[Read]...Taking care of a child with cerebral palsy

There was nothing to suggest that the birth of their third son, Olaoluwa, would be anything but a complete success, especially when he was delivered via a Caesarian Section, which was considered safe enough.

Olaoluwa was delivered prematurely and at birth, he had presented with the umbilical cord around the neck. The physician severed the cord quite alright, but it was one singular event that changed the course of the infant’s life — he suffered brain damage caused by a lack of oxygen (asphyxia) before the cord was cut.

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Child and Public Health Physician, Dr. Rotimi Adesanya, says nuchal cord (or Cord Around the Neck) occurs when the umbilical cord becomes wrapped around the foetal neck 360 degrees.

He explains, “Asphyxia, a lack of oxygen in the brain caused by an interruption in breathing or poor oxygen supply, is common in babies due to the stress of labour and delivery. But even though a newborn’s blood is equipped to compensate for short-term low levels of oxygen, if the supply of oxygen is cut off or reduced for lengthy periods, an infant can develop a type of brain damage called hypoxic-ischemic encephalopathy, which destroys tissue in the cerebral motor cortex and other areas of the brain.

“This kind of damage can also be caused by severe maternal low blood pressure, rupture of the uterus, detachment of the placenta, or problems involving the umbilical cord.”

Experts say the risk of cerebral palsy is higher among babies who weigh less than 2.2kg at birth or are born less than 37 weeks into pregnancy. “The risk increases as birth weight falls or weeks of gestation shorten,” experts warn.

Adesanya says most CAN cases are not associated with perinatal morbidity (disability) and mortality (death). He does agree, though, that in some foetuses and newborns “CAN may cause problems, especially when the cord is tightly wrapped around the neck.”

That was the case with Olaoluwa who is currently living with cerebral palsy, and once endured an 18-hour surgery to correct the curvature of his backbone as a result of his neuromuscular conditions. In order to make his back functional, his mom says, Olaoluwa, now 17, has 45 bolts and three rods implanted in his spine.

For retired Air Vice Marshal Femi Gbadebo and his ex-varsity don wife, Alaba, it’s been a journey of a life time showing unprecedented love to their son, while at the same time doing all that is possible to sensitise members of the public to the disorder, with the overall goal of helping indigent families who have children suffering from cerebral palsy.

Though the doctors did not suspect that the CAN had done some damage to Olaoluwa at birth, Alaba says she started noticing that something was wrong when, for the first three months after his birth, Olaoluwa was colicky and always crying.

“By the fourth month, he still didn’t have control over his neck and he choked on his foods, including the breast milk, as he simply couldn’t swallow anything. The disorder was only diagnosed when he was six months old,” Alaba says. When the reality of the situation dawned on her, Alaba realised that she needed much time to take special care of her son. She therefore gave up her job as a lecturer at the Kano State College of Science and Remedial Studies.

Each time they speak about Olaoluwa, the Gbadebos’ eyes light up with unpretentious affection, but Alaba confesses that taking care of a child with cerebral palsy requires so much — love and care, emotional balance and sackloads of money.

For one, because the patients cannot do anything independently, they need round-clock care, which Olaoluwa gets from his two nurses. Again, they lack control over their bowel movements, as such, they are always in diapers. For this, the Gbadebos import adult-size diapers for Olaoluwa’s use.

The drugs don’t come cheap either, Alaba confesses, as the young man needs sizeable dosages of daily medications which he takes three-hourly. “Some are to prevent seizures, others are meant to control his spasms, while others are meant to shield him from pain and infections, among numerous reasons CP patients take drugs,” Alaba explains.

And for mobility, Olaoluwa needs a good wheel chair which has to be changed as he grows.

Alaba also discloses that she once stayed in London for four years as she awaited an all-important surgical procedure to take care of a spine curvature which Olaoluwa had developed.

“During consultation, the London doctors made us realise that our son will be put in medical coma for three months after the surgery in order to prevent him from developing complications. That was too risky, so we brought him back home.  Later, we learnt that he could have the operation in India, which he did within a four-month stay.”

The Gbadebos say their experience with taking care of a challenged child has taught them that nothing in life should be taken for granted. They also say that if, with the resources at their disposal, they still feel overwhelmed with taking care of their son, they cannot imagine what families who have such children but lack material resources to take care of them pass through.

Consequently, they have launched Benola, a cerebral palsy initiative through which they hope to reach out to indigent families that are nursing children with cerebral palsy.

Gbadebo says, “Cerebral palsy is complex and is the single most expensive medical condition affecting children. This explains why it tends to place immense pressures on parents.

“The case is further compounded in a country like Nigeria where inadequate facilities and lack of trained manpower often make it difficult for parents to find reasonable and affordable options for managing such children, resulting in high infant mortality rate and untold hardship to parents who lack proper understanding of the condition.

“We at Benola do not claim to be authorities on the subject, but having lived with it for 17 years, we appreciate the problem. For that reason, we hope to become the lead supportive agency on cerebral palsy in Africa and a leading advocate for the rights of those living with the condition.”

The Gbadebos say they intend to use the Benola initiative to raise public awareness and understanding of the condition, determining a road map for its early detection and effective management in Nigeria, while also engaging in capacity building programmes for health care workers and families of those living with the neurological disorder.

The retired Air Vice Marshal enjoins companies and organisations involved in the production or marketing of pharmaceuticals, food, beverages, toiletries and sanitary products to identify with Benola. He hinges his plea on the fact that due to the peculiarities of the condition, those living with cerebral palsy are major users of their products.

“I call on them to identify with Benola in this noble cause to help make life better for an estimated 650,000 Nigerians living with cerebral palsy, and the other 13.5 million Nigerians who are closely connected to a child or adult living with it,” he says.

- Solaade Ayo-Aderele/punch

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