In this report, AKINWALE ABOLUWADE of the Nigerian Tribune writes about a family whose child is down with hydrocephalus, fluid in the brain, with reference to what experts say.
Years after the birth of Taiwo and Kehinde Yusuf, their parents, Isiaka and Rashida, are emotional wrecks as their hope for succour appears bleak. The joy of being blessed with the twins fizzled out six months after their arrival into Yusuf’s family as the parents struggled to seek medical intervention for one of them. While Taiwo remains hail and hearty and full of life, Kehinde is battling with an excruciating medical condition called hydrocephalus.
He was said to have been taken to nine different hospitals in search of medical intervention within the first two years when the problem reportedly manifested. At the University College Hospital (UCH), Ibadan, Kehinde was diagnosed with hydrocephalus, enlargement of the head resulting from continuous discharge of fluid into the head.
When met, Isiaka and his wife said: “We have known no peace since Kehinde’s case manifested. According to them, Kehinde did not have any known medical problem at birth. Their father, a petty trader, said: “The twins were doing fine when they were born and the hospital did not tell us that Kehinde had a medical condition. Like his brother, he had lived a normal life until he was six months old.
One day in March 2010, Kehinde had developed acute body temperature. After all efforts at giving him first aid treatment failed, the parents said that they took him to Ado Awaye General Hospital, Iseyin for treatment. Isiaka claimed that during treatment fluid was passed through his head. The little boy regained his health and was discharged. Few weeks after, the parents said that they noticed that Kehinde’s head began to swell up.
His father said: “When we went back to the hospital they were on strike so we moved to another hospital. But the situation continued to deteriorate and we were going from one hospital to the other for two years until we were referred to UCH from Awojobi Trado-Medical Hospital. I sold my property including my car to meet the cost of treatment but we are still struggling to save his life.
A member of the family told Insideoyo.com that the family now needs N530,000 for the operation.
“He is in pain and this condition grieves our minds everyday. We appeal to kindhearted Nigerians to help to fund his treatment Kehinde AbdurRaheem Yusuf, Guarantee Trust Bank 0151945965.”
The Chief Physiotherapist that is managing the boy’s case, Ogundapo Femi, said that: “Kehinde is a good boy. He is presenting with hydrocephalus, increased size of head. It happens when there is increase of cerebrospinal fluid in the cranium. It leads to cranium enlargement. When this happens, some parts of the brain cells will be affected (dead). The pressure will prevent parts of the brain from developing normally.
“Usually when brain cells die they don’t regenerate. When this happens, the part of the brain that is affected loses its functions. When this happens the part is dead and the other part that is meant for other functions can take over parts of the responsibilities of the affected part. With time they begin to pick up but they may not function to full capacity.
“When Kehinde was brought to the hospital he came with this case. For a child in this condition there may be a delay in their developmental milestone while some of them may not be able to attain this milestone. At three months, a child should be able to have a good control of the head and turn the neck. By two months, a child should be able to identify his primary health giver (the mother) that breastfeeds him and the father. By six months he should start sitting without any support. By six months or seven he should starts to crawl, by nine he should be holding things in attempt to stand. By one year to 13 months he should start to walk. These are developmental milestones for a child but for Kehinde, due to the peculiarities of his condition, he has delay in attaining these milestones”.
The physiotherapist explained that the ability to use the muscles is triggered in the brain. However, a child with hydrocephalus usually has motor (movement) difficulties. A child with that condition might not sit at four months, might not crawl at six months and might not walk at 13 months. He said they could start sitting at 12 or 14 months depending on the severity of the damage to the brain.
Making particular reference to Kehinde’s case, he said: “When he came to us he had no motor activity but is quite intelligent. He would follow your movements with the eyes but could not move the head because it is big and the muscles are weak and he could not move the hand. But now, he starts moving the hands and some other parts gradually until the parents ran into financial difficulties and they could no longer bring him to the hospital. He is nine years old now and his twin brother is in primary four while Kehinde is just starting nursery school.
“If he is kept in therapy he could be made as independent as possible because he is getting bigger and a time is coming when nobody will be able to carry him”.
Ogundapo said that Kehinde’s independence would enable him to go to school. But if he is not in therapy this could not be achieved. He, therefore, appealed to members of the public to come to his aid in order to give the boy hope as the parents no longer have the required funds for his treatment.
Asked of the amount that is required for his treatment, Ogundapo said that the treatments are in stages hence it would be difficult for him to put a cost to it.
Usually in this society pregnant mothers habitually delay before registering for antenatal. Findings show that most pregnant mothers come for antenatal for the first time between five and six months after conceiving.
This, experts say, denied them access to timely medical intervention. While it is required that intending mothers should be taking folic acid and other nutrients when planning to conceive, most women allegedly take it for granted. Some experts attributed attitude of mothers to deviance and lack of adequate information.
Ogundapo said : “As cheap as folic acid is, if you don’t take it during pregnancy it can have a costly effect on the child. For instance, for children like Kehinde, at the time that the organs of the body should develop the mothers did not use supplement. The neural tube was not fully developed. The tube should form a ring and close. If it does not close it would have openings that would sip fluid.”
The fluid, he explained, would enter the cranium and result in increase in the size of the head as a result of pressure. Also, he said that infection such as meningitis could cause the pressure that could lead to increase in the size of the head, adding: “The brain must occupy a particular side of the skull. When a growing child has fluid in the brain the head will increase to accommodate what is inside”.
Experts say that managing this condition usually lasts the child’s entire lifetime because it is very rare to completely overcome the condition. As such, a holistic management of the medical condition is required. The physiotherapist said a special teacher would be needed teach such a child because he would need Individualised educational programme (IEP) to cope.
“IEP would fast track his learning. If you put Kehinde or any child with that condition in a mainstream school he might not learn as fast as other children. He needs a pediatrician. He needs a surgeon, the social worker and the entire medical team.
“Providing for children with this type of case is not easily affordable. It is usually capital intensive but one cannot be specific. A special teacher will be paid and that is continuous, cost of surgery is there, physiotherapist etc. He has to come for physiotherapy four times a month and the neurological condition which Kehinde presents usually takes a very long time. It is not like someone sprained ankle where you expect to come out of it in about three weeks.
“Each stage of development comes with different challenges and if he does not come for therapy the parents might not know how to overcome the challenges as they come. But the good thing is that Kehinde is developing. He is beginning to talk and move parts of his body. These are good signs that he is going to improve. But he might still have specialised needs even as an adult”.
Although there are cases of hydrocephalus in developed countries, it is prevalent in developing countries of the world. Ogundapo said that children with such a case form 60percent of the cases being referred to UCH. According to him, about four new cases are reported in the teaching hospital weekly.
