Limited healthcare impeding growth, shortening life-span of children with cerebral palsy
She sits with her legs crossed on the bare floor in a badly lit poorly ventilated room manning her two children aged 5 and 7, also sleeping on the naked floor.
No she is not under punishment nor is it deliberate; this has been the plight of 50-year old Madam Agartha Gyanoa since she gave birth to her two girls diagnosed with cerebral palsy (CP) through no fault of hers.
Upon noticing abnormalities during babies’ developmental stage, she visited the hospital a couple of times but stopped along the way due to financial constraints and lack of support system. She then resorted to herbal medications with no discernible impact.
Madam Gyanoa is in a world of her own, no source of income, no support system and cannot access health care for her children.
Limited healthcare for children in such condition spells doom for both mother and baby as they require a comprehensive healthcare to stay healthy and ensure proper growth.
Adequate care enables children with the condition the ability to use some parts of their bodies like hands and legs in a way that they become less burdensome on parents.
Cerebral palsy is a group of disorders that occur to a baby's immature brain as it develops. Symptoms include weak or stiff muscles, poor coordination, and seizures among others. Children affected by the condition may also have problems with hearing, swallowing, vision, speech and mobility.
Cerebralpalsyafrica.org notes that many families in Ghana have children with cerebral palsy but less number of physiotherapists and limited opportunities for treatment.
The bane of limited access to health care especially physiotherapy and support system has pushed many mothers in distress with some resorting to killing their children to live free of associated burdens.
In 2016, a news story of parents killing their children with the condition due to the challenges connected with caring for them such as limited access to healthcare, expensive health service in areas available, lack of support systems and abandonment by family.
Even Madam Gyanoa herself confessed attempting suicide twice on days when children were ill and hungry but has had neighbours intervene on two occasions.
Although there is no official data on the number of children with the condition in Ghana, Cerebral Palsy Africa (CPA) suggests that one child per 300 births has cerebral palsy and currently with only 212 practicing physiotherapists for a population of over 29 million.
Majority of the 212 physiotherapists are not specialised in cerebral palsy management in children.
"I'll be happier if there were more options to direct parents who are seeking for help (for children with the condition) as there are a few organisations providing services and equipment for children with cerebral palsy, it gets overwhelming and frustrating,” says Hannah Awadzi, Executive Director of Special Mothers Project, an advocacy awareness programme on cerebral palsy that advocates for favourable policies for families who have children with the condition.)
Madam Gyanoa is not the only parent struggling to access healthcare for her children.
Emelia Abbiw, a mother of 4 with a 10 year old son with cerebral palsy has experienced stigma undertones over years as a result of her child's condition and her inability to access care further deepens her woes.
She is much concerned about the health of her child and her inability to afford physio sessions because she's unemployed.
“I first heard about physiotherapy when my child was 2 years so I started taking him to the La Polyclinic for sessions and I noticed improvement.” she narrated.
“At a point I could not access the services and medications although the session was free. I had challenges with transportation so I stopped visiting and resorted to prayers.”
She mentioned that she witnessed marginal improvements during the sessions and would like to continue but I can't afford.
For Dora a mother of 3, she believes her inability to detect her pregnancy early caused her twins to suffer cerebral palsy.
Six months after birth, she observed changes in them and started seeking healthcare. The babies were diagnosed of cerebral palsy and she was advised to visit the hospital frequently for physiotherapy and other services.
"We started physiotherapy but had to stop sessions as caring for them took a toll on my work and I could no longer settle bills connected to it”
In 2018, she said, the eldest of the twins got seriously ill from cerebral palsy related condition and died after she administered some herbal drugs to her.
She readily admits that she would have lived if she had received physiotherapy sessions and proper care considering how quickly she responded to treatment at the initial stages.
"I strongly believe that if she had received medical attention, my daughter will still be alive"
She lamented transportation issues and the absence of community physiotherapy centers as major challenge and appealed to government to established specialised health facilities in communities to make it easier for such mothers to receive prompt services for their children.
Martha Gymafi had a similar story. With her 6 year old child living with the condition, life hasn't been easy. After several visits to the hospital, she was referred to physiotherapists but the service wasn’t for free so she ignored.
"I have no support system, no one to take care of her while I look for some work to do. I even have to lock her in the room sometimes to wash for people before I can make ends meet."
Cerebral palsy is a myriad of conditions that presents itself as a result of neurological damage to the developing brain, explains Sandra Asante, a paediatrician who has worked with children with cerebral palsy at Korle-Bu for 12 years.
"It is the brain that coordinates, tells us to move our bodies and helps us to do so many things so if cerebral palsy affects the part of the brain responsible for movement and a child has difficulty in movement, physiotherapists train the child to regain some of the things they lost.
We train them to move their neck, walk if they can but if not possible, we train them to be independent and do some things for themselves," She adds.
She urged mothers to take their babies to physiotherapists as early as possible if by three months the baby’s neck isn't holding, or the baby is very floppy, as all these symptoms are pointers to the condition and the brain can best be trained at the developmental stage.
As a physiotherapist for over a decade, lack of continuity of patient care has been a problem that she has had to grapple with on a daily basis.
"If not 80, 90 percent of the time, at a particular age we don’t see them (children with cerebral palsy) at the hospital again because as the child grows, it is difficult for parents to carry them and sources of funding gets depleted. We have been experiencing this since I started working and most of the cases are quite serious so we ask where they are. What is happening to them?" she queried.
Parents’ biggest challenge she says, is high transportation fare for physiotherapy sessions as the stigma attached to the condition forces them to board taxis which is quite expensive than using public transport.
Quite apart from the above, there are additional costs to caring for these children.
Access to assistive devices, medications and in instances where a child's condition requires eye and ear care and a visit to the neurosurgeon concurrently, bills shoot up.
According to Madam Asante, when a child suffers from cerebral palsy, it has a ripple effect on the family especially primary caregivers.
“The trauma and psychological problems has caused many divorces. There’s no support, the mother isn't able to work so government needs to financially support these mothers"
Accessible transport system, National Health Insurance Scheme (NHIS) supported medications and social support system would go a long way to improve the lives of these children while offering respite for mothers, she says
“Establishing community health centres for these children is the best because then there’s a dedicated place where the mother can access healthcare while cutting down cost. Once it becomes community centred, health workers help people to understand the condition better to reduce stigma” she advised.
Explaining the causes of cerebral palsy, Dr Yvonne Brew, a paediatrician who has worked with children with disabilities for 10 years and currently works at the Accra Regional Hospital said Cerebral palsy can affect a child in the womb, after birth, around the time of birth and genetic conditions from parents could be a factor as well.
In the womb, she explains taking certain drugs while pregnant, viral infections and genetic conditions from parents can predispose a child to cerebral palsy.
During delivery, challenges such as prematurity, prolonged labour and jaundice within the first few weeks after birth could also lead to cerebral palsy.
While some causes are preventable, others such as genetics factors cannot be controlled, she added.
She mentioned that diagnosing cerebral palsy isn’t straight forward." We avoid giving diagnosis in the first one year because we try to find out the exact cause as other conditions such as children born with inborn errors of metabolism have similar symptoms so you need to investigate to ensure accurate diagnosis."
For her, cerebral palsy should be managed holistically in order to reap the maximum impact since it affects many parts of the body and physiotherapy as a standalone is inadequate.
"All children in that situation need physiotherapy but not in isolation, because you’re not helping the child if you do it in isolation as it's a multidisciplinary approach. It is important that the management of cerebral palsy should be looked at holistically as a child with the condition may have issues with speech and needs a speech therapist, issues with fingers, gross motor skills (ability to sit, walk, stand, run),"
"Other children may lack in hand-eye coordination so might need occupational therapy, those with mental delays need a clinical psychologist and so a child needs all these to reap the maximum benefit of physiotherapy," she also said.
Although there are general physiotherapists, a few of them cater for children. Adding to that, physiotherapy care for these children is only available in the major referral hospitals in Ghana (Korle- Bu, 37 Military Hospital, The Ridge Greater Accra Regional Hospital, Komfo Anokye Teaching Hospital etc) which in turn has a toll on physiotherapy sessions as these centres are usually overwhelmed by attendance.
On some occasions, children with the condition would undergo one physiotherapy session per month instead of 3 to 4 times a week due to the pressure at these centres.
At the Greater Accra Regional Hospital for example, physiotherapy sessions is scheduled for Thursdays for children and on a typical physiotherapy day, it is common place to witness long queues of mothers with their children.
Attending to sessions is exceptionally hard and expensive for parents who live far from these major hospitals.
In an interview, with the Public Relations officer of Ghana’s National Health Insurance Scheme (NHIS), Barima Sarpong stated that there’s a provision for physiotherapy sessions in the scheme referring to the NHIS handbook Section 2 (e) which makes provision for out-patient physiotherapy.
The stipulated physiotherapy session makes no clear provision for children with cerebral palsy and it is pegged between 6-12 sessions a year. However, health experts say this is woefully inadequate considering the fact that a child needs about 3 to 4 sessions a week.
There is a need to have a working policy for children with disabilities so they are properly managed at centres that better understand the condition.
“Attrition rate is very high. Parents come to the hospital with children with the condition a couple of weeks and we don’t see them anymore- the next time you find out, the child is dead,” Dr Yvonne Brew noted.
“If a child with cerebral palsy receives adequate and good care, the child can live to adulthood like anybody else, participate and contribute to society like everybody else,” she added.
Although the struggle is typical of mothers in that situation, Mrs Awadzi, has a different story.
Unlike the others, she's educated and has over the years learned to manage her daughter’s condition through reading and watching physiotherapy and speech therapy videos.
She concurs that physiotherapy care should be prioritized however, there is more to it.
"We need centres providing rehabilitation where I can leave my daughter there, provided with all services she need so I can go to work”