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Children’s ward in the National Hospital, Entebbe. |
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| Dr. Benjamin Warf, Professor of Neosurgery, Harvard Medical School |
He also founded a hospital with the help of CURE International, a charitable organization which builds children's hospitals worldwide. Most of them are orthopedic, but Ben was a neurosurgeon for children. And this would be the first and so far only dedicated hospital to children's neurosurgery in the developing world.
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| Dr. Moses Ochora, Pediatrician at Mbarara University of Science and Technology, CONRIM-U project investigator |
While there Dr. Warf discovered a strong correlation between the Hydrocephalus (“Water on the Brain”) cases he was seeing in infants there, and an infection early in life. These infections also seemed to correlate to instances of Neonatal Sepsis (a severe infection in the first month of life). He began doing studies.
The standard treatment for hydrocephalus was to put in a
shunt, which drains the fluid in the brain to the abdomen. But shunts can have up to a 30-40% failure
rate each year, and when they fail it can prove fatal unless the infant can get
to a hospital right away – a dim prospect in the remote villages in Uganda.
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| Grace, one of 800 recruits for the Village Health Team |
There is another common treatment called ETV (Endoscopic Third
Ventriculostomy), which didn’t provide as much success as Dr. Warf hoped for. So he added another older procedure called CPC
(Choroid Plexus Cauterization – don’t ask) and his success rate markedly
increased. And if the procedure did
fail, there was more time to get to a hospital.
Ben first reported this finding in 2005 in the Journal of Neurosurgery. He had single handedly alerted surgeons throughout the world that they should reconsider current practice for hydrocephalic infants, and that there was an important voice for improving the surgical care of these children throughout the world coming from a small hospital in Eastern Uganda. Ben received the MacArthur Prize (the ‘genius award’) for his work on infant hydrocephalus in 2012. He is now the Director, Neonatal and Congenital Anomaly Neurosurgery, and Professor of Neurosurgery, Harvard Medical School.
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| Inside a neonatal NICU. The hospital is on a shoestring budget but hope lives here. |
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| Premature twins at the Jinja Regional Referral hospital. |
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| Dr. Steve Schiff, Harvey and Kate Cushing Professor of Neurosurgery at Yale, Vice Chair for Global Health in Neurosurgery, and Professor of Epidemiology in School of Public Health |
Dr. Schiff had always wanted to do work in Africa since he
was 11. While in Uganda he noticed that
every day there would be at least 2 or 3 of these babies with large heads
coming from all over the country in the arms of their mothers to the door that
hospital.
At the end of the week, Steven looked at Ben and said, “Ben,
you have a lot of problems practicing neurosurgery here in Africa. What's the most important problem you can't
solve?”
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| Dr. Abraham Muwanguzi, PhD Manager, Science and Technology department, NPA; Team Lead – Policy and Planning, Office of Science, Technology and Innovation Secretariat, Office of the President, Uganda |
“Well, Steve, maybe you could help figure out what makes
these kids sick.” And Steve immediately
replied, "Okay". “How hard can it be?” he
asked himself, naïvely.
Turns out it was plenty hard. The first problem was getting funding. After many failed attempts, he landed a high-risk, high-reward research grant from the National Institutes of Health (NIH). He says it was a blessing because nobody knew how to solve this problem.
“Shockingly, we have little idea what the majority of the
pathogens are that cause young infants after birth to get infected”, says
Steve. “And the numbers are hard to come
by. We think we lose anywhere from half a million to maybe three quarters of a
million newborn infants in the first four weeks of life to infection around the
world. I've testified to Congress about that.”
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| Henry Masengere, Microbiology Lab technician |
It took 20 years for Dr. Schiff and his team of diverse
experts to find the cause of the infections: It is a new strain of a bacteria
that was previously thought to be harmless, Paenibacillus thiaminolyticus, which
the medical community had known about since 1950 but this is a much more
difficult strain. It’s difficult to
culture and grow using conventional methods.
It eats Thiamine. It grows spores,
so it might be as lethal as Anthrax to those who come in contact with it. And it was found in the brains of the infants
at 2 or 3 months of age, when they came in for treatment.
Now What?
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| Ronnie Mulondo, Associate Research Scientist, Yale School of Medicine, dept. of Neurosurgery |
With the Paenibacillus bacterium identified, Dr. Schiff is now in the process of shifting gears: he is now on a dual mission to discover better treatments, and also to understand how these children are getting infected to begin with. Is it the soil? Something in the water? Is it being inherited from the mother? (That last option has been ruled out.) Could it be the practice of putting various materials (sometimes including cow dung) on the babies' open umbilical cords just after birth?
Dr. Schiff has been working the political end of the
spectrum as well, since you just can’t show up in an African village and say,
“Hi, your babies have a had a bad infection and we'd like to learn where it
comes from and put holes in your farm fields and test your water and the dung
from your animals.” The people there are
incredibly poor, and most of these villages don't have running water or
electricity. They're trying to raise their children in these difficult
environments. “We’re working with villages
where children with these conditions have terrible early starts to life and
often suffer the stigma of being a diseased or disabled child. So we have to
have a lot of sensitivity.”
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| The team at the children’s ward at Madhvani Childrens' Hospital. |
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| Dr. Jessica Ericson, Pediatric Infectious Diseases physician at Penn State University |
So he is setting up a massive field project in Uganda in one
of the worst hit areas from these infections. To this end his team has just recruited over
800 people for their Village Health Team (VHT) army, whose job will be part
prenatal care and part medical ambassador to the villagers who are skeptical of
modern medicine and often prefer using traditional healers. “People in my village never wanted what we
call immunization”, says Grace Nakato,
one of the VHT members who has been working as a medical ambassador since
2008. “But through education, step by
step people are beginning to accept the idea.
Same with counseling for HIV and family planning. Pregnant women never went to hospitals before
either. It was said that pregnant women
shouldn’t use the toilet because the baby might fall into it. Now they are getting neo-natal care at the
hospitals starting at 8 weeks before birth.”
“The VHT’s will be our eyes and ears on the ground”, says Dr. Schiff. “It should result in higher immunization rates, we'll be able to monitor and observe almost every case of neonatal sepsis and another preventable condition, which is a congenital abnormality called neural tube defects or spina bifida, those are children who are born paralyzed and usually develop hydrocephalus. The very best thing we can do is prevent as much of those types of diseases as possible.”
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| An advanced hydrocephalies case. |
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| Ray Ruddy, Board of Directors for Maximus Inc, Grantor at Gerard Health |
“I personally believe that Dr. Schiff’s discovery, after 20
years of research, of the bacteria that causes infectious hydrocephalus in this
region of Africa is worthy of the Nobel Prize in Medicine. However, realizing that Nobel Prizes are
generally provided for actually curing diseases, we still have a way to go”, says
Ray Ruddy, the founder of Gerard Health Foundation who has become an important funder
of Dr Schiff’s current efforts. “The Gerard
Health Foundation was founded with one objective only, and that is saving
lives. And the most lives we can save
the better.” Ray’s foundation had funded
HIV AIDS prevention in Uganda more than 25 years ago, and also been supporting
hydrocephalus operations out of one of the CURE Hospitals. He hooked up with Dr. Warf once he introduced
the ETV-CPC process as a more effective treatment of hydrocephalus. And that connection led to meeting Dr.
Schiff.
Mr. Ruddy takes an unusually hands-on approach for being a
grantor, accompanying Steve on trips to
Uganda, understanding the medical issues deeply and also helping smooth over
any political issues. And he was very
excited when he learned about the bacterium that was the source of the
infections. “Once you uncover the bacteria
that causes hydrocephalus, you're able to work with Big Pharma to try and cure
it without an operation. And in addition, you can find where it exists in the well
or in the soil. It represents a
tremendous ability to eradicate hydrocephalus off the face of the Earth. It's
wonderful!”
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| Dr.
Starlin Tindimwebwa, CURE Children's Hospital |
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| Dr. Schiff and the King of Busoga in 2004. The King is backing Dr. Schiff’s work by providing resources and office space in the Parliament building. |
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| Judith Mutabazi, a senior planner in charge of Health Policy at the National Planning Authority |
Unfortunately, with a newly discovered infection, especially
one so lethal and destructive as this one, there is still a lack of good
guidelines to tell physicians the best way to treat this (like which
antibiotics are best, how long should they be used for, etc.). “I had thought that once we answered Ben’s
question about what made these kids sick we would be done”, says Steve. “Instead,
we now face innumerable critical questions to follow: which antibiotics are
best, how long to use them, are there other medications that would be important
to add, and what would be the best way of timing surgery with antimicrobial
treatment.”
The successful outcome of this large undertaking cannot be guaranteed. But time is of the essence since similar cases of these diseases are starting to show up in the U.S.
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| This young girl was born with Spina bifida. She had surgery and then developed Hydrocephalus (water on the brain) after 4 months. The mother hasn't been to a hospital for follow up for about a year due to lack of funds and transportation, and the baby's head is large with accumulated fluid. Dr. Schiff and the team arranged for the girl and her mother to attend the CURE hospital the next day. |
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| The mother of the above girl. She has five other children at home, and she had to choose between paying school fees for the children or getting the 6th child to the hospital. |
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| The 3-month old boy in the striped shirt is named Peter. He is a typical case of neonatal sepsis. At about 3 days old he developed a fever and excessive crying, and eventually his head started swelling. He eventually went to the CURE hospital, where they first performed an ETV and then they installed a shunt when the ETV failed. |
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| Dr. Schiff addresses some of the 800 Village Health Team members that have been recruited for outreach and “being the eyes and ears in the villages”. This meeting occurred in Jinja, a part of Uganda where the incidence of deaths is abnormally high. |
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Ray Ruddy and Steve Schiff talk logistics. |
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One of the big problems of treating this recently identified
bacterium (which is the root cause of so many infections in newborns) is that
it is difficult to culture, and difficult to grow in the lab. Once those are
done, though, it can develop spores which, like Anthrax, might be fatal to the
hospital staff and others who come in contact with it. Dr. Schiff has a strong difference of opinion from the CDC
regarding the best way to handle such a potentially dangerous item. He is
advocating Anthrax-level safety measures to handle it; whereas the CDC suggests
normal level precautions for such substances until someone dies from it. Pictured is Sophia, one of the lab technicians at the ministry of health, with a state-of-the-art Bactec Blood Culture machine for the rapid on-site detection of a variety of bacterium. |
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| Medical ward in the National Hospital, Entebee. |
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This is a portable, low-energy MRI machine. It costs about $20,000 USD compared to millions of dollars for conventional MRI machines which can take up the space of an entire room. One of the tradeoffs is that the images are low resolution compared to their larger bretheren, but a person familiar with the kinds of infections being sought should have enough information to make a diagnosis. The team is experimenting with running the low-res image through an AI program to up-res the scan based on a boatload of training data. Upon hearing this, the following conversation took place: Me: "You know there's a risk of the AI hallucinating, resulting with false diagnoses that could lead to unnecessary death, right?" Dr. Schiff: "Yes, that is certainly a concern." Me: "Since you're writing your own software, why not have the AI program scan it's training set and flag any new scan that doesn't match, saying "Insufficient information to make a diagnoses. Please try a more conventional method."? That should cut the hallucinations to zero." About 10 seconds silence occurred before Dr. Schiff gave his answer: "We hadn't thought of that!" My work here is done. :-) |
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| Part of the traveling bus entourage. Carol and I are centered. |
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