Cerebral Palsy And Its Unending Stigma

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“I have to put up with the stigma,” said Mrs. Kubana Indara, a parent of a kid with Cerebral Palsy who spoke with LEADERSHIP at the event marking the World Cerebral Palsy Day.


Prolong labour may have damaged my baby

About a month to her Estimated Date of Delivery (EDD), Mrs. Kubana began to experience inexplicable stomach cramp.

At first, she thought it was just one of the usual pain as she bravely held and lived with it; a month passed, the pain increased and she could not hold on any more.

“At nights, I had serious pains, looks like labour, then by five in the morning, the pain becomes hunger, this happened for a whole month; at times, its water like fluid flowing from me,” she said.

Exactly a month after her EDD, Mrs. Kubana went for check up after being advised by a doctor who attended to her at the Kubwa general hospital in Abuja; where she was induced.

“I labored for eight hours, I thought I was going to die, I started around 10 in the morning but till six in the evening, I couldn’t make it, I lost much blood and I began to plead to be taken to the theatre,” she said.

Mrs. Kubana was finally rolled to the theatre and her baby was delivered by cecearian section but all was not well as the cry of the baby was not heard till the following day.

“After the operation, I saw the baby, he looked healthy, but the next day, he started crying and that broke my heart; the voice sounded like that of oh oh… I don’t know how to describe it, but it didn’t sound like the voice of a normal baby,” The mother said amidst silent sobs.

The development made her to quickly meet a doctor to tell her observations and the baby was taken for examination.

After several checks, the team working on the newborn though skeptical, released the report of not being able to locate the baby’s brain and that was the trouble.

The Stigma

As usual, Mrs. Kubana was greeted with the struggle to overcome rejection from nearly everywhere she turned, except her husband who stood by her.

She said, “It was at this time that I knew who loved me or not, people hurled a lot of unkind words at me and my baby, they called him imbecile, they called him snake; even my in-laws called my baby ‘this thing’, I was even advised to go and kill it.”

“The discrimination is really fierce,” said the President, Sedoo Initiative for Children with Special Needs, Mrs. kawan Anjira who pointed out that it was inhuman to treat special kids with such disdain.

She said, “these children have the right to life; they are being killed everyday, they are being regarded as snake incarnates, spirits, they are being killed, they also have a right to education, most of the classrooms can not take this children.

“They have a right to health, yet you can’t find a place where they could tell exactly what is wrong with the child and how to care for him or her,” she lamented.

Anjira who spoke at the awareness event themed: ‘We Are Here’, to mark the World Cerebral Palsy Day, said despite the fact that about 350 million people across the globe have one connection or the other with a relation who has the disease, the discriminatory attitude of people especially Africans had led the special kids living in denials.

In her welcome address, she said, “Cerebral Palsy simply is a brain damage caused by brain injury or abnormal development of the brain.”

She further called on the federal government and development partners to intensify effort in ensuring that kids with this form of disability are not only seen as worthy of having a good life but also considered for innovative programs that will help in training them to be independent later in life.


You may likely avoid having a baby with Cerebral Palsy if…

Meanwhile a Professor of Paediatrics at the University of Ilorin, Olugbenga Mokuolu stated that the condition, which primarily affects the development of the brain of a child for a lifetime, might be avoided if the pregnant woman was observant enough.

“I don’t think we were never in doubt as to what causes cerebral palsy; in fact we classically categorised the causes of Cerebral Palsy into those factors before delivery, during delivery and immediately after delivery,” he said.

According to the Paediatrician, the condition may have started with the mother, where there is a reduction in oxygen supply to the unborn baby or where the mother has some undetected and untreated infections during pregnancy or where the infant has severe jaundice caused by excessive bilirubin in the blood.

Mokuolu urged expectant mothers not to wait till things gets out of hand before they visit a paeditrician to complain, as that could be responsible for the damage.

“For a successful outcome of pregnancy, there are critical interventions and one word captures all the unfavourable outcome of the pregnancy which is failure; for instance, failure to anticipate the problem, to plan for the problem, to intervene in a timely manner against the problem, failure to institute appropriate action even when the problem had just started,” he said.

Prof Mokuolu also said, the normal thing to do for a pregnant woman in the process of delivery was to check if the woman could deliver the baby by herself; her pelvis is also being assessed, her baby too and then the decision on a proper manner of delivery is arrived at.

He added that when that is not taken into cognizance the woman could go into prolong labour which could inturn affect the baby at delivery.

He said, “if you don’t pick that, the woman goes into labour, stuggles in labour and then the condition precedent for cerebral palsy is established, so this is what I mean by one of the,” failures.

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