Families with children that suffer from Cerebral Palsy (CP) have learned how to navigate systems; giving up their career, most time, especially the women for family’s needs; and becoming a support and advocate for such children.
Mrs Asaju (not real name), whose six year’s old child was diagnosed of the condition when she was barely a year old, said her child’s condition forced her to acquire new skills and re-focused not only her life but that of her family.
“Her condition has made us intentional parents, who constantly think about how we can keep our daughter’s needs from taking over our family, while making sure her siblings’ needs are also met. It has brought us closer as a family, taught us the value of family and community, and helped us learn to cherish every little thing about our children.
“Having a child with special needs changed everything: because I now know the effect raising a child with special needs has on the entire family and how hard it is to learn about and access the multitude of needed services, I feel compelled to help other families through this process any way I can,” she said.
A medical expert with Kuje General Hospital, Dr William Udeme, said the word “cerebral’’ means having to do with the brain, while “palsy” means weakness or problems with body movement.
He defines cerebral palsy as a group of disorders that affect muscle movement and coordination, adding that in many cases, vision, hearing, sensation and others are also affected. “It is a congenital disorder of movement, muscle tone or posture. Cerebral Palsy can affect a person’s posture, balance and ability to move, communicate, eat, sleep and learn.”
The expert said, the definitive diagnosis of cerebral palsy should be done by a specialist in the field of children medicine (Pediatrician) after a thorough history (especially the medical, ante natal, intra partum, and postpartum periods), physical examination with emphasis on neurological examination, as well as adequate investigations (mostly brain imaging etc.), developmental monitoring and screenings have been carried out.
Dr William said the condition can be Congenital or Acquired. “Cerebral palsy relate to brain damage that happened before or during birth is called congenital cerebral palsy. The majority of cerebral palsy (85%–90%) is congenital. In many cases, the specific cause is not known. The remaining percentage, falls under acquired cerebral palsy and usually occurs after 28 days from birth.
The expert, while quoting the Centre for Disease Control, said the condition is one of the most common causes of motor disabilities in childhood, adding that at least 1 to 4 out of every 1,000 children worldwide are affected. “More than 100,000 cases are diagnosed per year in Nigeria.’’
He said the cause of cerebral palsy is a brain injury or brain malformation that occurs while the brain is developing before, during, or after birth.
“As a result of the brain damage during brain development a child’s muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected. But in most cases, the exact cause of cerebral palsy is not known.”
Medical experts say that some of the possible causes include: prenatal disturbance of brain cell migration, Prenatal poor myelination (insulation) of developing nerve cell fibers, Asphyxia neonatorum, or a lack of oxygen to the brain during labor and delivery, gene mutations that result in abnormal brain development, severe jaundice in the infant, maternal infections, such as German measles and herpes simplex, and brain infections, among others.
“Every case of cerebral palsy is unique to the individual. This is due to the part of the brain affected, the type of injury, extent of injury, and the timing of injury to the developing brain,” the medical expert, said.
Dr William said that certain factors that put babies at increased risk of cerebral palsy include, premature birth, low birth weight, being a twin or triplet, a low Apgar score, which is used to assess the physical health of babies at birth, breech birth, which occurs when your baby’s buttocks or feet come out first, Rh incompatibility, which occurs when a mother’s blood Rh type is incompatible with her baby’s blood Rh type, maternal exposure to toxic substances, such as methyl mercury, while pregnant, and others.
According to him, symptoms include exaggerated reflexes, floppy or rigid limbs and involuntary motions. These appear by early childhood and people may experience difficulty in walking, difficulty with bodily movements, muscle rigidity and others. “They also experience developmental failure, speech disorder or stuttering among other symptoms.”
He said the goal of treatment is to improve limitations and prevent complications, while treatment for cerebral palsy is multifaceted, often requiring multiple health personnel and specialists, doctors and various therapies.
“Early treatment usually has the greatest chance of improving a child’s condition though treatment depends on severity but long-term treatment includes physical, assistive aids, and other therapies, drugs and sometimes surgery.
He added that it was important to make a complete diagnosis of the specific type of cerebral palsy that a child has, in order to get the right kind of treatment. This includes diagnosing the spectrum of conditions (behavioral disorders, speech impairment, etc.) that may accompany it.
Research revealed that 1 in 3 children with cerebral palsy will be unable to walk. At greatest risk are those who have spastic quadriplegia, intellectual disability, epilepsy, vision impairment and an inability to sit independently at two years of age.
Also, 3 in 4 children with cerebral palsy experience pain which is often a result of the impairments that are associated with cerebral palsy e.g. contractures, abnormal postures, dystonia, skin breakdown, hip subluxation (partial dislocation of the hip) and scoliosis.
A cerebral palsy diagnosis can be reached when symptoms are present and a brain injury can be found. Most cases of cerebral palsy, up to 70 percent, are diagnosed during a child’s first birthday, with 43 percent of severe cases being diagnosed in the first months of life.
Children with cerebral palsy also dream of doing great things in life like every child despite their challenges
The consultant further said that majority of the problems that cause cerebral palsy could always be prevented, explaining that if a woman is pregnant or planning on becoming pregnant, she could take certain preventive measures to minimize complications.
“It is important to get vaccinated against diseases that can cause fetal brain damage, receive adequate prenatal care. Attending regular appointments with your doctor during pregnancy can help prevent premature birth, low birth weight, and infections. Also, having the labor and delivery process attended to and closely monitored by appropriately skilled health care practitioners is important,’’
Other measures are, treating childhood infections promptly and adequately, avoiding contact sport in children and adequately protecting children during outdoor sports to avoiding head injuries, violent throwing up of children and child abuses.
For now, he said, there is no cure for cerebral palsy, but the condition can often be treated and managed effectively. “The specific type of treatment varies from person to person. Some people with cerebral palsy may not need very much assistance, while others might need extensive, long-term care for their symptoms.’’