3 Nigerian Mums Talk About Nurturing Their Children Living With Cerebral Palsy
Some mothers share with PUNCH, their heart-rending journey laced with stigma and rejection as they care for children with cerebral palsy caused by jaundice.
With unsteady gait, nine-year-old Emmanuel wobbled to a bench and struggled to sit. After several failed attempts to maintain a balance landed him on the dusty floor, his mother, Chioma Maduka, helped him to settle down.
Constrained by his physical state, the boy watched with interest as other children played around him. Emmanuel has cerebral palsy and, according to his mother, it was caused by jaundice that was not promptly treated.
She claims her son was born normal but that things went awry days later. Chioma recalls going into labour at exactly nine months and had visited the hospital immediately, but she was sent home by a doctor because her cervix had not dilated.
Narrating her childbirth journey, Chioma said,
âI was already draining amniotic fluid, but the doctor asked me to go home. I gave birth at home the next day because I couldnât make it to the hospital again.
âThree days later, a midwife that visited me observed that my baby had jaundice. A test carried out in a private hospital confirmed it and we were referred to the Massey Street Children Hospital, Lagos Island, where he was given blood transfusion.
âEmmanuel was put in an incubator for two weeks, but we were discharged prematurely because there was no more money to pay for his treatment.â
Chioma says she later realized that something was wrong with her son when he couldnât attain the milestones expected of his age, adding, âHe couldnât crawl or walk. He would just sit in a place. I was devastated.â
Emmanuel, who still requires round-the-clock care, finally took his first wobbly steps at the age of seven.
Surviving on pittance
Maduka earns N25,000 working in a factory in Ajao Estate, Lagos, and laments that her life has been put on hold due to her sonâs state of health.
âI have not been to work for five days because of him. Each day that I am absent, N1,500 gets deducted from my salary. My parents that were helping have both died.
âEmmanuelâs father rejected him while I was still pregnant with him and had only seen him once since his birth.
âI am appealing for help to put him in a school for children with special needs; but, based on my findings, it costs so much. I love him as a son and Iâm committed to giving him the best, irrespective of his disability,â
Chioma said.
Multiple whammies
Mrs. Omoloye Ayobami, a nurse in Igando New Town, in Alimosho Local Government Area, shares a similar experiences with Chioma. For 27 years, she has lived with the burden and stigma of caring for her daughter, Timiade, who has cerebral palsy.
The woman recalls being diagnosed with an ovarian cyst before getting pregnant but decided to keep the baby against her doctorâs counsel.
âI was told it was a high-risk pregnancy and was advised to undergo a surgery to have both the baby and the ovarian cyst removed. I decided to keep my baby.
âI carried the pregnancy to full term. However, weeks into my third trimester, I started leaking amniotic fluid. I drained for two weeks and finally gave birth on May 27, 1993,â
she said.
Ayobami narrates that three days later, she noticed that her newborn had jaundice and immediately took her to the hospital. They were later referred to Isolo General Hospital, but because the baby needed to undergo a blood transfusion, they were referred to the Lagos University Teaching Hospital, Ikeja.
According to her, it was the peak of the doctorsâ strike and no one attended to her.
âI took my daughter home and started treating him with traditional herbs,â she said. However, by the time Timiade turned three months old, her mother noticed she was flaccid and had no neck control. She recalls:
âI took her to the National Orthopaedic Hospital, Igbogbi, from where we were referred to Massey Street Children Hospital.
âThe paediatrician at Massey said the jaundice had done so much damage and that she had developed cerebral palsy. We were referred for physiotherapy.â
SEE ALSO: Newborn Jaundice: Causes, Symptoms, Treatment, and Prevention
Though Timiade is 27 years now and has two children out of wedlock, her mother said it has been a journey of nearly three decades filled with tears, stigma, and rejection from the society and family members. She shared further:
âI was stigmatised by my in-laws and friends. Later, my husband died. At some point, people accused me of using her for money rituals.
âTaking care of her took a serious toll on me because I was not getting the necessary support. My mother-in-law refused to have anything to do with her. She told me the family doesnât know where I got âthis thingâ from because they donât have such in their lineage.”
Mrs. Ayobami told further revealed that two men took advantage of Timiadeâs disability and made her pregnant.
âThey denied having anything to do with her. She has a boy and a girl now and they all live with my mother,â Ayobami said.
Lucky escape
For Bukola Okeowo, her son, Jacob, narrowly escaped being disabled by jaundice. She recalls that it was detected on time and brought under control. In her words:
âI can recall the doctors telling me how lucky I was to leave the hospital with my son intact. They told me the level of jaundice in Jacob went above the threshold and could have turned him into a vegetable.â
Jaundice and irreversible disabilities
A Paediatric Consultant at the Gbagada General Hospital, Dr. Abieyuwa Emokpae, says many families reel under the burden of disability inflicted on their children by jaundice.
He warns that jaundice in newborns can cause deafness and irreversible neurological damage that may include seizures and cerebral palsy.
âUnfortunately, jaundice is not getting the necessary attention it deserves from healthcare providers and parents.
âIt is the most common cause of deafness in newborn babies. Usually, the deafness is high-pitched, so it is not easily recognised,â
he adds.
The expert explains that neonatal jaundice is the yellow discoloration of a newborn babyâs skin and eyes, adding that it occurs because the babyâs blood contains an excess of bilirubin, a yellow pigment of the red blood cells.
Speaking exclusively with PUNCH HealthWise, the child expert notes that bilirubin can cross the blood-brain barrier to cause lifelong damage, adding that neonatal care in Nigeria is inadequate and is partly due to cultural and parental attitude towards care of the newborn.
Troubling statistics
A study published in Healthy Newborn Network, a paediatric journal, states that it has been estimated that eight to nine percent of newborn deaths in Nigeria result from kernicterus, adding that affected newborns who survive are left with devastating cerebral palsy or deafness.
According to the Centres for Disease Control and Prevention, when severe jaundice goes untreated for too long, it can cause a condition called kernicterus.
It explains that kernicterus is a type of brain damage that can result from high levels of bilirubin in a babyâs blood, warning that it can lead to athetoid cerebral palsy and hearing loss.
Mayo Clinic explains that bilirubin is an orange-yellow substance made during the normal breakdown of red blood cells.
âBilirubin passes through the liver and is eventually excreted out of the body. Higher-than-normal levels may indicate different types of liver problems,â it states.
Cerebral palsy, Mayo Clinic further explains, is a neurological condition caused by brain damage, and is the most common motor and movement disability of childhood.
âIn general, cerebral palsy causes impaired movement associated with abnormal reflexes, floppiness or rigidity of the limbs and trunk, abnormal posture, involuntary movements, unsteady walking, or some combination of these.
âThere is no cure, but treatment and therapy can make a big difference,â
the online portal said.
Dr. Emokpae explains that neonatal jaundice is a yellowish discolouration of the whites of the eyes and skin in a newborn due to high bilirubin levels. He notes that it is common in preterm babies and other symptoms may include excess sleepiness or poor feeding.
âBilirubin is a naturally occurring substance in the body of neonates, but it becomes dangerous when its concentration in the blood gets too high,â he adds.
Continuing, Emokpae said,
âHigh concentration may cause bilirubin to accumulate in the grey matter of the central nervous system, potentially causing irreversible neurological damage that might include seizures and cerebral palsy.\\
The paediatrician says he is very particular about neonatal jaundice, as it can lead to devastating neurological consequences, thereby limiting children from achieving their full potential. The expert stated:
âIf bilirubin levels in a neonate rises over five milligrams within 24 hours, I will plan to have blood transfusion, as this is one of the signs that bilirubin levels are going to reach very high levels.
âMajorly, bilirubin can damage the brain. Generally, it is assumed that children with cerebral palsy are those who donât cry at birth, but they are unaware that jaundice in a newborn baby is capable of inflicting such lifelong disability.â
SEE ALSO: What You Need To Know About Cerebral Palsy
The expert further explains that in older children and adults, the lifespan of red blood cells from where bilirubin is obtained takes about 120 days. But the lifespan of the neonatal erythrocyte is only 60 to 90 days, with preterm infants having an even shorter life span of 35 to 50 days, thereby making excess bilirubin available to an immature liver.
WebMD notes that high concentration of bilirubin in the blood â medically known as hyperbilirubinemia â can cause jaundice, while high bilirubin in adults is an indication of a liver problem.
âNewborn babies are especially vulnerable to hyperbilirubinemia-induced neurological damage, because in the earliest days of life, the still-developing liver is heavily exercised by the breakdown of foetal haemoglobin as it is replaced with adult haemoglobin and the blood brain barrier is not as developed.
âBilirubin levels must be carefully monitored in case they start to climb, in which case more aggressive therapy is needed, usually via light therapy but sometimes even via exchange transfusion,â
Emokpae explained.
Types of jaundice in newborns
According to Dr. Emokpae, there are two types of jaundice in newborns â physiological and pathological; adding that their debilitating effects can, however, be prevented.
âPhysiological jaundice usually takes a natural course and does not require treatment. It usually comes down by itself.
âIt is usually very common in newborn babies and appears within 48 hours of life. It peaks on the fifth day and then declines.
âAlmost 75 percent of babies have jaundice and it usually rises above 12 milligrams in term babies and in pre-term, 15 milligrams.
âJaundice in the newborn baby shows at levels of seven milligrams in contrast to older children and adults at two milligrams. In most cases, treatment is not required, just light therapy (phototherapy),â
Emokpae explained.
On the other hand, pathological jaundice, the expert warns, is the most dangerous and can be caused by factors that include Rhesus disease, blood group incompatibility, and G6PD deficiency.
Experts say G6PD deficiency is a genetic disorder that most often affects males. It happens when the body doesnât have enough of an enzyme called glucose-6-phosphate dehydrogenase (G6PD). G6PD helps red blood cells work. It also protects them from substances in the blood that could harm them.
Symptoms can include paleness (in darker-skinned kids, paleness is sometimes best seen in the mouth, especially on the lips or tongue); extreme tiredness or dizziness, fast heartbeat, fast breathing or shortness of breath, jaundice (the skin and eyes look yellow), an enlarged spleen and dark, tea-colored pee.
Emokpae added that pathological jaundice presents within the first 24 hours of birth, with the total serum bilirubin level rising above five milligrams within 24 hours.
âPathological jaundice can be caused by an ABO incompatibility factor, where the motherâs blood type is O and the baby is A or B (inherited from the father).
âGroup O blood carries antibodies that destroy a babyâs red blood cells in the womb, thereby leading to high levels of bilirubin.
âAt birth, once the umbilical cord is separated from the mother, the babyâs immature liver is left to deal with these high levels of bilirubin. During pregnancy, this function is carried out by the motherâs liver.”
Rhesus factor and severe jaundice
Consultant Haematologist at the Department of Haematology and Blood Transfusion, Lagos University Teaching Hospital, Idi-Araba, Prof. Titi Adeyemo, says rhesus disease destroys the red blood cells of the newborn babies, noting, however, that the damage might vary from mild, to severe, and fatal.
âIf it is fatal, the baby will die in the womb. If it is severe, the baby will be born severely jaundiced and will require blood transfusion to manage or stop the destruction that has already started from the womb.
âSevere jaundice can damage the brain, leading to a condition known as Kernicterus that could cause cerebral palsy, among others,â
she said.
Adeyemo added that, more crucially, the only way a newborn baby can be protected from jaundice is by preventing a rhesus negative woman from making the antibodies in the first place.
ALSO SEE: Very Important Information On Rhesus Incompatibility Risks By Nigerian Physician, Dr. Atangwho
She says,
âIf a woman finds out her rhesus status early in pregnancy or before pregnancy through a simple blood test and she is Rh-Negative, she would be given the Rh immunoglobulin injection.
âDuring pregnancy, an antibody screen can be done to know if an Rh-negative woman has already started making antibodies to the Rh-positive blood of her foetus. This test can also show the level of the antibodies made.
âThe screening is carried out within the first trimester at 28 weeks or more often in order to monitor antibodies.
âIf, at any point, it becomes too high, the baby would have to be delivered early, kept in an incubator and treated with phototherapy.â
Role of infection
Another major cause of jaundice, the physician notes is an infection in the newborn. Emokpai says occasionally, congenital infection of the newborn is acquired from the mother.
âThis infection does not affect the mother but is passed to the baby,â he notes.
Saving newborns from jaundice
On what could be done to avoid jaundice, the paediatric consultant notes that during pregnancy, the blood group of a mother must be ascertained.
He explains that if blood group O or rhesus negative is identified, careful monitoring of the newborn is done after birth.
âIt is advised that babies should be kept for a minimum of 48 hours. If the mother has to be discharged within 24 hours, the baby should be reviewed in 48 hours.
âUnfortunately, this is not the case, as most parents and family members are in a hurry to celebrate childbirth.
âA woman will deliver a child in the morning and by evening, would insist on leaving the hospital. Yet, a mother could be fine but her infant might not be medically fit to leave, so, it is wrong to insist on being discharged.
âOtherwise, by the time they return to the hospital, it might be too late and the baby will be in crisis.
âMost mothers return with a child that is already brain damaged. We carry do blood transfusion to save the newborn. At such points, we can only save life, but they end up with a burden.
âI usually donât like to discharge babies I take delivery of until after 48 hours. I do tell parents that they have over 25 years to spend with a child after birth, and they should give me 48 hours to ensure babies are medically fit,â
he said.
SEE ALSO: How To Support A Child With Cerebral Palsy
Emokpae further notes that other ways of preventing jaundice include breastfeeding immediately after birth, avoiding icterogenic agents (causing or tending to cause jaundice), keeping newborn babyâs umbilical cord clean, and taking delivery in a clean place.