Special Edition: Saving Lives in Uganda
We believe this may be Nobel-prize winning work
Editorial by Gabriella
In the picture above and below the images are captured at the Children’s ward in the National Hospital, Kampala. The story one can find below was shared by Gary Friedman who is an amazing photographer and writer/author friend of Dancing Elephants Press. Gary recently visited the hospital and made many wonderful connections while discovering a beautiful story on how to help children who suffer from hydrocephaly. Helping children is a wonderful cause that I highly resonate with. I am very grateful for the amazing doctors, nurses, and support staff who are there to help these beautiful children in the clinical setting as well as with research. I have the highest appreciation for Gary Friedman photographing and sharing this amazing story. I hope everyone will enjoy, support and widely share this work.
The original publication of this story is on Gary’s blog.
Our story begins more than 20 years ago, when Dr. Benjamin Warf, a University of Kentucky professor and a renowned authority on diseases of the brain and spinal cords of young infants, left his academic position in the U.S. to practice medicine in Uganda. His father had been a missionary there; and Ben felt his life calling was to do medical missionary work.
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.
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.
Grace Nakato, 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.
Inside a neonatal NICU. The hospital is on a shoestring budget but hope lives here.
Premature twins at the Jinja Regional Referral hospital.
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. Warf’s published papers caught the attention of Dr. Steven Schiff, then a professor of pediatric neurosurgery with a longstanding interest in epilepsy, and a professor of engineering at Penn State University.They met at a medical conference in the U.S.Dr. Warf said they had trouble with their epilepsy equipment.Dr. Schiff said, “Let me fly there and take a look”.
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?”
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.”
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?
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.”
The team at the children’s ward at Madhvani Childrens' Hospital.
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.”
An advanced Hydrocephalus case.
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.
Dr Harriet Nambuya,
Head of Pediatrics,
Jinja Regional
Referral Hospital
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!”
Dr. Starlin Tindimwebwa,
CURE Children's Hospital
The team has also been gathering support from both the national government, the regional governments, and the King of Busoga, one of the four constitutional monarchies in Uganda.“We need to work with their village leaders”, says Dr. Schiff.“And the health care workers that we've recruited are very respected in Uganda because they're there helping people. The Ministry of Health organizes this program. So we have a large infrastructure we're putting together and treatment trials at the point of care, and we're very interested in both trying to head off and prevent infections and treat them immediately when the infections arise early in life.”
Dr. Schiff and the King of Busoga in 2024. The King is backing Dr. Schiff’s work by providing resources and office space near the Parliament building.
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.
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.
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.
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.
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.
Ray Ruddy and Steve Schiff talk logistics.
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.
Pictured is Sophia, one of the lab technicians at the Jinja Regional Referral Hospital, with a state-of-the-art Bactec Blood Culture machine for the rapid on-site detection of a variety of bacterium. Dr Schiff is working closely with Sophia to ensure that they take a very high level of precautions in efforts to grow the new bacterium safely in her laboratory
Medical ward in the National Hospital, Kampala.
This is a portable, low-energy MRI machine. It costs about $500,000 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. :-)
Part of the traveling bus entourage. Carol and I are centered.
Personal Note - What Brought Me Here?
I first heard about Dr. Schiff's work from an email he sent me, congratulating me on my photographs from Vietnam back in 2018 (a country he also works in and visits frequently). We got to conversing; he described his mission and some of his successes, and he left me with the impression that he was a selfless individual trying to do as much good as he could in the world.
Then he attended one of my seminars (that's an honor, considering how little spare time he has!), and after class over dinner he told me stories of his work, the enormity of the challenges, and the small but measurable impact he's been able to make so far. After that I knew that this was a compelling story that needed to be told. So after leading the photo safari in Kenya, we headed South to Uganda for a week to bring the story home.
I'm hoping to go back again in early 2025 to follow some of the VHT members into the villages and document the impact they're having in the remotest of areas.
Until next time,
Yours Truly, Gary Friedman
This is bbbeeeaaauuutttiiifffuuulll and heartbreaking. Its good to know kindness and love is still growing in our world. Praying for all parties involved in helping to make our world a wonderful place.
It is wonderful to see the research, hard work, and support that is going into saving children's lives. I am grateful fro Gary Friedman bringing this important story to light.