Saving Lives in Uganda - Part 2

[Note: This is Part 2 of the blog post from 2024 when I had first visited Dr. Schiff and his team. GF]

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The young mother was not doing well. 

Living in a remote village in the Jinja region of Uganda, she had given birth to a baby just a few weeks before, but she was feeling weakness on her right side of her body and had fevers.  She was under the care of a traditional healer (sometimes referred to as “Shamans” or “Witch Doctors”) who had instilled cuts on her body as part of the treatment, making her condition worse.  Dr. Schiff and his team examined her and thought she most likely had a stroke as well as an infection. He immediately arranged for an ambulance to come to the remote village and get her.  Empty space in the ambulance was filled with 4 other babies from the village who were also in need of medical attention – 3 had fevers, one had a discharge around the umbilical cord which wasn’t cut close to the body, one had pustules on the skin, and one had very yellow eyes, meaning it had jaundice early in life, a condition that can lead to brain damage if it isn’t treated. 

Once they arrived at the hospital, the young mother was scheduled for a CAT scan, plus treatment for an infection and high blood pressure.  But then the traditional healer called the hospital, demanding that the young mother return home.  When we last heard, the young mother was getting ready to leave the hospital early to comply with the healer’s demands.

 Trying to Identify the Source

This was the 4^th remote village that Dr. Schiff and his medical team had visited, as part of a multi-disciplinary effort to find out why there have been so many newborn infections, which if infants survive long enough can lead to Hydrocephalus (water on the brain) requiring surgery. In addition, a preventable serious malformation of the spine called Spina Bifida seems to be occurring at very high rates in the area.  After 20 years of research, Dr. Schiff had identified a bacterium called Paenibacillus thiaminolyticus as being the root cause  of some of the most deadly of the newborn infections, and the one that most often led to hydrocephalus. Now the race is on to figure out how the bacterium is transferring to the newborns.  Is it in the water?  The soil?  Through the mother?  Traditional after-birth practices that have been used for thousands of years, and still persist despite the heightened risk of infections? 

Dr. Carmit Cohen, a veterinarian and a
microbiologist, joined the team on this trip.  

To find out, a multi-pronged master plan was devised:

1)  An army of Village Health Team (VHT) workers has been assembled to go out to the remote villages and canvas the health of the babies, filling out questionnaires on their cell phones and electronically sending the results to a central database.

2) On-site sampling of the environment including soil, water, and animal feces.

3) Creation of a Geographical Information System to understand correlations between measurable ground conditions and increases in the infection rates.

The field team.  Missing from this shot is Dr. Ericson, an infectious disease
specialist, who flew in a day later.

What Took so Long?

These plans were being talked about 10 months ago, when Part 1 of this article was written.  The strategy is certainly straightforward.  Why did it take so long to actually start executing?

“I think it went rather smoothly”, Dr. Schiff responds.  “We had to assemble a team of laboratory technicians and set up the lab.  We had to assemble an army of about 750 volunteers to form the Village Health Team, we had to create the electronic questionnaire, the database and the dashboard to help us visualize all of the data in real time.  Then we had to get permission to do all of the field work.”

Everything is being measured.

It turns out that getting the permission took the greatest amount of time, starting with the Ugandan ethics committee.  "They very carefully went through all of our proposals, asked us questions, we would respond, and revised our proposals, and finalize the proposals and consents.  The consents are also translated into local languages.  In the end, there were, I think, 31 documents that had to be approved.” 

“Once that’s done it goes to the Ugandan government oversight agency, the Ugandan National Council on Science and Technology (they’re responsible for all of the ethics committees).  It takes them awhile to review things.  Then when they approve, it all goes to the United States’ Institutional Review Board.  They have more questions.  They want other changes to be made.  So we went back and forth a few times with our ethics committee, and in the end we have to unify the protocols.  Separate consent was also needed for the electronic questionnaire and consent to sample from the homes and village that we developed.”

Who knew?  😊

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The Field Work Begins

After the interview, the mother is thanked
with a care package consisting of diapers,
crackers, sugar, and rice.

“When was the baby born?”, asked the Village Health Team volunteer.  “Was he or she healthy?  Does/Did the baby have any of these symptoms?”, and then a whole laundry list of possible problems were listed: fever, fast breathing, not feeding, convulsions, redness around the umbilical stump…

Now that the surveillance was fully approved, this was the first opportunity Dr. Schiff  had to actually witness the VHTs in the field conducting the study and examine the conditions the babies were living in.  In doing so, some problems with the way the questions were written began to surface.  Some of the names of common medications were unknown to both the mother and the VHT member.  And the experience of the young mother who had a stroke prompted changes to the survey, to ask whether the postpartum mothers are ill, or to report whether a mother has died following childbirth.  The purpose of this survey is to just gather data; there is no budget for actually arranging for medical transport or to pay for health services.  The team intends to layer onto this surveillance system strategies to substantially reduce the preventable causes of neonatal and infant mortality that they are focusing on: infections and congenital malformations such as the open spines of Spina Bifida.

While the questionnaire is mainly designed to track the health of newborns, it is always a secondary goal to use the VHT’s presence as an ambassador for hospital care and for western medicine.  But just the idea of taking a pill every day can be a foreign concept that isn’t always adhered to if prescribed, and the rural people don’t have access to supermarkets or pharmacies.  Folic acid, for example, has been proven to prevent many serious malformations during pregnancy.  VHTs recommend it, but the data so far shows that it’s not being taken.  What compounds this difficulty is that the rural people do not purchase food in commercial markets where grains fortified with folic acid might be present.   “In Uganda, folic acid is also a kind of double-edged sword” says Dr. Schiff, who points out that while it’s effective in reducing neural tube defects and birth defects of the brain and spinal cord, it can also make amplify the deadly effects of malaria.   

The walls are made of a mixture of mud and cow
dung.  Could this be a source of some of the infections?

During my visit, four villages were visited to perform sampling of the soil, water, animal feces, and to look for any other possible source of infection, such as the walls of the dwellings which are made up of a combination of mud and cow dung.   The team was joined by Dr. Carmit Cohen, a veterinarian from Israel who’s also a molecular biologist.  (“Because what do us surgeons know about cows?” Dr. Schiff jokes.) 

The villages are all completely off the grid and self-sufficient in terms of growing food and livestock.  Everyone wore western-style clothing and most had access to a cell phone; solar panels on the roofs provided a means of charging.  The children roamed carefree and seemed happy.  It was quite picturesque. 

Cultural Barriers

Looking for correlations in mountains of data at the Jinja Regional Referral Hospital.  The left side is a map where all 60,000 villages in Uganda were fused with the satellite climate map grid, and mapped onto it were the locations of 20 years' worth of postinfectious hydrocephalus cases.  The right graph suggests an increase in hydrocephalus when the rains come two weeks before birth.

Henry Masengere and Dr. Ericson
prepare the samples for
lab testing.

In addition to the environment, there are many traditions, some of them thousands of years old, that are making the problem worse.  One is the practice of placing foreign materials (sometimes including cow dung) on the open umbilical cord.  One is the use of a traditional birthing attendant, which was outlawed in 2010 due to high maternal and child mortality rates, which were attributed to poor hygiene, unhygienic conditions, and a lack of training.  (They are sometimes still being used despite the ban.)  Then of course there are the traditional healers which often make matters worse.  Add to that the lack of access to supplements to prevent malformations, and medications to treat infections, and this kind of mission becomes a real uphill battle.

The traditional healer incident described at the beginning of this story has already catalyzed some progress.  After some tense phone calls, they now have an agreement in place with the traditional healers to meet and discuss working together and avoid incidents like this in the future.

Other Images

Ready for testing

A short meeting takes place in the break room at Mulago National Hospital, where the autoclave had previously exploded.

New mothers in line to have their infants examined.  It's hard to tell if the babies
have fevers, or they're too bundled up in this 80 degree F heat.

Cow dung was tested too...

An underground spring is the source of water for this village.

This all proved to be interesting work. :-) 

Prepping the sample for a deep freeze so it can be
 safely transported to the lab in the U.S.

"The Dashboard" - a web-based interface to the database of data being collected. 
Here you can visualize locations of outbreaks, with overlays that include weather and temperature.

Ward 7 of the Jinja Regional Referral Hospital

When hospital wards are full, they put the excess on mattresses in the hallway.

Drs. Schiff and Ericson examine a premature baby with a growth at the base of her spine.  After birth she had a little difficulty breathing which is typical of premature babies because their lungs are underdeveloped.  She was born on an island on one of the lakes so they took a boat to the mainland and then went to a lower-level health center.  They were then referred to a regional hospital so they then took a motorcycle taxi to the regional hospital.  She’s now getting oxygen for her respiratory needs.  The rather large 2-inch “squishy mass” at the base of her back prompted concerns about either a type of spine defect or perhaps a type of tumor that can be hard to distinguish from a spine defect without special imaging.  So once her respiratory illness is improved, she’ll be sent to one of the hospitals that has a CT scan and a neurosurgeon to have either the defect repaired, or an associated tumor removed.  

The growth at the base of the spine.

Dr. Ericson consults with a nurse about a new premature baby.

Dr. Cohen, an Israeli, has been around the world but this was the first country to be excited about her visitation.  Christianity has a strong presence here, and people got excited because Israel is the place where all of the biblical stories they've been reading about takes place.  "I'm in recovery; can you bless my journey?"

Dr. Cohen obliged.

Epilogue

Dr. Schiff's work continues, both in Africa and Vietnam, despite some funding challenges from the NIH.  Some of that shortfall is made up by some very gracious private donors.  

As of this writing, the lab samples are in frozen storage, waiting for transport to Yale to be arranged.  It might be months before the tests results are known.  

Tests from last year have ruled out the infections happening through the mother.  

Environmental infections should be preventable, and Dr. Schiff wants to craft policy to address the sources and routes of infection that they identify. The Dashboard lets the team, and the Ugandan and Kingdom collaborators, see right away if policies are reducing the number of newborns that fall ill or not. Schiff is hoping to start the first infection prevention trials soon. Preventing the malformations will require additional studies which he hopes to begin organizing soon. 

In the end, the goal is to have a major impact on these preventable causes of infant mortality in regions of sub-Saharan Africa such as this where infant mortality rates are far too high. 

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For more shots of Jinja and its people, please have a look at the youtube video I shared with you last month - it will give you a really good feel for this trip.

I'd like to thank the donors whose generousity made my return trip possible:

Jude Montassir	Tim Griffy	Silvia Sevilla	Daniel Weingrad
Michael Dastoor	David Street	Sjors Volwater	James StCyr
Robert Younge	John Redwine	Robin John Castree	George Cates
Octavio De La Torre	Karim Najjar	Jeremy Bacon	Amit Pushkarna
Ral Sandberg	Eberle Joachim	Karl Brandt	Ian Holmes
Mark Frank	JanPaul Van Hoven	George Gilnes	M Geddes
James Kohn	David Hay	Cheryl Pelavin	Petr Petr
Randy Finch	Miyo Yamauchi	Ridley Boudreaux	Soedarmanto Harjono
James Ekstrom	Ross Thomas	DR Rawson	Neil Talbot
John Kadvany	John Robinett	Jack Stevens	Josephine MacDonagh
Ivan Van Laningham	David Cossey	Jim Spickard	Khai Vu
David Rubenstein	Klaus Gstettner	Lawrence Mallery	George Struk
Bob Locher	Chris Coleman	Mihai Dascalu
Tracey Marcyan	Wayne Richmond	Thomas Easland
Larry Salustro	Bart Rademakers	William Price

Is there any other kind? :-)