Kenny Dagnon, 17, has a slight bump behind his right ear from a valve that was placed in his head when he was one year old.
The Senegalese youth had an operation for hydrocephalus, a medical condition in which an abnormal build-up of fluid causes the head to swell.
Leader of a youth chorus at church, Dagnon finished secondary school last year and is now studying international commerce. Many children with hydrocephalus do not get the chance to grow and learn as he has – partly because of the expense of treatment, but also because long-held beliefs about the deformity often stand in the way of care, according to Jean Christophe Sow, president of the National Association for Children with Hydrocephalus (ANEHS).
ANEHS – in a campaign dubbed “bring hydrocephalus out of the darkness” – is planning a series of events in the coming weeks, including a rally in the capital Dakar on 11 July, a first-ever national awareness day, an education campaign throughout the country and a telethon.
“People need to see that if you give a child with this illness a chance, he or she can succeed as well as any child,” Sow told IRIN.
Many families abandon hydrocephalus babies or hide them because of shame, instead of seeking treatment, he said. “Children with this disease die because of fear and ignorance.”
Dagnon plans to participate in the upcoming events and talk about his experience. “I hope I can help give [families affected by this illness] hope and confidence,” he told IRIN.
Hydrocephalus is a build-up in the head of cerebrospinal fluid – a clear fluid that bathes the brain and spinal cord, providing nutrients and carrying away waste. The abnormal accumulation causes acute swelling. It can be congenital but can also be caused by brain infections such as meningitis.
Seydou Boubakar Badiane, head of neurosurgery at Fann Hospital in Dakar, said beliefs that the deformity is a curse persist. But he said many families do seek medical treatment for the condition.
Treatment entails placing a valve in the head with a tube that diverts the excess fluid from the expanded brain cavity to another part of the body. Researchers are studying other treatments that do not require placing a foreign object in the body, which holds the risk of infection or obstruction.
Badiane pointed out that the earlier a child is treated, the better chance he or she has of living a normal life, provided there are no other health complications associated with the hydrocephalus. Left untreated, the condition can cause seizures, vision and hearing problems and eventually death.
He said hydrocephalus can be detected during antenatal exams and this can be crucial in planning for a caesarean delivery and health care of the infant.
Statistics
Badiane told IRIN he and his colleagues regularly see cases of hydrocephalus, but it is difficult to say how many people are affected nationally.
“We do not know how many children are affected by this; especially in rural zones, a lot of children are born and die with this condition,” he said. “We do not have statistics outside of what we see in hospitals; for each child coming to hospital there are perhaps three cases we do not see.”
ANEHS president Sow said he hopes it will soon be possible to gather reliable statistics about the illness, as people become increasingly open about it. Recent public announcements and media coverage of the condition have already started to pay off, he said.
“People call us regularly now and tell us about cases they know of in this or that household.”
In Senegal treatment costs about US$750 – unaffordable for many families. ANEHS is urging the government and private partners to subsidize treatment for children with hydrocephalus, Sow said.
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The Senegalese youth had an operation for hydrocephalus, a medical condition in which an abnormal build-up of fluid causes the head to swell.
Leader of a youth chorus at church, Dagnon finished secondary school last year and is now studying international commerce. Many children with hydrocephalus do not get the chance to grow and learn as he has – partly because of the expense of treatment, but also because long-held beliefs about the deformity often stand in the way of care, according to Jean Christophe Sow, president of the National Association for Children with Hydrocephalus (ANEHS).
ANEHS – in a campaign dubbed “bring hydrocephalus out of the darkness” – is planning a series of events in the coming weeks, including a rally in the capital Dakar on 11 July, a first-ever national awareness day, an education campaign throughout the country and a telethon.
“People need to see that if you give a child with this illness a chance, he or she can succeed as well as any child,” Sow told IRIN.
Many families abandon hydrocephalus babies or hide them because of shame, instead of seeking treatment, he said. “Children with this disease die because of fear and ignorance.”
Dagnon plans to participate in the upcoming events and talk about his experience. “I hope I can help give [families affected by this illness] hope and confidence,” he told IRIN.
Hydrocephalus is a build-up in the head of cerebrospinal fluid – a clear fluid that bathes the brain and spinal cord, providing nutrients and carrying away waste. The abnormal accumulation causes acute swelling. It can be congenital but can also be caused by brain infections such as meningitis.
 Children with this disease die because of fear and ignorance |
Treatment entails placing a valve in the head with a tube that diverts the excess fluid from the expanded brain cavity to another part of the body. Researchers are studying other treatments that do not require placing a foreign object in the body, which holds the risk of infection or obstruction.
Badiane pointed out that the earlier a child is treated, the better chance he or she has of living a normal life, provided there are no other health complications associated with the hydrocephalus. Left untreated, the condition can cause seizures, vision and hearing problems and eventually death.
He said hydrocephalus can be detected during antenatal exams and this can be crucial in planning for a caesarean delivery and health care of the infant.
Photo: ANEHS  |
| A child with hydrocephalus |
Badiane told IRIN he and his colleagues regularly see cases of hydrocephalus, but it is difficult to say how many people are affected nationally.
“We do not know how many children are affected by this; especially in rural zones, a lot of children are born and die with this condition,” he said. “We do not have statistics outside of what we see in hospitals; for each child coming to hospital there are perhaps three cases we do not see.”
ANEHS president Sow said he hopes it will soon be possible to gather reliable statistics about the illness, as people become increasingly open about it. Recent public announcements and media coverage of the condition have already started to pay off, he said.
“People call us regularly now and tell us about cases they know of in this or that household.”
In Senegal treatment costs about US$750 – unaffordable for many families. ANEHS is urging the government and private partners to subsidize treatment for children with hydrocephalus, Sow said.
np/aj
This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions
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