Twelve parents who attended physiotherapy on Friday 13th October, 2017, were the lucky recipients of GhC250 each from Mary Posch-Oduro, who was celebrating her birthday. The donation was made by Mary’s children. We say a big thank you, and may God bless you richly!
Sharecare Ghana calls for early diagnosis and early intervention for children with Cerebral Palsy
Today is being observed throughout the world as World Cerebral Palsy Day. In Ghana, the theme is: “We move together: Inclusion now”. Sharecare Ghana with funding from the Local Development Fund of Ghana Federation of Disability Organisations (GFD) carried out research on its members with Cerebral Palsy and their parents with the purpose of advocating for the rights of children with Cerebral Palsy and their parents/care-givers.
Sharecare Ghana hopes the preliminary research report (published below) will generate further research and attention from the government.
The relation between the quality of care given to a mother during labour and delivery, and the possibility of her child developing Cerebral Palsy or another disability, continues to be a debate between parents and health professionals.
As to whether this debate should continue, or whether there should be finger pointing, Sharecare Ghana in the spirit of World Cerebral Palsy Day believes the best option for parents-to-be, is to heed the instructions of the medical professionals, but also be courages enough to ask questions of the professionals and demand information, with the goal of reducing the chances of children born with Cerebral Palsy.
What is Cerebral Palsy?
Cerebral Palsy is a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is developing.
“Cerebral Palsy is a disorder of motor function and posture. It is a chronic motor disability; when I say motor disability I mean the ability of the child to move his or her muscles and how that child is able to maintain posture i.e. to sit and stand”, Dr. Antwi of the La General Hospital explained.
The word “cerebral” refers to the brain’s cerebrum, which is the part of the brain that regulates motor function. “palsy” describes the paralysis of voluntary movement in certain parts of the body.
Cerebral Palsy primarily affects body movements and muscle coordination.
Worldwide findings on Cerebral Palsy.
Population based studies from around the world report prevalence estimates of Cerebral Palsy ranging from 1.5 to more than 4 per 1000 live births or children of a defined age range. About 1 in 323 children has been identified with Cerebral Palsy according to estimates from CDC’s (Centers for Disease Control and Prevention) Autism and Developmental Disabilities Monitoring (ADDM) Network.
Sharecare Ghana, in the course of compiling a register of people with autoimmune and neurological conditions in 2011 in Accra, found a large concentration of children with disabilities in Osu a suburb of the capital Accra, most of them from very deprived backgrounds.
For this reason, and because facilities available for recommended therapies were not accessible to them, Sharecare Ghana set up a centre for children with neurological conditions in Osu-Anorhor. After assessment the majority were diagnosed with Cerebral Palsy. The centre provides physiotherapy, speech therapy and education placement for children with disabilities that are able to attend school, and counseling for the parents.
The centre now has over 50 children and an increasing number of parents trooping in for help, and this is beginning to overstretch the already burdened small facility. It begs the following questions: why are there so many cases of Cerebral Palsy in that community; who is researching the medical causes; what is being done to prevent it: what is society doing for the children and their parents; and what should the government’s responsibility be in all this?
Sharecare Ghana remains steadfast in its objective of providing accessible health care services to these children with Cerebral Palsy and other disabilities as it also seeks to acquire a new and bigger space for better services.
Experiences of Sharecare parents
For the purpose of research, not to find fault, Sharecare parents were asked what they thought had caused their child’s condition. It is no surprise that most of them blame the midwives or nurses, for they indeed are the first contact with the outside world.
Parents of 18 year old Richard said he was born with Cerebral Palsy because delivery was delayed for 24 hours.
“A day after going into labour, the head of the child showed up, and there was a lot of fluid that came out. They had to help the mother by pushing her belly, and all this while there was bleeding also”.
After realising that Richard’s skin colour was not normal, his mother alerted the midwife and was told to give him glucose, which she did, but there was no change in his condition. Hospital visits became their routine in search for a cure for little Richard.
Another member of Sharecare Ghana and a mother shared the story of her son, now six years old. Ebenezer’s birth was not without drama. “I gave birth to Ebenezer on the floor because when I felt the baby coming I immediately called for the nurses, but they told me it is not yet time for me to deliver. I brought forth moments after the nurses refused to attend to me.”
These are just two cases but the other mothers narrate similar experiences that call for further research. According to them, they did not receive good care.
What could be the problem? Could it be negligence or lack of professionalism on the part of the nurses and midwives or is it that the mothers for some reason are not adhering to the directives issued them before and after delivery.
At the point of delivery is Cerebral Palsy or another disability diagnosed? What equipment do hospitals and clinics have for early diagnosis? What information are parents given to manage children with Cerebral Palsy and other disabilities. And how early are management interventions started?
At the Sharecare Rehabilitation Centre, assistive devices such as sitting frames and corner seats are used for the children’s therapy from six months of age, because between 4 and 6 (sometimes 7) months babies should have attained the ability to sit independently. This aids the child to sit and not lie down for a long period of time. Standings frames are used when the child is 10 months old, which helps in pelvic stability to strengthen the muscles. Other devices such as gaiters, air splints and wrist splints are used to develop the movement of children with Cerebral Palsy.
The key issues here are prevention, early diagnosis and early intervention, and as we observe World Cerebral Palsy Day, Sharecare Ghana would like the government and health professions to give these issues more attention to make all Ghanaian children useful and relevant to our society.
Sharecare Ghana is an association of persons with autoimmune and neurological conditions, including families and care-givers.
Write up by Adwoa Adu and Christopher Agbega, Sharecare Ghana, and facilitated by the Local Development Fund of Ghana Federation of Disability Organisations (GFD). For more information, please contact firstname.lastname@example.org