR and founder of BENOLA CEREBRAL PALSY INITIATIVE, “in Nigeria as in most parts of Africa, stigma, social and cultural pressures as well as religious beliefs force parents who can afford proper care and management to hide such children from public view, while those who cannot afford it, abandon such children, use them as tools to beg for alms or even annihilate them! To a large extent, this unfortunate trend contributes significantly to increase the infant mortality rate in these parts.”

WHERE WE ARE

There is no nationally known platform or special institution dedicated to special needs in Nigeria[?].

Aside from the efforts of Non-governmental organizations to intervene and proffer support for this category of people, there is no national organization that addresses these needs.

If you had searched the internet before March 2013 its very unlikely that you would’ve found any referral to any CP intervention, treatments or advocacy efforts in Nigeria yet our public hospitals are filled with parents desperately seeking answers to this disorder which is affecting their young ones. [If you ever find a mother with a 7 year old child strapped to her back, it’s not always because the child has a foot ache or a club foot – you’re most likely observing a CP situation].

Again, if you find about 200 mothers and/or care givers all cramped up in a physiotherapy ward of a public hospital without as much space as to even sit – or stretch their legs [as might be required in a typical physiotherapy session for CP], then you’re most likely observing children affected with the CP disorder.

Also, when you find that a parent in your neighborhood once had a child who was physically challenged, and you suddenly realize you haven’t seen that child in about a year or more, you can be most certain that something sinister has happened to that child – something other than a ‘natural cause’….

There is a complexity about the nature of the condition which might result in wrong or late diagnosis.

If people are knowledgeable and aware about what signs to look out for then early intervention will be possible and most beneficial. But as it is there is a huge ignorance about the condition and many more continue to suffer and are prone to be victims.

This is where we are right now in this part of the world.

TURNING THE TIDES

TURNING THE TIDES

To my mind, there is a short term as well as a long term approach to curbing the tides of this ugly condition in our environment. We can save ourselves the agony and the pain associated with being confined to a lifelong task of managing CP disorder.

We must admit that this condition is here with us. We must be alive to the dangers it portends to our society. We must be sympathetic to the many innocent lives that are daily being affected by this condition. We must be compassionately driven enough to reach out to the many families dealing with the daily challenge of managing CP of a child/children!

Breaking the Silence

The founders of the BENOLA CEREBRAL PALSY INITIATIVE [benola.org] are the first in this country [in my own understanding] to share with the world their journey with a CP child. A trip on their story as well as their advocacy intent [d] will give you an insight into the difficulties involved in managing and gaining treatment for this disorder.

This bold step by this family – I believe will be that crucial trigger required to begin the much needed [albeit overdue] campaign and/or advocacy efforts [at a national level] for this incredibly prevalent yet overlooked condition.

Governmental Intervention

A condition that is this prevalent and which has grave consequences for the nation must certainly get the attention of the policy makers in this country.

In Nigeria, health care at the primary level is virtually nonexistent. This cannot continue to be so. The government of the time must have the political will to turn around the state of things with respect to the provision of affordable and obtainable healthcare all over the country [the present situation in which there is a Doctor to patient ratio of 1:6400 must be a source of concern to any decision or policy maker]. [e]

The complexity of a CP disorder requires the intervention of no less than 5 specialists which may include [but not limited to]:

Early Intervention Specialist, Speech and Language Therapist, Physical Therapist, Occupational Therapists, Neuro Surgeon e.t.c.

With this kind of attention, care, and financial implications it is not certain if there is any hope whatsoever for the poor who might come to face a CP disorder situation.

A Critical look at Medical Education and Training

A huge number of incidences which has resulted in CP disorders in children is traceable to an ill equipped, untrained medical personnel. Without basic equipment our hospitals are nothing short of dispensaries; bare and sparse without basic tools to administer well being to her many patronizers.

Even the private hospitals who charge N10,000 as registration fees have nothing to show for this arrant pilfering of the unhealthy lot who patronize them.

Government is making effort to arrest the growing trend of unqualified persons who feign knowledge of the medical field but there’s more to be done with respect to taking a critical look at the quality of education given in our medical institutions of learning. Evidently, the downside of having a barrage of unskilled health care givers and medical personnel is telling on the quality of life of the populace as evidenced in the upsurge of CP incidences. We must not continue like this.

Mismanaged child birth is arguably the number one cause of infant mortality in Nigeria. According to, Ms. Jean Gough, the UNICEF Country Representative, 20 per cent of child deaths in sub-Saharan Africa occur in Nigeria. She went on to say that Nigeria had yet to improve on the prevalent rate of mortality of children under five years old [f].  We’re unsure what the practical steps are being taking to stem this tide.

Again, because of the dearth of statistics and the secrecy surrounding CP, it is unclear what the toddler, pre-teen, teen, adult mortality rate is on account of parental action to CP by reason of poverty and an acute dearth of medical care in any form whatsoever.

The Private Sector

The state of the country’s health sector is a great source of concern for every Nigerian, and I’m certain for the private sector too. To say that there is a lot to be done in this regard will be understating the evidently obvious.

If there’s any clarion call to the private sector, it would be for her social responsibility endeavors to direct an in-depth look into the disorder called CP with a view to observing critical short and long term means of impacting and alleviating the sufferings of many affected families who grapple with this preventable condition largely due to no fault of theirs but to the dysfunction which has so pervaded our lives on account of a system which is yet to place any premium on human life [by avoiding and shirking her responsibility to train, educate and enlighten her populace on life threatening disorder as Cebral Palsy].