Our project "Hydrocephalus: No Longer a Death Sentence" is a comprehensive effort to reduce pediatric morbidity, mortality, and stigmatization due to hydrocephalus in Lower Guinea, where hundreds of children suffer from the disease and almost all die by age 3.

Hydrocephalus Project

What is hydrocephalus?

Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as “water on the brain,” the “water” is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain. Hydrocephalus may be congenital or acquired. Congenital hydrocephalus is present at birth and may be caused by either influences that occur during fetal development or genetic abnormalities. Acquired hydrocephalus develops at the time of birth or at some point afterward. This type of hydrocephalus can affect individuals of all ages and may be caused by injury or disease. Certain spinal and cerebral conditions, such as spina bifida or tumors, can cause hydrocephalus to develop, either as a secondary circumstance or as a result of necessary treatment.

It is estimated that 1 of every 500 children born around the world is affected by hydrocephalus. In infants, the cranial plates have not yet fused, making a baby’s skull soft and malleable. When hydrocephalus occurs in babies, therefore, the build up of fluid causes the circumference of the head to increase alarmingly. At the early stages of a child’s life, any disruption in normal development can have serious and often permanent repercussions. It is extremely important to diagnose and treat this disease as early as possible, to assure the best possible chance of full recovery.

Hydrocephalus in Guinea

In Guinea, almost no hydrocephalus services are available.  Shunts and medical supplies needed for surgery are extremely expensive and scarce. Public hospitals lack ultrasound and CT scan equipment to detect hydrocephalus at an early stage.  Post-surgical physical therapy,  critical to help children develop or re-gain motor skills, is not typically available, particularly to the poor.  Because of local beliefs that individuals with hydrocephalus are possessed by evil spirits, many children with the condition are malnourished, abused, and neglected, often hidden by family members until they pass away. The stigma is such that parents who seek aid for their children are not allowed to use public transportation. This, in addition to the extra weight added by the accumulated spinal fluid in the head, makes transportation almost impossible.

AFG’s “Hydrocephalus: No Longer a Death Sentence”

In July 2010, our Health Program Director, Mrs. Bebe Kourouma, met Mrs. Fadiga, the president and founder of the Association of Mothers of Children with Hydrocephalus in Guinea (AMEHG). Mrs Fadiga, whose daughter suffers from hydrocephalus, created this organization to provide support to the parents of other affected children and raise awareness in the community. A partnership was immediately established, and AFG begun to assist AMEHG and fund hydrocephalus operations.

In 2011, AFG developed a brand new strategy to ensure the success of this joint enterprise. This innovative project, spanning five years, will not only provide the equipment and supplies necessary to perform life-saving operations, but will also focus on early diagnosis, a comprehensive treatment protocol and support for recovering patients and their families. In addition, AFG will coordinate training and exchange sessions for Guinean doctors and physical therapists, as well as working on educational activities and material that will provide information on the disease and its treatment, to be distributed to the general public. We hope to raise awareness amongst the Guinean government and population so that Hydrocephalus is recognized as the devastating disease that it is, and suitable action is taken to diagnose and treat the hundreds of children who are affected by it.

Thanks to the generosity of our supporters, AFG was able to raise enough money to purchase an ultrasound machine, which is an essential tool in early diagnosis of the disease. But this is just the beginning. Thanks to CURE, Dr. Ibrarma Souare was able to attend a Surgeon Training Program in Uganda. They have also provided referrals to families from Gambia and Sierra Leone and coordinated their travel to Guinea for surgery. This has allowed us to offer our assistance to suffering children even outside of Guinea.

We have made tremendous progress towards our goal of ensuring that hydrocephalus is no longer a death sentence in Guinea. But there is still so much more to be done and we need your help to make it happen.

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  • We thank AFG for its support and hope to continue working with them to help women suffering from obstetric fistula. — Moustapha Diallo, Engender Health Program Director

  • AFG needs your help! We depend on contributions from foundations, companies and individuals to continue our work in Guinea.

    Our primary goal is to assist hospitals and health centers in Guinea who care for the welfare of the Guinean population. We do this by providing medical aid, improving and upgrading existing infrastructure in health facilities and implementing disease prevention and treatment programs.

    We also aim to improve the overall quality of life of the population by supporting and promoting economic growth and technical development.

    You can make a difference!