This is quite a topic, very emotional and heart wrenching. It is tough on the child, parents, carers and health providers.  As distressing as the condition is, children with Cerebral Palsy (CP) can be very lovely, cheerful and exude so much joy.

 The technical definition of cerebral palsy is an irreversible, non progressive disorder of posture or movement usually caused by an insult to the developing brain sustained in the uterus or around the time of birth. What this basically means is that muscle function is disrupted. The insult could be bad jaundice, infection (anything…bacteria, viral,) or it could be caused by a bleed in the head of a baby (especially low birth weight or premature ones). Either of the limbs could be affected resulting in hemiplegia (one sided, up and down) diplegia (two upper or two lower limbs) or quadriplegia (all four limbs). Another less common type is athethoid CP which results from damage to a part of the lower brain and manifests as wriggly movements of muscle groups. 

Along with the basic problem comes complications such as stiff contractions of various muscles, speech defect, intellectual deficits, constant drooling of saliva which leads to dental carries, respiratory and urinary infections, seizures; an endless list. A lot of current research in finding solutions is focusing on using embryonic stem cells to regenerate nerve cells. Another area where a lot of work has been done is geared to resolving the accompanying muscle spasms. The use of botox injections directly into the muscle is one of such innovations.

Ideally, caring for children with CP and controlling complications involves a multi disciplinary team consisting of a doctor, orthopaedic surgeon, speech therapist, ophthalmologist, physiotherapist, occupational therapist, dentist, nurse, special needs teacher etc. In addition, structural adjustments might be necessary in the home to facilitate moving around. In the richer countries, some homes are piped to provide a central supply of oxygen for children with accompanying chronic lung disease. It can all be quite expensive. Conversely, in most developing countries there is no efficient system in place for offering financial support or any form of disability living allowance. Affected families have to contend alone with the emotional stress as well as the added financial burden with minimal state support. This remains so despite the fact that respite in the form of breaks for the primary carers has long been recognised to improve the overall quality of life of the child being looked after.

Although formal government financial back up does not often exist or is not able to service the need in most developing countries, luckily we can boast of an excellent ‘social support network’. There are always near and distant relatives living in the house that will help out.  So that a not so well to do family with a child with special needs will get some respite daily.  Some experts feel this ever present support might have a detrimental effect on the child developing social skills and thus the ability to live a relatively independent lifestyle. The logic is that if at all times there is a person at the child’s beck and call ready to carry out chores like bathing, dressing and feeding; he or she is unlikely to learn to do those things for themselves as quickly or as easily as the child living with one primary carer.

Another problem facing us here is the limited availability and access to specialised care. In Nigeria, only two universities offer physiotherapy as degree courses. Most of the physiotherapists we have around today pick up the skills through apprenticeship. This is not to say it is a bad way of learning. We just need more to cater for our population. Worsening this paucity of skilled care is an abundance of trado-psychic healers, claiming to have the answers. Bone healers, spiritual healers and exorcists, abound in our society. All you have to do is open a soft sell magazine to appreciate choice.

Prior to the 1970 education act in the U.K., not all children were deemed educable. Since then, it has been considered the right of every child to attend school, regardless of his or her disability. The system now recognises special educational needs and provides the opportunity to integrate them into mainstream schools. Even in resource rich countries, this system evolved over time and only quite recently.

It is not just the government that should provide the means and facilities to support such disabilities. Cooperate bodies need to wake up to their individual and coperate social responsibilities. Why do they build round a bouts (Nigeria is the only country I know where this is a major constructed edifice) that end up obstructing rather than easing traffic flow? Our banks and myriad of oil companies can be more active in easing access to qualitative health care. Build a children’s unit in the local hospital, sponsor training, provide drugs, furnish schools; there is so much to do. GT Bank commendably funds the Massey street children’s hospital in Lagos.

At the end of the day, with or without all the medical innovations, the path followed will mostly depend on what makes the child and parents feel more fulfilled. Is it the ability to tie laces on non existent or hand me down shoes? Or a smiling happy child surrounded with love?

Having a dependant with any permanent medical condition is tough. Imagine that dependant being an innocent young child. Imagine living with that child in a country with limited resources. This scene is a reality for the thousands living with disabilities in Nigeria today. Most of what happens and the course their life will take is neither predictable nor comfortable. Even with the best CT and MRI scans.

Resources points in Abuja

The Centre for children with Special Needs: 3 Lake Chad Crescent, Maitama.

A commendable effort of love.  To arrange a highly recommended visit, contact Mr Dare Adebajo, 08023053454

Garki hospital, Abuja

Physiotherapy: Rose Adindu: 08033304673

Orthopaedics: Dr Abdullahi: Wednesdays and Thursdays

Ear Nose and Throat: Monday and Thursday

Dentists: Daily clinic

Opthalmology/opticians: Daily clinic