[Congressional Record (Bound Edition), Volume 157 (2011), Part 9]
[Extensions of Remarks]
[Page 12897]
[From the U.S. Government Publishing Office, www.gpo.gov]




  HYDROCEPHALUS TREATMENT IN UGANDA: LEADING THE WAY TO HELP CHILDREN

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                         Friday, August 5, 2011

  Mr. SMITH of New Jersey. Mr. Speaker, as the Chairman of the 
Subcommittee on Africa, Global Health, and Human Rights, I held a 
hearing on August 2nd on the global health issue of hydrocephalus, a 
serious--and seriously neglected--health condition. The hearing also 
focused on a relatively inexpensive, technologically-sophisticated 
advancement for curing it, created, designed, and perfected by one of 
our distinguished witnesses, Dr. Benjamin Warf.
  I had the opportunity to learn more about hydrocephalus when I was 
traveling in Africa last March. Children who suffer from it 
characteristically have heads that are far out of proportion to the 
size of their small bodies. I was horrified to learn that in Africa, 
where superstitions still are widespread, hydrocephalus is commonly 
perceived as a curse or caused through witchcraft. A child may be 
subjected to horrific abuse, and even killed, as a result. It was 
therefore a real eye-opener for me to see the cultural context of 
hydrocephalus in Africa, and the extraordinary efforts of a number of 
courageous, compassionate individuals to address it.
  The human brain normally produces cerebrospinal fluid which surrounds 
and cushions it. The fluid also delivers nutrients to and removes waste 
away from the brain. This fluid is drained away from the brain and 
absorbed into blood vessels as new fluid is produced.
  Hydrocephalus occurs when this draining process no longer functions 
properly. The fluid levels inside the skull rise, causing increased 
pressure that compresses the brain and potentially enlarges the head. 
Symptoms include headaches, vomiting, blurred vision, cognitive 
difficulties, imbalance, convulsions, brain damage, and ultimately, 
death.
  Hydrocephalus can occur in adults, but most commonly is present at 
birth. Our witnesses testified that there are believed to be more than 
4,000 new cases of infant hydrocephalus in Uganda, and 100,000 to 
375,000 new cases in sub-Saharan Africa, each year. By comparison, in 
the United States, hydrocephalus occurs in 1 out of every 500 births. 
Another 6,000 children under the age of 2 develop hydrocephalus 
annually. The U.S. National Institutes of Health estimates that 700,000 
Americans have hydrocephalus, and it is the leading cause of brain 
surgery for children in this country.
  A major difference between the United States and sub-Saharan Africa 
is the number of neurosurgeons available to treat this condition. The 
U.S. has 3,500 neurosurgeons, whereas Uganda, for instance, has only 
four.
  Another major difference between the United States and sub-Saharan 
Africa is the methodology used to treat hydrocephalus. In the Western 
world, doctors surgically insert a shunt into the brain in order to 
drain the fluid through the neck and into another part of the body 
where the fluid can be absorbed. A shunt is only a temporary solution, 
and there is always a danger that any one of a number of things may go 
wrong. For example, the tube may become blocked, an infection may 
develop, catheters may break or malfunction due to calcification, or 
the valve may drain too much or too little fluid. In almost half of all 
cases, shunts fail within the first two years. And when they do, the 
patient must have immediate access to a medical facility and a doctor 
who can correct the problem.
  This precarious situation must be a constant source of concern and 
stress for people in the United States who suffer from hydrocephalus 
and their families. However, in a place like sub-Saharan Africa, a 
shunt is fundamentally impractical. Trained neurosurgeons, as I noted, 
are extremely few in Africa, as are properly equipped hospitals. And 
roads and transportation systems on the African continent make travel 
arduous and long for the vast majority of people under even the best of 
circumstances. A hydrocephalic child in a place like Uganda, even if he 
or she could be treated with a shunt, would have little hope of living 
for more than a couple of years.
  Mr. Speaker, in March of this year, I had the privilege of meeting 
Dr. John Mugamba, one of the four neurosurgeons in Uganda. With the 
help of a video such as we viewed during the hearing, Dr. Mugamba 
explained the fascinating surgical procedure that he is performing 
several times daily in Uganda to cure small children of hydrocephalus. 
This treatment being provided at CURE Children's Hospital of Uganda is 
not only overcoming a medical barrier that children afflicted with the 
condition face; it is also serving to educate Ugandan communities that 
the condition is not the result of a curse and is not a reason to kill 
the child. Parents whose children have been cured are helping other 
parents to identify the condition early in an infant's life, and to 
know where to go for treatment.
  Dr. Warf was the first to identify neonatal infection as the chief 
cause of pediatric hydrocephalus in a developing country. He also 
developed the new surgical technique, a combined endoscopic third 
ventriculostomy with bilateral choroid plexus cauterization (ETV/CPC), 
which holds great promise not only for the children of Africa but 
potentially for children in developed countries as well. As Dr. Warf 
testified, hydrocephalus has never been a public health priority in 
developing countries. Most infants in Africa do not receive treatment, 
and even when treated, they often succumb to a premature death or 
suffer severe disabilities.
  Mr. Speaker, it is imperative that we find the causes in order to 
develop public health prevention strategies. Our distinguished 
witnesses explained this innovative procedure, efforts being undertaken 
to determine the causes of hydrocephalus, and initiatives to end the 
suffering caused by this life-threatening condition. I plea with all 
stakeholders who care about the children of Africa, including African 
Ministries of Health, non-governmental organizations, and our own U.S. 
Agency for International Development, to urgently provide tangible 
support to these efforts and initiatives.

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