Saving Kids from Eye Cancer

(by Darrell)

Retinoblastoma is the most common intraocular tumor in children and represents 11% of all cancers in the pediatric population.¹  Thanks in large part to early presentation and advances in treatment in the United States, less than 3% of all patients with this cancer die, whereas in Africa, the mortality rate is 70%.²  

However, in Burundi in particular, it is worse: since John started the eye clinic in early 2014, he has seen between one to three children per month with this aggressive eye cancer.  He has yet to see one child survive.

There is nowhere in Burundi for these children to receive treatment (for the affluent, there are options just across the border in Rwanda), and after watching so many die despite taking heroic surgical measures, John decided in January to initiate Burundi’s first chemotherapy program for retinoblastoma.

John recruited a group of us, including Alyssa, Logan, Dr Parfait and myself, to travel to Kabgayi Hospital in Rwanda to meet and learn about the treatment of retinoblastoma from a British ophthalmologist named Dr. Keith Waddell.  When I first shook hands with Dr Keith, I had the distinct impression that I was meeting the most important person I had never before heard of.  He immediately memorized our names (and checked them twice) and then ushered us into a sitting room where he began to unfold the story of the years-long attritional war he had been waging with retinoblastoma in Uganda.  His keen eyes, unflagging energy, and ability to remain undeterred in his telling of this history despite my numerous questions were impressive, but all of that quickly paled in comparison with what we encountered afterward in the eye unit.  As we walked into the ward, many of his patients greeted him in possibly the warmest manner that I have ever witnessed—handshakes (of course), then hugs, and later even sitting in his lap and playing with him.  His patients (I actually started to type “children” there) loved him, and  one of the parents even referred to their child as “his” daughter.  There we witnessed true love between doctor and patient. 

All of these patients (with perhaps one or two exceptions), had had one eye removed by him, and sometimes he’s had to remove both eyes.  Many of them have had more than 6 cycles of chemotherapy that have, on each occasion, put them at a high risk for infection and death.  But every four weeks, they continue to come back.

Dr Keith has treated close to 500 patients with retinoblastoma, and he has documented all of their clinical courses in meticulous, working-late-into-the-night detail.  He has published some of his data^3,4, but as he puts it, he needs to find some additional time to finish it before he dies, which could happen at any time.  He is 80 years old after all.

John and I both hope to be old men like him one day (many here at Kibuye maintain that I already achieved old man status last October when I hit 40); regardless, Dr Keith is truly a remarkable person who has fully embraced his calling from God to serve the least of these.  I don’t think we could have assembled and inspired our retinoblastoma team without seeing Dr Keith and his team in action.  In fact, we now have five patients scheduled, nutritional status permitting, to begin chemotherapy on May 2^nd.

Ever since I had the privilege of spending many of my Mondays during fellowship on the Ocular Oncology service at Wills, I have wanted to be like Jerry and Carol Shields who direct it and care for retinoblastoma patients.  If I hadn’t been called to Africa, I would have wanted to pursue a career in their field.  Little did John Cropsey know that ordering chemo drugs one night back in January was going to lead to just the confirmation that I needed from God to stay the course here in Burundi.  Maybe even as long as good old Dr Keith has.

Figure 1. Some of the cancer patients of Dr. Keith

Figure 2. Dr. Keith teaching and caring for patients

Figure 3. Dr Keith in center along with his assistants plus our team.

Bibliography

1.     Wong JR, Tucker MA, Kleinerman RA, Devesa SS. Retinoblastoma incidence patterns in the US Surveillance, Epidemiology, and End Results program. JAMA Ophthalmol. 2014;132(4):478-483. doi:10.1001/jamaophthalmol.2013.8001.

2.     Kivelä T. The epidemiological challenge of the most frequent eye cancer: retinoblastoma, an issue of birth and death. Br J Ophthalmol. 2009;93(9):1129-1131. doi:10.1136/bjo.2008.150292.

3.     Waddell KM, Kagame K, Ndamira A, et al. Clinical features and survival among children with retinoblastoma in Uganda. Br J Ophthalmol. 2015;99(3):387-390. doi:10.1136/bjophthalmol-2014-305564.

4.     Waddell KM, Kagame K, Ndamira A, et al. Improving survival of retinoblastoma in Uganda. Br J Ophthalmol. 2015;99(7):937-942. doi:10.1136/bjophthalmol-2014-306206.

COTW: Blind Matthieu

By John Cropsey

A couple weeks back I received a call from a long-time missionary in Burundi, Barb Vibbert.  She told me about a man named Matthieu who was somewhere in the range of 102 - 104 years old.  He was a longtime friend of their family and they noted on a recent visit to his house that he was no longer seeing well.  He was told in the capital city, Bujumbura, that he was “too old” to undergo surgery, and so he sat for two years at home with no hope of seeing again.  Two weeks prior to the Vibbert’s visit, he had to blindly attend his wife's burial.

Matthieu's Burundian surname means “to run away” in Kirundi.  This is because he was born during the events of World War I and his mother was fleeing for her life while pregnant with Mathew as the Germans fought to maintain control of central Africa.

His amazing story continues.  Matthieu later came to hear about Jesus when the first Free Methodist missionary, Jonathan Wesley Haley, arrived in the early 1930’s.  Haley was a Canadian who began his missionary career in South Africa and slowly made his way to Burundi overland.  That was no small feat in those days.  Matthieu is credited as being the very first Burundian to come to Christ through the ministry of JW Haley in 1935, making him the oldest Burundian Free Methodist.

The Vibberts brought Matthieu to our clinic and led him through the clinic short-cut “back door” given his feeble state.

It was my pleasure to find on Matthieu's exam that he had cataracts, the leading cause of blindness in the world.  It was good news because cataracts are a reversible cause of blindness.  At the end of the exam, Matthieu's son (Butoyi) and “garde du malade” (who is no spring chicken himself) told me he was also having some difficulty seeing.  Sure enough, he also has advanced cataracts and needs surgery.

Matthieu's surgeries went great despite the “gestational age” of his cataracts.  Getting them out was like trying to deliver twin post-term behemoths!

As Matthieu was being assisted out of the operating theatre with the help of his son and my janitor, Aristide, Aristide stated, "Matthieu is my grandfather."  I attempt to clarify if he meant “grandfather” in the general African sense, like, he’s an old man from my village, or literally, his genetic grandfather.  “Yes, my real grandfather.”  If that’s the case, then the slightly less blind son of Matthieu must therefore be an uncle or something, so I asked Aristide.  “Yes, that is my father,” was his matter-of-fact response.

At that point it was pretty cool to think I had three generations of Matthieu’s family standing in front of me in the theatre, but then it quickly hit me that one of my staff, who has worked for me for over a year, has let his grandfather sit at home in blindness (and now his father as well) without bringing them in for an examination.  Okay, okay, the other option is that Aristide may not be overly confident in my skills yet and was going to wait another year or two before risking his relatives under the knife:)  Either way, it is just another reminder of all the barriers there are to delivering care in a place that has never had access before, even for families with means and connections like Matthieu.   Imagine what prevents the poorest from making it to us.

A happy Matthieu with his son and two grandsons a day after his second cataract surgery

Maban Cataract Camp, South Sudan

By John Cropsey

These past 6 days, I have witnessed pure beauty.  The closest thing I can compare it to is the feeding of the 5,000, except we were given an impossible sea of blind people to treat.  The eye team of Kenyans (from Tenwek Hospital), Burundians (from Kibuye Hospital) and South Sudanese (Samaritan's Purse) cared for over 1,500 patients in Maban, Upper Nile State, South Sudan, and performed 512 cataract surgeries on some of the world’s most difficult cataracts (lots of band keratopathy and pseudo-exfoliation with zonular instability and tiny pupils - I call it Sudanese eye).  This region has no access to eye care.  The nearest ophthalmologist in Juba is a three-week journey by 4x4.  Thankfully we could be flown in by MAF (Missionary Aviation Fellowship).

  

Maban is currently home to a massive refugee population fleeing active conflicts in South Sudan and Sudan just to the north.  The majority of the surgeries were for patients who were blind in both eyes and teetering on death’s doorstep.  Imagine being a blind refugee in a place where food and water are scarce, violence is endemic and the plagues of the earth freely reek havoc in congested, makeshift camps (HIV, TB, leprosy, dysentery, trachoma.…) with over 100,000 refugees struggling to survive in a land not their own.  In fact, several blind patients sustained significant injuries just trying to get to us.

Caring for that many patients in such a short period takes a coordinated, team effort which was spearheaded by Samaritan’s Purse and the Maban County Hospital.  The UNHCR (United Nations High Council for Refugees) provided three commercial buses for transporting patients by the 100’s each day from four large refugee camps and the "host" community.  MSF (Médecins Sans Frontières/Doctors Without Borders), the Red Cross and others also helped publicize and aid patients to the camp.

Here is how each day would start.  Examine the 80 - 90 post-op patients from the day before.  Organize the queue of 80-90 patients to be operated on that day who had already been previously screened.  Begin the surgeries while other clinicians would screen 200 - 300 new patients being bussed in by the UNHCR each day.  Here's a video of what that looks like.

Here are just a few of their moving stories:

This mother brought her three children to us, all bilaterally blind from cataracts (note the white pupils in the close-ups below).  Can you imagine being in her shoes fleeing a war zone and with all your children having gone blind with no hope of getting them care?

Eldest daughter

Middle Daughter

Youngest son

David Sawe, Kenyan cataract surgeon extraordinaire, performed heroic bilateral surgery on all three kids in succession.  

The kids getting pre-op anesthetic injections followed by the "Super Pinkies" to compress the orbit and eye prior to surgery.

The eldest went first.  All three had successful bilateral surgery.

Below is a mamma who fell and presumably fractured her hip on the way to see us.  She wanted eye surgery so bad her son brought her to the camp in a wheelbarrow and straight into the operating theatre.  She refused to be taken for x-ray or have her hip examined.  She desperately wanted to see again and wasn't going to let her hip stop her.

Getting escorted to the front of the line in theatre in a wheelbarrow.

Post-op and SO HAPPY.  She only has one tooth so its hard to see the smile:)

On our last day there, I had the chance to watch 81 post-ops get up and walk home simultaneously.  I'll be honest.  It put a tear in my eye.  As I strolled back to the SP compound for the last time, I saw this post-op granny who had been totally blind briskly making her way home through the village.

  

We praise God for all He enabled us to accomplish on behalf of the blind of S. Sudan on this trip.  I am also incredibly proud of this 100% African team (ok, I am a partial exception but my role was very small), in particular, its talented Kenyan leaders, David Sawe, Jarred and Brenda.   TIA (This is Africa) today folks, Africans caring for Africans.       

Congo Eye Surgical Safari - Trip II

by John Cropsey

In January 2014, the Department of Ophthalmology at Hope Africa University’s Kibuye Hospital opened its doors with the stated mission of ERADICATING PREVENTABLE BLINDNESS IN THE GREAT LAKES REGION OF CENTRAL AFRICA.  What can I say, I like to dream big.  We started with one crazy ophthalmologist, five untrained staff, an old paper eye chart and a big vision.  Today, we have a capable staff running a pretty well-oiled clinic and specialized surgical theatre. 

The Kibuye Eye team posing for a fun photo with an old box of glasses

First Retina Surgery in Burundi          First Corneal Transplant at Kibuye
Most importantly, we are training the future of African healthcare professionals with over 100 medical and optometry students having completed rotations with us already.  We have also just joined forces with a brand new ophthalmology residency program in Rwanda and together we plan to train the future eye surgeons and physicians of the Great Lakes.  It’s a great start to what we hope to build into the major referral eye hospital for the region.

But our vision extends beyond that.  Burundi (10 million plus) sits on top of Lake Tanganyika with Tanzania and Democratic Republic of Congo stretching along either side and Zambia 500 km away sitting to the south.  Twelve million people live on the edges of the lake with virtually no access to eye care.  There is good reason for this.  This basin is geographically isolated, sitting in the heart of Africa with the impenetrable Congolese rainforest to the west and steep mountains rising out of the lake to the east leading to the vast East African plains of Tanzania.  The region has been plagued by decades of war and instability making it one of the poorest, least developed places on earth, yet it remains one of the most densely populated areas of Africa.  In other words, a virtual gold mine for any eager ophthalmologist willing to work around a few “road blocks”.

Our vision is to divide this population of roughly 20 million (Burundi + Tanganyika basin) into groups of 1 million and begin building primary eye care infrastructure (blue dots around the lake) with a floating referral eye hospital that can service the primary eye clinics around the entire lake.  Today, I want to share with you how we are embarking on this voyage with our pilot program at Nundu in Fizi, South Kivu, DRC.

The "Master Plan" for the Tanganyika Basin

We first visited Nundu Free Methodist Hospital in Fizi in February 2015 at the invitation of missionaries working there.  Fizi is home to 400,000+ people.  During that visit, we asked the hospital to identify a healthcare professional to come train with us at Kibuye in order for them to have the knowledge base to begin providing very basic eye care and compiling surgical cases at Nundu.  Dr. Songolo was selected and joined us for one month at Kibuye.  He happened to arrive just as Burundi descended into political chaos in late spring, but he stuck it out and finished his month of training.

Between June and September he compiled a list of nearly 100 patients requiring sight-restoring surgery at Nundu.  So this October we decided to pay him a visit.  What does that entail?  

Step 1, getting visas for the eye team.  Since rules change constantly and there are many layers of bureaucracy this required trips to get passport photos, vehicle documents and immigration papers in the capitol 2.5 hours away.  We received our visas just days before departure.  

Step 2, packing everything you will need to to do eye surgery in a setting with no electricity and minimal running water.  And note, this has to fit into or on top of the eye clinic’s 1986 Landcruiser, affectionately named “Umutama Kazi”, i.e. the “Old Lady”.  This includes generators, surgical microscopes, surgical supplies, exam equipment, meds etc…

Step 3, decide if security is good enough to carry out the mission.  This requires gathering intel from folks on the ground and from news sources.  BBC was reporting an ambush of a military envoy delivering civil servants’ pay near a town we would be passing through.  Eleven soldiers were killed and 20K stolen.  Concerning.  My Congolese contacts on the ground assured me this was to the north of the town.  Security was “good” passing to the south where we needed to go.  Hmm.  Tough call.

Step 4 getting to and successfully crossing the border.  This is VERY stressful.  The Congolese border guards were particularly “thirsty” this day and worked us over trying to leverage extortions of one kind or another.  Thankfully, the medical director from Nundu arrived as the “Old Lady” was about to be opened-up for full inspection.  He had a word with the boss man who happened to have presbyopia.  After an impromptu eye consult and a pair of reading glasses dispensed, we were on our way relatively unscathed.  

Step 5, traversing the main “highway” of Eastern Congo linking north to south.  This is a dirt road requiring one to ford at least three rivers where bridges have been washed out and to drive over several other bridges that look like they could be the next to go.  The road weasels its way sandwiched between the water and the mountains sitting on the lake’s edge.  From the border to Nundu it is about a three hour bone-rattling journey.  There are road blocks along the way where one must negotiate and pay not inexpensive “tolls” for the use of their fine road.

We thanked God when we arrived safely.  The previously mentioned missionaries were not at Nundu this time around, so we were hosted by the nationals.  I slept in a tent on top of the Old Lady while the staff were given rooms in nearby homes.  We were well fed by our hosts, but the diet is quite different than the Burundians'.  Most of the team found it difficult with the daily fofo working to block the colon while some form of ensuing dysentery fought hard to overcome the fofo beazor.  It really puts the bowels into a difficult paradoxical position, constipation with diarrhea.  Is that possible?  The bad news, there was no running water or privacy.   I found myself wanting to go to the pit latrine nearest me, but I could not gather the courage to sit down as there were roaches of unnatural size emerging in large numbers from the crumbling concrete “toilet” and I feared some cess-pool dwelling creature would lay its fangs into my back-side if I got too close.  Thus, my best option was using the toilet (with no seat or running water) in the Congolese house down the hill where I also took my bucket baths at night.  The bathroom door was constructed of a see-through sheet hanging in the breeze-way between you and the living room where tout le monde (everyone) was listening to the muzungu no doubt work out his issues.  The silhouette as I was taking a quick bucket bath at night by flashlight had to be equally frightful.  But, I digress.

We got right to work the next day and by the end of the week we were able to preform 63 sight restoring surgeries and carry out screening clinics at Nundu and two other locations.  We also met with local officials and other NGOs about bringing eye care services to Fizi going forward.  There is currently no eye care of any kind, even in the territorial capital of Baraka.  While in Baraka, I visited the MSF (Doctors Without Borders) hospital to discuss the situation there.  Baraka felt like a town in the wild, wild west, only in Africa.  Ironically, between Nundu and Baraka we drove through a UN refugee camp with over 10,000 Burundians living in make-shift dwellings on the side of the mountains.  It brought home the fact that Burundi’s problems are no joke either.  I can’t imagine how much fear one must feel to make the choice to flee to Eastern Congo of all places.   

 Morning post-op checks

Happy post-op mamas who are no longer blind!

This man and his wife waited all week so we could do his other eye if we had time at the end.

As part of our team, we flew in a special friend from Tenwek Eye Unit (Kenya), Richard Tonui, to help train our team how to carry out surgical safaris in some of the world’s most challenging environments.  Richard has over 25 years of eye care experience going to tough places in Africa.  We also had two Congolese students with us, a medical student and an optometry student, both of whom did an amazing job helping us navigate local logistics and care for lots of patients.  One of the students has agreed to help found our first eye clinic in Fizi when the time comes.  He happens to be the brightest one to come through Kibuye to date.  

Richard Tonui from Tenwek Hospital

Saying goodbyes to Nundu with a shout out to First Pres in Chattanooga, TN, for the fantastic eye clinic hats

Saying goodbye to Naomi, the daughter of the medical director

So, the future is exciting even though we are still just a drop in the bucket when it comes to the needs of this region, but Jesus loves to start with an act of faith as small as a mustard seed and see it grow.  We pray this small seedling that we are trying to nurture in Fizi will grow-up and begin multiplying other clinics up and down Lake Tanganyika.  

Case(s) of the Week: Corneal Transplants

The cornea is the clear "windshield" of the eye.  If anything causes it to opacify (as in photo #1) or become warped, vision is lost and the patient is rendered blind.

Photo #1:  Severe Limbal Vernal Conjunctivitis with corneal overgrowth in a teenager

In Africa, many lose their vision from corneal diseases such as trachoma (chlamydia of the eyes transmitted by flies (#2a & #2b)), ulcers (#3) and keratoconus (warpage/bulging of the cornea (#4)). 

Photo 2a:  Masaai woman with trachoma

Photo 2b:  Above woman with trachomatous corneal scarring, right > left;

also with cataracts in both eyes causing "white pupils"

Photo #3:  Boy with severe allergies (giant papillary conjunctivitis) causing "shield" ulcer

Photo #4:  Teenager with keratoconus (notice the cone shape of his corneas)

These blinding diseases often cause permanent damage, requiring corneal transplantation to recover sight.  Transplanting the entire front of someone's eye is no small task.  Here is the story of how God enabled us to undertake such a project at Tenwek.

During residency, Dr. Sadeer Hannush (corneal specialist at Wills Eye Hospital) was a mentor to me, and we discussed the possibility of some day setting up a transplantation program in Africa.  So it was with much excitement in March 2010 that Sadeer stepped off the airplane in Nairobi with his teenage daughter Monica and a large ice cooler.  Inside the cooler were 30 corneas given by American organ/tissue donors and the Lions Eye Bank of Delaware Valley.  Bringing human tissue on an airplane across several international borders was NOT an easy task!

Dr. Hannush, Cropseys and Monica in our home at Tenwek

In order to establish a permanent transplant program at Tenwek, Dr. Hannush was able to persuade several companies (Lions Eye Bank of Delaware Valley, Moria, Alcon, AMO, Wills Eye Hospital and BioTissue) to donate over $200,000 worth of tissue, surgical supplies and instruments.

Dr. Hannush presenting the eye staff with a new Goldmann Tonometer donated by Wills Eye Hospital for checking intra-ocular pressures

Dr. Hannush performed 22 corneal transplants in four days while at Tenwek.  These are likely to have been the first transplants of any kind done in Western Kenya or at Tenwek.

   Dr. Hannush doing a corneal transplant at Tenwek with Dr. Roberts assisting

Since that week, we have received many shipments of corneas from Delaware Valley as well as the Alabama Eye Bank.  Can you believe that a box of fresh corneas can be sent via Fed Ex from the U.S.A. to Tenwek in 4 days?!  Over the last year and a half, Dr. Roberts and I have performed over 50 corneal transplants.  The eye unit is now receiving referrals from all over Kenya.  We even received an e-mail inquiry for a boy in Cameroon, West Africa, through a crazy connection with Dr. Hannush's church in Pennsylvania.  Dr. Ben Roberts just performed the boy's transplant surgery last month at Tenwek.

A corneal transplant in Nairobi costs thousands of dollars, and the waiting lists can be over 6 years.  Due to the generosity of U.S. eye banks and other donors, we've never had to turn anyone away for lack of money, and we've been able to keep our waiting list under 6 months.

There are many stories to share from this program.  One that really struck me was the story of Silas.  Silas is a university-educated teacher in his early thirties with keratoconus.  As his disease progressed in both eyes, he found himself unable to teach.  He saw the best eye care providers in Kenya, but was left blind because he was unable to afford transplantation.  He told me that he had nearly lost all hope for life and God.  Dr. Hannush was able to transplant his right cornea in March 2010.  He recovered 20/20 vision as his eye healed!  He told me God had given him back his life.  He was so excited to be able to see again and to teach his students.  Just before I left Kenya, he became one of only two patients at Tenwek to have his second eye transplanted.  See both patients pictures below.   

Silas, one week after his first transplant (left eye).  

Note: Africans often do not smile for “formal” pictures.  He really is happy -- trust me!

 Silas, the day after his second transplant (right eye) just before we left Kenya.

Kiptum (a teenager with keratoconus), one day after transplantation #2.  He was my only other patient to have both corneas transplanted before we left Kenya.

In conclusion, we are very thankful for the more than 70 patients who have received their sight back through this transplant program.  We pray that many more will continue to be blessed in body and soul over the coming years at Tenwek.

*All patient photos and stories used with permission*