Rwanda Health Journal

Freedom From and Freedom To

2011-03-28T01:10:00.007+02:00

Regarding the Middle East crises that are occurring, I wanted to write a blurb on freedom. Something I've been reading and thinking about quite a bit lately, because I think we forget that freedom isn't one entity at one time with the swipe of one movement one day. You don't just win it like a lottery prize. Its a process. And at minimum it has two essential phases: freedom from and freedom to.

It is only a first step to be free from slavery, imprisonment and oppression. It is another step altogether to have a vision, en masse, of what kinds of rules you want to agree to obey, after freedom from. Choosing to have freedom to write however you want, move and pray however you want, believe whatever you want, vote however you want, and also have rules w/ enforcement to educate all, take care of the health of all (at some level), build the roads for all is a vision a leader, or group of leaders, has to propose and dream up essentially. A people need to manifest this vision together with a common purpose in mind. It takes immense will and determination for people who have been oppressed for generations to have this kind of faith, optimism, and collective charismatic agreement to make new wise rules for the benefit of all and have the infrastructure and finances to secure that these rules be enforced.

Seems like an impossible task.

Why can't anyone look at how long it took us, the United States, to pull ourselves together with a vision? The American revolution started in 1763. George Washington didn't take office as president of the United Statues until 1789. That's 25 years of of not having it together.

In short, we may be able to help Libya be free from Gaddafi by brute force. For better or for worse. For richer or for poorer. We also know it won't solve the more long term needs of what people want to agree upon as a set of rules.

We can't bomb that into anyone.

My last two home visits

2007-04-19T12:27:00.000+02:00

So these were my last two home visits for the year.

We did two of them - me, Dorothee and a visitor from the U.S. Sad but true. I don't even really feel like telling you the stories. The abandoned and recently battered wife with 5 children - who also does not know how to read, with no land to grow food for her kids, of course she is going to have kids who fall into severe malnutrition; this is not a country that can afford social services; the mother and father who have no land to grow any food on. But the kids are, as always, beautiful. And there is absolutely no where I feel more at home than on home visits. Like, I know my favorite safe space. At least one of them. That provides great meaning for me. Fortunately, I was able to make my last home visit an even more constructive one, by taking one of our visitors from the U.S. around too. I always hope that these visits make a positive impact on others as to the reality of the majority world. And I hope it doesn't discourage either, as my battle horse cry is always...there is hope for the poor. We can change severe degrees of poverty with efforts from many angles. But we have to start pitching in.

Homeward Bound

2007-04-19T12:05:00.000+02:00

I cannot believe it everyone, but I am soon homeward bound. The end of an incredible year. I don't even know where to begin, or how to some it up. I will have to think about.

The toughest job you'll ever love?

God's country?

These are the front lines my friends, these are the front lines we should be investing in.

These children who die are the casualties of an unspoken war. More nebulous and complex in many ways then the one we are creating in Iraq.

Living on the brink of life and death and cruelty and generosity. I will have to mull over it - for final words.

I will look forward to daily hot showers and hard water pressure. Living in a place where I can drink out of the tap, flushing toilets and all the amenities that come with a modern metroplis - of fresh cut flowers, of cafe latte's and goat cheese salads. But I will miss the meaning. The depth. In truth - the trenches and the heart.

But I will stay involved. I just don't know how yet.

Attached are some pics of my last days getting Claudine's littlest brother into a home. That is a heart breaking story all into itself. I will tell it later this week.

A Wheelbarrow Race in Kili

2007-03-08T17:21:00.000+02:00

The first night we stayed in Tanzania we were in the mountains of Kilimanjaro, up a ways in a far away village about an hour and half from Moshi. These were some children near where we were staying that we played with. I think this was the first time anyone showed them how to run a wheelbarrow race. You can see who won!

Snows of Kilimanjaro

2007-03-08T16:53:00.000+02:00

We made it!!! 20 km total and uphill the whole first half. But it was beautiful and well worth the journey. I was the only one who power walked it, everyone else valiantly ran and some did quite well placing in the top 135 of ~550 runners. The winner of the full marathon was a Tanzanian who ran it in about 2h18min. The snows of Kilimanjaro were there indeed but thinning according to a local friend of a friend who summits regularly as a tour guide. According to Inconvenient Truths, there will be no snows of Kilimanjaro in ~10 years. Despite thinning snows, the mountain was a true jewel. We did plenty of celebrating afterwards as can be witnessed by our Kilimanjaro beers.

Tuyishime now...and two brothers with Rickets

2007-03-08T16:20:00.000+02:00

Christian's ready for Kilimanjaro Saturday.

2007-02-27T13:56:00.000+02:00

Une Famille from Tuesday's home visits

2007-02-27T13:00:00.000+02:00

This was a 2 week follow up visit for this little baby who was originally admitted to the malnutrition ward at 3.5kg/4 months old. That's about the weight of a newborn in the U.S. As I see so often, this mom says she is not producing any breast milk, and 'till this day I think that so many moms I meet in the malnutrition ward aren't producing breast milk because they too are malnourished. They may have weight on them from a diet heavy in starches but I don't think they're getting a enough fluids or nutrients. The boy and girl shown below are the older brother and sister and upon my asking the mom how many children had she given birth to all together, she said 6, but 3 have died along the way from various illnesses. The mom is 31. This is typical of the kinds of familes I see.

This family's bathroom

2007-02-27T12:30:00.000+02:00

...and kitchen

2007-02-27T12:18:00.000+02:00

Distraction from today's chores

2007-02-27T12:04:00.000+02:00

Peeling potatoes at home

2007-02-27T11:53:00.000+02:00

Dead On Arrival

2007-02-27T10:53:00.000+02:00

He was not dead on arrival. He was gasping for breath, like a child does with severe respiratory distress. It was not more labored than any other child who comes in with severe pneumonia or respiratory distress. And I've seen some really bad cases in the past year here - much worse than he was. He was a transfer from Kirehe, our other district hospital and my first step was to send for oxygen. Oxygen is not readily available in this hospital, it is not available on every ward, so one of the staff went to go find some in another ward. As I am accustomed now to the fact that nurses run to other wards to fetch oxygen, I went quickly to buy the father some basics and start getting him settled: a basin, some soap, a towel to wash up the child - things nurses do not provide here, nor does our hospital. I have tried to instill this practice here, but as it is nothing that any public hospital does in Rwanda, and probably East Africa for that matter, going to buy a patient a basin and soap down the hospital driveway is above and beyond a hospital staff’s call of duty. Some supposed international health experts call the organization I work for gold-plated for things like this: like walking on your own to a store and pulling out your own 2 dollars to buy a needed commodity for a patient. They tell us we cannot expect international aid organizations to hold this standard of care for patients and be scaleable and replicable. Creating dignity is, so I’m told, not scaleable.

So after my running back to the ward about 3-5 minutes later, the child is still upset, nurses are still pulling oxygen equipment together (this part of oxygen administration drives me crazy here, that it takes 20 minutes to get oxygen gauges attached to tanks, attached to tubing, wrench found, then used, to be able to turn the tank on - I still do not understand why there is no sense of gravity of getting equipment prepped in advance - before the patients start decompensating - no one takes ownership for this - even those who are told it's their job), I take off his pants to clean him. I would say he smells horribly of soiled underclothes, but three year olds do not wear underclothes here. Underclothes are a luxury too amongst the rural poor of Rwanda. My little friend is about 3; he is thin but not marasmic. I pull off his pants to clean him myself because cleaning a child are basics to U.S. nurses, but here, nurses do not bathe or wash patients, the family does, so again I hope to set a different example, I wash the child myself. Then I hear from the 4th year Harvard medical student who is with me, “He’s not breathing.” I am incredulous, it’s been maybe 30 seconds since he was sitting up, visibly agitated in his dad's arms and eyes open. I put my fingers in front of his nostrils, his mouth, to feel his breath, he is laying back, I don’t feel anything. Then his eyes roll back. I listen to his chest with my stethoscope. Not a heart beat to be heard. “We gotta’ run a code,” I say. I grab the ambu bag and place it on his mouth and start squeezing, the medical student starts doing chest compressions, but the kid is dead. I am unfortunately all too familiar with the look now. Air is not going down by my squeezing the ambu bag. His cheeks are filling up with air like a chipmunk – air is not reaching into his chest or belly. Something is lodged in his throat or deep in his lungs. Mucus plug? We have no suction. We have no way to intubate. And within a matter of maybe 20 minutes of coming to us from the ambulance, he was dead. Not quite dead on arrival, but almost.

I don’t know what to do in cases like this. I have no idea what he had. He had intense crackles throughout both lung fields. Pneumonia? A bacterial bronchitis? The father said symptoms of cough started Tuesday. It’s Saturday. What kills a kid between Tuesday and Saturday? I think about our oxygen again. When are we ever going to get it operating better here? When is there going to be oxygen for all beds, all kids, all patients, whether they need it or not. Oxygen for all. Is that a civil right? It should be. All over the world. That should be free, like clean running water should be free. But not to this child. Today was another day in the day in the life of working as a nurse practitioner here.

There are days I wouldn’t rather be anywhere else because the joy of these children is like no other, when they are well. And there are days when I cannot believe 3 year olds die partly because of no oxygen, partly because of a lack of basic emergency medical equipment and know-how, that would have been provided in, literally, a matter of heart beats at MGH. According to WHO, Rwandan child mortality for the lowest wealth quintile is 246 per 1,000 live births. Belgium is 4 per 1000 live births. ~50% of children in Rwanda rural areas are stunted in terms of growth for their age. And only about 20% of births in rural areas are attended by any skilled health personnel including traditional birth attendants. What are we going to do here? To me there is hope. There is definitely hope. Children get better with trained staff and medicine. So do moms and dads. But we have to start investing in these communities. To me, I feel like this is the war we should be fighting. Why aren’t we investing in the war and defense of these front lines?

I'm doing a Kilimanjaro 1/2 marathon this Saturday

2007-02-25T21:04:00.000+02:00

So about 10 of us from PIH are heading to Kilimanjaro on Friday to go do a half marathon. I here it is all up hill. Hmmmm. I've already declared to everyone I'm walking it and running if and when I get bored from the walking. Sort of like, I like a little espresso with my milk. I don't know if I've ever walked 13 miles in a matter of hours. Maybe hiking and camping. And I haven't really been training except for my morning walk/jogs of about 25-30 minutes. I'll keep you posted.

PS Sort of spooky right now, there are guys outside all chanting. I've never heard that before. It's past 9pm. All dark outside. I have no idea what a large group of men would be chanting about at this time of night. Hopefully it's about a soccer game or something. But sounds more militaristic to be honest. Maybe it's the soldiers that live up the hill near here? Maybe I'll have someone walk me home tonight.

PSS I have a rat problem. This rat has been coming into my room everynight and I can't get rid of him. Most of my impetus to put my mosquito net down now and make sure it's tucked in well, is so that the rat doesn't crawl onto me at night. Every night now, I stuff clothes in the bottom of the door where he's getting in, 'cause I saw that that was his entry way the other day. The audacity. He is definately a rat. Grey, ugly, his body alone is 1/2 the size of a 250mL water bottle. Hairless long tail and all. So the question is, he got into one of my drawers and seems to like nesting there... and the most devastating discovery of all was that he got into my one and only stash of chocolate bars I brought from the states. Apparently he has similar tastes as me: Cadburry Fruit & Nut. Chocolate is hard to come by here. At least the kind I like, and that was my special private reserve for the rest my stay here. So he nibbled into ALL the bars, but only on one corner. Like he want straight down the stack. Like a piece of corn on the cob.

I was going to just chop off the part he ate... to salvage my one big food treat here, but now I've decided that's kinda' gross and I'm just going to give the rat it's winnings on this one.

From Kwashiorkor in 2006 to Rickets 2007

2007-02-08T19:50:00.000+02:00

This little child came to us last summer with Kwashiorkor. He was 3yo8months in this photo which was near his discharge. Unfortunately, today I saw him again for the first time since last year and now he has rickets (lack of vitamin D and calcium) along with his older brother who has had it for many years. He's 4 1/2 years old now. Unlike last summer, one of his legs is deformed now causing him to not be able to walk well. He wasn't able to step forward with his right foot today. Or at least not without my help. Sad thing is, he was fine

summer of 2006. Ughh.

I'm back in Rwanda

2007-02-08T19:17:00.000+02:00

So I’m back, spent some time back in the states and now have arrived back. Safe and sound. -1 piece of luggage that had all of the watches MGH’s Chief of Nursing gave me. Plus 2 new headphones to use for Skype, ½ of my clothes, and a bunch of other gifts for staff. I’m keeping my fingers crossed though that it is found. I’m worried though.

I have to say I was a bit nervous to return. Nervous that I wouldn’t get right back into the swing of things, but post day 3, life here is oddly familiar. My room, the landscape. Everyone around. I was surprised to feel at home. The welcome backs and hugs I have to say are great. And the ultimate compliment today was the “Lucy!” called out to me by one of the kids from the neighborhood. “Lucy! Lucy!” I heard from her, she just was so excited. And then another couple people called out my name whom I didn’t recognize, but it felt so good. I was remembered. And most importantly Tuyishime gave me a huge hug…which in truth is why I love being here…those hugs from the kids, it is the priceless bonus of this job.

So that brings me to the chemotherapy of Tuyishime. She is still here post-operatively now receiving a second round of chemotherapy. I gave her chemo today. Dactinomycin, Vincristine, and Cyclophosphamide. I’d like to say that another nurse was responsible for the whole thing and everything went flawlessly, but it was more difficult than that. Frustration level 10 on a 0-10. I left a nurse (one I really like and who is 100% competent) to find a vein. I left her side because I was helping another boy with rickets outside, and now his little 4 year old brother who came into our malnutrition ward last year has rickets too. His father wanted help. They were at our ward door wanting help so I told him to just let me get things started inside with Tuyishime and that I’d be right out. I got their x-rays, thorough histories, the rickets started in the 4.5 year old 6 months ago, I gave them the Vit.D and Calcium Dr. Sara had given me to give to them. Explained what the meds (vitamins) were. That this is caused because of malnutrition. I asked how many times the kids had milk or dairy. Once a week? I asked (trying to stretch it to something I thought wouldn’t embarrass him.) And he said, “Probably once a month” “Ok, we’ll get you some milk powder.” Gotta’ put that on my to-do list. I then got side-tracked on email, and by this time, it’s 2 hours later, the chief nurse came to tell me they still hadn’t found a vein. “You’ve been trying for the past 2 hours without stoppying?” “Yes,” was the answer. At which point I said, let’s take a break. But I was furious inside. 2 hours of a nurse trying to find a vein. To no avail. It’s very hard for me not to let my blood boil at these points. How in the world could you stick a poor kid for 2 hours straight. I went to the ward again, told the sweet nurse who was still stabbing away to stop. That we’d try again after lunch. Then we’d get the anesthesiologist to help us sedate her after lunch time (after Dr. Sara was very disappointed the job wasn't done yet - I always feel useless explaining the circumstances). And well, of course Tuyishime herself was a crying mess.

Later once again, when the anesthesiologist tried to give her an IM shot in the rear, she was once again crying, flailing, nurses trying to hold her down to give her pain medicine and diazepam. Eventually, three men picked her up and man-handled her basically to get her on her back so the shot could be given in her rear. And you know what the patients and staff were doing at this scene? Laughing. Yes laughing.

People here, Rwandan staff and Rwandan parents, laugh at this kind of thing. It is a cultural aspect of being here that until this day, I do not understand. Why would you laugh at a suffering child? I just don’t get it. I ask if they’d laugh at their own child in pain? And they say no, but then again, I think they very well may. Pain here is not something you suffer, it’s something you watch in humor, it's something you tolerate. If not, people laugh at you. I have not made any headway on this front. It is so disappointing.

To make a long story short, the morphine and diazepam didn’t stop her resisting from getting an IV. I ended up giving her 25mg Ketamine (a very strong sedation drug) which is about half to a third of what a child her weight needed, but with the Diazepam and Morphine on board, I didn’t want to overload her. That still didn’t put her to sleep. We still had to hold down her arm so she wouldn’t resist. Poor kid. Anyway, it’s post work hours now, probably about 6pm because it’s getting dark. I’ll go in there and make sure fluids are running still. Make sure documentation looks OK. 99% chance says no one has charted anything since I left. I don't know what to do about it anymore.

I have to say though, it’s frustrating to return to the nurses giving care in a way that I think is sub-optimal. I just don’t feel like they care. My battle horse cry with injections before I left was “3 strikes and your out” meaning, you can’t poke a kid any more than that without going to get another person to try. And if that second person fails. Stop. Let’s figure out another way. One of the nurses said to me today, “Here, you try until midnight if you have to.” Responding in a sentimental and empathic way to the patient’s reaction is not a part of it. At least it doesn’t seem to be to me.

Probably, the toughest part of working on the in-patient ward for me is the seeming emotional disconnect of nurses when a patient is suffering, what I would call lack of “nursing” a patient through pain and tears. When I don’t see nurses doing that…what I would call “their job” which is to be there emotionally on top of the medication administration, when I don’t see that at all…when I see worst of all, laughter (which to me is even worse than apathy) that is the toughest, most frustrating part of this job for me.

And that aspect of care doesn’t make me feel at home at all. Or like I’m making any difference in nursing care. In fact it makes me want to go into the teaching side of things, not the clinical practice of things, not work in the pediatric ward anymore, because I’d like to somehow figure out how to get nurses to care about needless suffering and do something about it, and I haven’t succeeded on this front at all. Clearly, as I saw today, they still laugh.

PS Just found out they found my luggage! Yeah! Watches for all nurses in Rwinkwavu here we come!

More soccer kids and moi!

2007-02-08T19:11:00.000+02:00

Janvier before PIH came; Janvier after/ with us at the Cameroon/Rwanda game

2007-02-08T19:07:00.000+02:00

Had to post this one again; one of my faves - hopefully I can go and visit her at home now that I'm back

2007-02-08T18:22:00.000+02:00

Me and one of our malnourished kids post hospitalization at his house for a home visit; he wanted to braid my hair.

2007-02-08T18:17:00.000+02:00

More shrinkage on Tuyishime's tumor; she's getting surgery on Tuesday.

2006-11-30T17:24:00.000+02:00

Last weekend Claudine and I went to the orphanage where her brother and sister are. We are currently trying to get them into her same boarding school.

2006-11-30T17:19:00.000+02:00

Last Thursday I went to Kirehe to teach the community health workers about malnutrition and family planning. This was my class.

2006-11-30T17:16:00.000+02:00

Our new stock building just got it's first delivery yesterday. The World Food Program food for our HIV patients was the first shipment to arrive.

2006-11-30T17:11:00.000+02:00

Some of my favorite kids!

2006-11-30T17:05:00.000+02:00

2 of my friends from Ellison 18 at MGH came to visit me (both are nurses). WHAT A GREAT TIME WE HAD! Thank you Kou-Jolie and Becca!

2006-11-21T18:36:00.000+02:00

This Little Girl's Feet Were Edematous from Kwashiorkor, and Skin Ulcerated, She Came to Us In Malnutrition With This

2006-11-21T18:30:00.000+02:00

This is the house I bought for him; I went to check out the new additions; the whole family was doing great including the baby.

2006-11-21T18:22:00.000+02:00

This Little Girl Died this September; Just Found Out From Lab It Was MDR-TB

2006-11-21T17:45:00.000+02:00

Nurses from the Pediatric Ward

2006-11-21T17:37:00.000+02:00

A Case of Steven's Johnsons, Perhaps TENS

2006-11-21T17:33:00.000+02:00

Tushiyime's Tumor Shrinks

2006-11-21T17:18:00.000+02:00

One blurb

2006-11-10T19:31:00.000+02:00

The rain has started. It rains everyday now. Thank God. I thought my garden would not make it, but with this kind of consistent rain everyday, I have new hope. The vegetable garden I started as a community cooperative garden to work hand in hand with the malnutrition program here, and yet also be an income generation community cooperative, I think will have a chance to survive afterall.

Chemo Day

2006-11-10T19:25:00.000+02:00

10/04/06 Chemo day. I am as we speak in a meeting with the hospital medical director, the chief nurse of the hospital, the chief nurse of pediatrics, Sara – the PIH pediatrician, and myself, I am in an ethical dilemma in my head – as they all sit here discussing whether or not we should do chemotherapy – I am typing. The doctor I work with who was trained at Dartmouth and is now here running pediatrics, wants to start chemo on this girl. Today. She wants to start today. She is anxious because this girl has sat here since this summer with a tumor that at this point is probably as large as her head, sticking out from the side of her head. It sticks out from her right ear and cheek and protrudes out in a way that people just don’t see in the U.S.

Of all soft tissue tumors I hear that rhabdomyosarcoma is the most common in 2-6 year olds and 11-23 years old. It commonly occurs in the head and neck as it is in this girl but can occur in other parts of the body as well. It is important to be able to stage a tumor like this – so I learn. If we were in America staging would have included a bone marrow biopsy and other tests. Here we just did a CT scan and to her doesn’t look like any metastases, but we don’t have sophisticated tools like U.S. so can’t be sure. In U.S. she would be treated with chemo, radiation and possibly surgery. This would be true even for a very advanced stage that has metastasized. Under the best of conditions, there is a fairly good chance to cure this cancer. But it really depends on how advanced the disease is and how good care is. We don’t have anyone in this room who is expert at giving chemo care. No district hospital in Rwanda has every given chemotherapy, and no where in Rwanda is radiation available. Not even the best private hospital built by the Jordanians in Kigali. And we don’t have a hospital set up to provide intensive care. One option is not to treat her cancer. We know that if we don’t treat it it will eventually kill her. It’s already growing quickly and will invade her meninges and invade her airway or advance to her brain in some way. She has already lost hearing and sees double on the side of her face where the tumor is. It creeps in and around cranial nerve five and is her sinus covernosum.
The other option is to do chemotherapy and if so, whether or not we want to do it here. A pedi oncologist in the U.S. has been advising her from the states about how to give it. And she has somewhat modified the protocol knowing we can’t modify side effects and risks. So obviously chemo has a lot of risks and very possible we could kill her. And the father/child have been talked to about it and given their understanding, the dad wants to do whatever they can to help her. We told him:

Chemo drugs are toxic.
Cure rate is 60-70%, in the United States, with the best of care, if no metastases already – and this rate may differ given our resources and staff here.
Her treatment would be 3 medicines together (Dactinomycin, Vincristin, Cycolphosphamide), each given on same day each week for 12 weeks.

Dr. Adolphe right now is saying (in French, all my communication with staff here is about 85% in French, the other 15% speak English – but this meeting is French):
Not treating is not an option…Treat her here or somewhere else are our options…

If possibility to send her somewhere else w/ expert care than that is what should be done…

If not then we are all she has…

We aren’t the U.S. and it is unrealistic to compare…Bcs. There isn’t anything here at that level…in this entire country…(he seems somewhat exasperated when saying this, as if the sibling who is not performing as well in math is constantly getting compared to the sibling that does perform well in math and the sibling says – well I’m not him! I’m different – I have other strengths – but that’s not one of them – can we stop comparing)…he continues….

So we have to look at what we have here, he says.

Modeste (Chief Nurse of the Hospital):
All examsand labs can be done here at Rwinkwavu. Every hospital in the world has had to start somewhere. Everywhere had to have the first time they did something. This is ours. This is Rwanda’s district hospitals. Even places where they never did chemo, they had a point to start. There is no other option.

King Faisal sends a lot of patients home with tumors like this because they say it is too advanced and they don’t treat.
I’ve already sent a lot of patients there to be treated that are sent away.

Blaise:
Don’t have way to test:
K+

Na+

Sara:
I think we can do it just as well here as CHK…we care about her here…we are committed to her case…that means a lot….Most important is CBC 2xweek, creatinine, LFT’s once a week.

Lucy:
It would be better to send her somewhere else with the top of the line medical options and training. But we can’t keep doing that either.

Decision: Than let’s do it.

Want to cry. Don’t want to do it. Would prefer to send her to K.F. but if they are going to do this here, if that is the group decision, then I can’t watch with my hands tied. Because I have better experience here than any nurse. And to me it is unconsciousble to watch them flub up while I say, “I told you you couldn’t succeed.” So I am going to have to help. And then I think of the work involved, teaching how to do IV’s, hygiene, teaching how to keep track of constipation, urine output, hair falling out. All the –penias: pancytopenia, neutropenia…We will have to watch her closely I reinforce.

I told them, since we are a district hospital, and the first to do this, it would be ideal that our first attempt at chemo be a success. But in this case, I have very little hope that this case is going to be a success.

So the decision is yes, let’s do it. 5 people Blaise, Modeste, Dr. Adophe, Christine, Dr. Sara, are all a yes.

So 5:1.

I have said my peace. I have said I have very little hope that this is going to be a success. I guess the hard thing is, is that I hear this 60-70% success rate, and the statistics are U.S. statistics, and I want to say, docs in the U.S. don’t see kids like this. (see photo) and so my hope is 0% that this is going to work.

I guess that’s the big problem. I don’t think this is going to help. I think it’s too advanced for treatment to help. So we are going to kill her slowly with our chemo. That’s how I feel. At the same time, if the decision is to treat, I’m not going to not help. And not helping her is not an option either. Like I said, the best choice is to send her somewhere with excellent care. Like the U.S.

Maybe I will be the one who ends up looking like the fool. For being so overly concerned. For telling Sara I am dreading this. Maybe Sara’s decision will cure her. I hope so. I swear to God I hope so. I hope I’m wrong.

Only time will tell. I will deal with this one with the following rules. Generosity of knowledge, love, protection. Discipline of taking care of her and educating the nurses.
Patience with the process. Exertion to keep at it and keep doing a good job. Meditation and prayer that the nurses here really take care of her and that she heals. Knowledge that sometimes we are put in positions we don’t want to be in, and yet we are, and remember the world is much bigger than here. Transcendental knowledge that I am not even aware of. A higher reality and even than this another reality. Of the people outside Rwanda and Africa. Where things are run completely differently. And who is to say what the right choice is, except God.

PS I gotta’ go read up on chemo now. Since I’ve never started it before. I’ve just participated in the process and with patients and the care around them. I’ve never given chemo myself.

I got malaria

2006-11-10T19:17:00.000+02:00

So internet has been out in Rwinkwavu. Sattelite went out of orbit. So with that, has all internet communcition. We have to drive into Kigali if we want an internet connection now. A huge two hour ride pain. So what has happened is that I have just stopped writing, and then in the interim, over this past month, I also stopped taking my malaria meds, only to have my swaggert stubbornness come and bite me in the ass, because I got malaria. I’ve been suffering from it all week. I am just coming into the light again. Of being able to laugh, and walk and eat normally again. A lot of people here get malaria, so it’s no big deal where I am. The poor die from it because they live far away from a health center and they don’t know what signs are what and when they need to get to a hospital or health center for. I on the other hand, just noticed myself getting more and more lethargic. Having less and less energy as the days went boy. Drinking more and more coffee throughout the day thinking it was going to pep me up. Going home to make it. Amping up my coffee consumption to night time too, because I was just so tired. Then sleeping more and more. 9 full hours of sleep and I would still wake up feeling fatigued. I didn’t know what was wrong with me. Then I thought maybe I’m anemic. Maybe I have low iron levels. The food here isn’t always that well varied but I put the thought aside. And then this weekend, after a weekend away with Dr. Sara, and a couple of other PIH staff at this resort hotel on a lake on the other side of the country I just wasn’t feeling well rested. I forced myself up. I jogged. But I was incredibly sleepy after. Not revived. I didn’t talk about it. I talked instead about this bothersome pill esophagitis I got from swallowing my doxycycline without water over a period of a few months and it has what feels like forever burned a hole in my throat. Of course only after I do this do I read the bottle, drink with a full glass of water. And I hear of other accounts of people here who swallowed their doxy at night and went to bed and had this painful esophagitis following. Well then comes Monday, everyone feels all refreshed I said I did too, but inside I didn’t. Inside I wanted to say, “You know, it was nice to get away, but I still feel tired.” And then Monday I had diarrhea, and in a country where I haven’t had really any GI issues…I knew diarrhea was a sign of something. With my fatigue. And I went to the lab and tested myself for malaria. Pricked my own skin, put it on a glass slide. Gave it to the lab tech and she squeezed the purple stain on it. She told me it had to set for 20 minutes so I came back in 20 minutes. She wipes rinses it off w/ water, wipes it dry on the edges, waits for the purple stained part to dry more and then she puts it under the microscope. Malaria + she says. Just 1+ not the 4+ we sometimes see. But it’s there. I ask to see it, and she tries to show me how it is like the text book examples, there are lots of text book examples so I ask her to show me another, she looks for another. Shows me what is supposedly a red blood cell and this little tale like thing inside is the p.falciparum. I say let me give another sample. I wasn’t convinced. I prick myself again. Harder this time. To get a better sample. I hate pricking myself. Don’t know how diabetics do it. But I do, and get a larger blood sample onto the slide. I wait another 30 minutes. Come back. She rinses off the purple stain off the slide. Dries the edges. Waits for the middle to dry by air. Places it under the microscope. And then finds one. A p. falciparum. She gets me the laminated example of pfalciparum trophozoites and shows me how mine matches. She draws a picture for me of the field and where the malaria is. I look. Look for the red blood cell and then match up her picture to the field I am looking at in the microscope, there it is. It looks like one of the samples on the laminated card. P.falciparum there he is. No wonder I have been so fatigued. Feeling so bad lately. Not telling anyone really, but just feeling very fatigued. So the next day, Tuesday, I just conked out. I really felt awful. Like the worst flu ever. My body ached. Muscles ached. Spine ached. Head ached. And for the next two days I was just sick as sick can be. Threw up, nausea. And now, third day on anti-malarial meds and I am up, appetite returned, not as much pain, almost 0 and I can do other things, read, write. Think. So I guess I had to learn the hard way as it seems I always have to: malaria prophylaxis, yes, you have to take it if you don’t want to get malaria here.

Belated posting...

2006-11-10T19:13:00.000+02:00

So once again, it has been forever since I’ve written. So much going on. So much to do. An endless task. Sisyphean is this work. Month 6 and I will admit I am both encouraged and discouraged. There are changes in care. Small ones. There are children who live as a consequence of therapeutic milk given to advance them quickly from a state of severe malnutrition to an improved state which is more viable to life. We do that. We give antibiotics that didn’t exist here before, a) because there were no paid staff in this part of Rwanda to give them, b) there was not enough money provided by the government to buy the medicines they needed even if they had had well trained Rwandan doctors out here. They had neither. So most everyone in those circumstances around here just died. That’s why they are so grateful to the doctors for their care. Yesterday there was a large ceremony to thank one of the PIH doctors for saving his life. Dr. Henry (as patients call him here) put him on ARV’s and TB meds and although he came in like all the rest of them, on deaths door, an unimaginably low weight, wasted, dysentery, fevers, infections, cough, dying, he was HIV+ and once on meds, well, now, he is throwing a party for Dr. Henry, giving him his best cow. And the whole village was there. To celebrate. Love they said. That this is a love cow was how it was translated to us. For what Henry did. Because prior to Henry being out here, this man said in his toast, he knows he would have died. And the poignant truth is, he would have. Without ARV’s, without someone here to do the tests and run them, and send them to Kigali to find out what the CD4 count is in order to better assess where the person is. To treat other opportunistic infections that come along the way as a result of the process, well trained docs can take care of this kind of patient, and actually create a life for this person, their health will return.

That is the hero side of this work. That is the side where a presence of intelligent individuals who have had the opportunity of education and resources, can come here, and truly see the power of their contribution. It is not something that should give anyone a big ego, but I also think the importance of that contribution should be acknowledged. It is medicine and treatment and docs and supervision, one patient at a time.

I do wonder if one day people will look back on the turn of the century, 1990-2050 and we will seem antiquated and barbaric to the future. They will look back on us and they will see not Tuskeegee Syphilis Trial, or using prisoners for medical experiments as the barbaric inhumane things we see them as now, but they will look back and see countries ignoring all these poverty stricken places and for all intents and purposes, turning their backs. And I wonder if in the future, turning backs on the world’s dying will be seen as just as crude and inhumane as medical experiments on prisoners. Or torturing animals. Ignoring will be just as bad as killing.

I do think these areas can be helped. I do believe that the local governments need to be a part of this decision making process of how to improve health care, and agriculture and economies. As painful as that may be for people who are used to areas with quicker internet connections and more consistent electricity and a history of well run democracies. I see it as an essential contribution we have to make to humanity now.

But I will admit, the work does get tiring. It is one small drop at a time. And you look at what’s on your plate, and although there are patients celebrating doctors by giving their best and only cow, there are other times that are seemingly hopeless. If those with more resources both within this country and outside of it, don’t start pitching in, the world at large will be in trouble. It’s the rich people and companies who are not concerned about contributing to the solutions that I think just don’t see this. I feel like, give me two days, with any one of these people who would rather live a life of money and I will show them the importance of living a life with a sense of message.

2006-11-10T19:09:00.000+02:00

Yum...

2006-11-10T19:08:00.000+02:00

Another HIV+ patient that I went to visit with one of our accompagnateurs. The accompagnateurs are an essential component of helping these patients take their meds everyday. They are a fantastic group of community health workers.

2006-11-10T19:06:00.000+02:00

Last year when PIH came to this area of Rwanda there were no children that were on anti-retrovirals if they were HIV+ with low CD4 counts. Most likely they hadn't even been tested. Now we have over 200 kids on ARV's and doing great. These are some of our kids - they are a true joy!

2006-11-10T19:01:00.000+02:00

All HIV+ kids from my town; all on ARV's with our accompagnateur program.

2006-11-10T19:00:00.000+02:00

When this child first came in I posted a picture of him. He had excoriated skin all over that was covered in purple antiseptic dye. He looked horrible. This is the child when he was all healed. A total pleasure!

2006-11-10T18:58:00.000+02:00

Luke and Janvier - Janvier is on Luke's back, he is largely deaf although after an audiology report we found out he has mild hearing. A kind couple from Italy just got him a hearing aid, and starting January he is going to go to a boarding school for the hearing impaired.

2006-11-10T18:55:00.001+02:00

Our lab team

2006-11-10T18:55:00.000+02:00

Docs checking out an x-ray at our hospital

2006-11-10T18:54:00.000+02:00

The pediatric ward where I work

2006-11-10T18:53:00.000+02:00

Hanging a mosquito net up in one of our patient's houses

2006-11-10T18:52:00.000+02:00

Braiding my hair

2006-11-10T18:50:00.000+02:00

home visit Tuesdays

2006-08-03T22:35:00.000+02:00

Progress is more plausibly judged by the reduction of deprivation than by the further enrichment of the opulent. We cannot really have an adequate understanding of the future without some view about how well the lives of the poor can be expected to go.

Amartya Sen, “Will There Be Any Hope for the Poor?”

It’s been two or three weeks since I last wrote. Amazing to me how the first few weeks I was here, things seemed to go quite slowly, I woke up every morning and wrote, either to my journal or to the blog, but now the time escapes me, and I don’t even know where July went. Part of it I know went to the two big visits we just had here. Saturday before last was Bill Clinton and the next day was Bill and Melinda Gates. Clinton’s visit was the first time he actually stepped into the depths of Rwanda, so I heard. The first time he came to Rwanda it was just to the airport, the next I think he might have gone to a hotel. This time, he was here at Rwinkwavu Hospital. The Bill Gates visit was the next day - a smaller quieter affair although equivalently important. There is a lot of preparation that goes into a visit like this. It’s like having dinner guests come over for Thanksgiving and you’re really trying to go all out; everything gets an extra polish. Except with house guests, you’re usually just trying to impress just to impress, or you go the extra mile to make them feel at home and comfortable. In this case, impressing could have huge rewards for the poorest of the poor here, so it’s worth taking the time to buff up a few extra windows and clean a few extra mosquito nets over patients’ beds. It was reassuring to see though, that in lieu of all the pomp and circumstance of the Clinton and Gates visit, PIH is always and will always be an advocate for the poorest of the poor. It is an organization that will never have the majority of its staff located in a capital city, shipping Muzungo’s into the countryside on an occasional once a month affair, discussing policy of the poor far away from the realities of the population suffering most from a world economy that so far does not trickle down. Yes, we may have made every effort to show our best side to Bill, Melinda, and Clinton, but we were, that whole weekend, advocates for the patients.

It is so clear to me that being here in the thick of things is the only way to see the 11 year old girl with a facial tumor so large it has distorted the features of her mouth and cheek. The whole pediatric ward smelled like rancid meat because of that tumor. And after asking, we came to understand that this tumor grew over a matter of 6 months. The young girl had been to one or two health centers over the past few months and she was treated with medicines we don’t know the name of that didn’t help her situation. The father and daughter ended up walking here from the other side of the country because they heard we had free care. And so we did an x-ray of the tumor and although some thought it would be deeply involved with the bone and virtually untreatable without access to chemotherapy in this country, we came to find the other day, the tumor does not penetrate the bone. We may actually be able to treat her here. She may be able to become better with surgery and antibiotics.

And this is another thing that has been the most meaningful to me these past couple of days: I like it here. The sunsets at 6:30pm are magestic. God like. The children who get better from malnutrition as wonderful and darling as any child can possibly be. My efforts may be little by little, one person at a time, one family at a time, but there is always someone. I may not be able to help all the kids, or save a child who basically starves to death, or give every person who wants it gifts. But I can do something daily. I can be present to the moments at hand.

I did a home visit on Tuesday and the family there had a 4 month old that was admitted to the malnutrition ward at 1.5 kg. That’s the size of a premature infant in the U.S. The baby was discharged at 2.6kg/ 5 months old because she was gaining weight consistently over a couple of weeks as, surprise surprise, we gave her food. And when I went to visit this child on Tuesday, the mother lived with her husband. They are subsistence farmers with 5 children. Refugees to Burundi during the war. Returned to Rwanda with nothing, not a pot to cook in. Now live in a mud hut like the one I have shown in photos here and I could see their struggle. I could see them struggling to be able to have all school age children of theirs in school. It was a priority for them and they had done it. I saw them talk about how they are struggling to pay their rent because they can’t afford to own their mud hut, they have to rent it. I could see a sensitive and intelligent father who wanted to learn how to make the baby formula just as much as the mother, so he could help, since the mother was not producing enough breast milk to keep the child alive. I could see a man who studied to be an artisan but couldn’t get a leg up in life because he was just trying to keep them all fed and rent paid with small little jobs here that weren’t permanent. Making bricks for awhile here. Finding another small job there. Odds and end things. He wanted to work consistently somewhere, but nothing near for him. And so I asked him how much to buy a house like this one they were living in. They called in a neighbor who would know better. The neighbor looked into the air, upward, as if doing the calculation in the sky, then said, “30,000.” So I’m thinking, “That’s 60$. 60$ to buy a house for someone.” But I also know that if I just continually pass out 60$ to all the families I see, I won’t have money left either, I would like a more durable solution (I do have $80K of school loans to pay back), but in truth, there is not a person here who I am not in a position to help. I also want there to be some pride for this proud man. I don’t want him to think it’s just a hand-out. I don’t want him to think that his ability to care for him and his family is dependent upon what I or some other outsider provides. I’d like to give a sense of responsibility, that with some work he can own this place, I’ll make it easy for him. Right now they are hand to mouth – dependent on personal health, good rains, access to water and no bugs eating their plants. So I asked him if I gave him 30,000 could he build a house for his family. He discussed this with not only his wife, but the other Rwandan PIH people I was there with, the other nurse, the nutrition educator, the driver, who was sitting in this mud hut with us, giving encouragement to the father too. And the father turned to me and said, “It would be better to buy this house.” His life was there, the children were settled, it had a nice patch of land to grow food that he was already cultivating. If he got 30,000 he said he’d buy it from the man who rents it to him. So I said OK. I’d like to buy the house for him. But I said I wanted the rent that he now gives to the man to instead go to me, but he doesn’t have to give it to me now, or this month or next month. I have no intentions of being a slum lord. I want to help. That I’d rather have him buy what he needs for his family over the next couple of months with his hard earned money, put a tin roof on his house rather than banana leaves, take time to find a good consistent job without having to worry about the rent for the week, and he can pay the rent at the end of the year. 1200 francs which is what he was paying for rent now x 5months = 6000 Rwandan francs at the end of the year was what I asked for. $12 for me.

So we’ll see. I’m going to go back there in a couple weeks with the same Rwandan crew I went with last time and see how it’s going. See if he was able to buy the house. Make sure everything is rolling forward OK.

And who knows. Maybe the family will disappoint me. Go off and spend the money frivolously on who knows what. But I don’t think so. A) there’s not much frivolity in the countryside here. Banana beer maybe. Can’t spend 30K on that. And b) I just felt like they were trustworthy; their concern for their children, the father’s involvement, the mother’s knowledge about which kids had which vaccines. If so, and if I keep doing this at home visits, I’d like to get some micro credit projects going here. There isn’t anything here right now. For all the money I get back, I can put it in a pool to help other families. I need no personal profit from this. I make an adequate salary via the Durant Fellowship. I don’t need to earn any more. I merely want to do it to create a system for them. Infuse it with some money so they can start creating micro credit for themselves. Like I said, he’s the first one. So we’ll see. I hope it does more help than harm. I think there are a lot of good intentioned people in this world whose efforts actually do more harm than good, unbeknownst to them. I may be one of them. Who knows. I think this is particularly true of the NGO community in developing countries. All these great well-intentioned ideas that don’t end up really helping the community in the way they need. And the only way you’ll ever know this is by living here. In it. And better yet, being able to speak the language so that you can directly connect, without a translator (which I am not able to do yet).

But nevertheless, all this is to say, I like being here amongst the rural poor. We are as close to the medical, social, and economic issues of the poorest of the poor as anyone in this country. What I am seeing and feeling as I work in the hospital, and out in the community, is that a basis of medical rights, water rights, land rights, food rights, education rights are tantamount to a fair and just life. With the tragedy of a child or two dying a week, some who die while I’m trying to save them and they go floppy on me with neither heart beating nor breath (these children would not die in the U.S.,Europe, Japan – these deaths are preventable), some who die when I’m not there, is that these people need what I am told Haitians call decent poverty. It’s not freedom of speech, freedom of assembly we’re struggling for here. It’s freedom to water, food, education and medical care. As Richard Gunderman says,

What is medicine about? Is it about maximizing the incomes of physicians or health care organizations? Do patients and their suffering exist in some fundamental sense for the benefit of the physician, the hospital, or the stockholder? Or do physicians and the entire medical enterprise of which they are a part exist for the benefit of the patients and the relief of human suffering?

Medicine and the Pursuit of Wealth (1998)

Here we definitely exist for the poorest of the poor patients and the relief of human suffering. Although we, an NGO, or any organization or church for that matter, do not and will never be able to provide “a right” to a Rwandan, or to all Rwandans for that matter, the government can. Because the reality of our modern world is that the only sector that gives rights to people is the public sector (food, medicine, education for all; freedom of press, freedom of speech; freedom of assembly). It is the government that has to figure out ways to provide the greatest amount of rights to people for the common good. In the meantime, we, PIH, and any other NGO for that matter can help assist in influencing those decisions for the good of the whole while at the same time providing the best medical care we can to one of the poorest areas of the country and that in truth, is the most, an NGO can do I think – relieve human suffering with support, aid, new legislation from the local government of that country. And in that case, the answer to Amartya Sen’s question would be, yes. We can lift things to decent poverty here, and yes, most definitely, despite the hardships that exist everyday, there is hope for the poor. But we have to make it that way.

2006-08-03T21:45:00.000+02:00

2006-07-29T12:53:00.000+02:00

2006-07-29T12:36:00.000+02:00

2006-07-28T23:45:00.000+02:00

2006-07-04T15:16:00.000+02:00

Last Thursday we did a home visit to our friend Mutoni. We went to find her a community health promoter to make sure she stays on top of her HIV and TB meds. These were some of the cows along the way.

2006-07-04T15:13:00.000+02:00

This is Mutoni on the left...as you can see, she has much more spunk than in the picture of her while she was still in the hospital. It was great to see her doing well.

2006-07-04T15:11:00.000+02:00

The fam, Dorothee our nutrition educator (the woman with the big smile on the left), Jean-Baptist our nurse (he's on the far right) and Mutoni, mom and family members. Mutoni's HIV meds and TB meds are front and center.

2006-07-04T15:07:00.000+02:00

...and Mutoni took one of me.

2006-07-04T15:06:00.000+02:00

A last good bye.

2006-07-04T15:04:00.000+02:00

This weekend some PIH friends and I went to visit Claudine at her boarding school. After our visit we spent the night in a beautiful lake side town called Gisenyi and took a much needed break. I was hoping Claudine could come with us, but it was against school rules. We have to wait for vacation to take her on a break away from things.

2006-07-04T14:57:00.000+02:00

On Saturday, some of the PIH crew and I drove out to her boarding school for visitors day. She was very happy to see us.

2006-07-04T14:56:00.000+02:00

The kids seemed to be very entertained and curious about us.

2006-07-04T14:55:00.001+02:00

Virgile rockin out with the puppy.

2006-07-04T14:55:00.000+02:00

Some of her roomates and classmates.

2006-07-04T14:54:00.001+02:00

Claudine and her best friend.

2006-07-04T14:54:00.000+02:00

Last Saturday I went for my first Rwandan hair cut in Gisenyi - a beautiful little town on the waterfront of Lake Kivu - this was the hair salon.

2006-07-04T14:53:00.000+02:00

Unfortunately even though the salon said they had cut and dried muzungo's hair before, they ended up putting tons of oil pomade in my hair called Dark and Lovely. We joked that Dark and Lovely made my hair Dull and Ugly...I wish this pic did the greased up look justice!

2006-07-04T14:50:00.000+02:00

Afterwards, we kicked back and had a few beers. Yes we do kick back and have a few beers every once in awhile.

2006-07-04T14:45:00.000+02:00

Just chillin...

2006-07-04T14:43:00.000+02:00

A last good-bye to our weekend away at Lake Kivu.

2006-07-04T14:37:00.000+02:00

Last week I helped Dr. Blaise review some health center cases. This child had a horrible sounding heart (although it didn't stop her from playing with my sunglasses and stethoscope). From the few diagnostics and clinical observations we have, it is probably a ventricular septal defect. We are referring her to Kigali physicians for potential surgery.

2006-07-04T14:32:00.000+02:00

Me and one of the nurses.

2006-07-04T14:31:00.000+02:00

When the kids are feeling better in malnutrition, they are about as cute as cute can be.

2006-07-04T14:29:00.000+02:00

One of our very malnourished children right now. He may look plump but much of this is swelling and edema. To the point that his skin is peeling all over his body. He feels miserable right now.

2006-07-04T14:27:00.000+02:00

This is a close up of the little boy's under arm and the severe excoriation that is often part of the picture of the severely malnourished kwashiorkor kids.

2006-07-04T14:25:00.000+02:00

This is a close-up of his arm with peeling skin from malnutrition.

2006-07-04T14:24:00.000+02:00

We will keep our fingers crossed that he will heal slowly but surely.

2006-07-04T12:07:00.000+02:00

This is the same child that I have a photo of in a previous posting that was crying and extremely emaciated with a huge belly, staring at me suspiciously while he was drinking his milk.

2006-07-04T12:05:00.000+02:00

We now have him playing and laughing!

2006-07-04T12:03:00.000+02:00

Probably the sickest kid in our malnutrition ward right now. Hemoglobin 4.2. Gave blood last night as a result. Malaria on top of her malnutrition. If you look closely you can see the flies on her. I hate seeing the flies on these kids. I always wave them off.

2006-07-04T12:01:00.000+02:00

This one died last week. I talk about her below.

Malaria Season

2006-07-04T09:33:00.000+02:00

It’s malaria season right now. Everyone seems to know this around here. And at the end of May beginning of June, when wet season ends and dry season begins, when the weather shifts from raining once or twice daily, to no rain at all, p.falciparum wields its mighty sword to end more lives than the season prior once again. It is a cyclical process. And it likes malnourished children in particular – sick, weak, easy to kill. What this means for me is that the majority of children in the pediatric ward right now seem to be admitted for malaria. Out of the first 15 patients I saw last week on rounds, the first 13 were malaria. This is not a run of the mill mild malaria, these children, anywhere from 0-14 years old, come in with a severity of presentation that I doubt many nurses and doctors in the U.S. have ever seen, not at least to this degree, and not at least in the U.S. The parents here carry their children to our ward themselves in their arms. The children arrive comatose, seemingly lifeless, and then the mom or dad lays the child down on one of our beds with the child looking like a Salvador Dali painting of limp clocks over table tops: mild to no response to an aggressive sternal rub, no response to pressing strongly across their thumbnail with a solid object like my pen. Often I see children come in with high grade fevers above 39-40 degrees (102-104 degrees F) and rates of respirations in 2-5 year olds around 75 breaths per minute (more than double the normal). I see anemia, hypoglycemia, prominent Kussmauls breathing, decorticate and decerebrate posturing, circulatory collapse (algid malaria) and I have dealt with the heart going into cardiac failure – all because of malaria.

Mind you, these children that come into the hospital are so sick; it is sometimes difficult for me to fathom how parents have to walk so many hours before reaching our hospital, the child in their arms and that the child ends up presenting to us so late in the disease process. Then I wonder how these nurses and doctors do it without getting hardened to the reality of this poverty and its consequent illnesses, but then I look again and many of the doctors and nurses are more hardened to it than me. And I don’t necessarily blame them. You are a rare individual if you can deal with such high numbers of death, poor prognosis and hands tied from more advanced treatment because of a lack of medication, equipment or procedural know-how and not get a bit hardened to children dying. If you were 100% committed to all of these patients and stuck with them through hell and high water, stayed up nights and days to watch them, added additional care like you would for a family member, you would crack from the number of losses. Or you would be a saint.

Yesterday I came in determined to get my rounds done by 11am. I’d touch base with people for an hour, check my email within that first hour and then round from 9-11am in the malnutrition ward. I have been trying to round on my own in the malnutrition ward, with other nurses or nursing assistants translating for me, and then reporting the most severe cases to the doctors for consultation. I’m trying to do this because we round here with one doctor and one nurse on ~60 patients. I figure if I can lessen the load for them by ~25 patients, it helps. But then the nurses were all ready to meet regarding a new schedule I wrote up for the next 6 weeks trying to a) distribute the shifts more equally and fairly and b) make sure nights and weekends were covered by 2 nurses and 2 nursing assistants, rather than 1 of each on nights and weekends (with ~60 pediatric patients here at any given time only 1 nurse for all 60 patients overnight is not enough to decrease mortality rates here – kids are going to die at that nurse to patient ratio – it’s not possible to take care of everyone – at MGH we complain when we have 7 patients in a night – imagine…1 nurse taking care of all of MGH's Ellison 17 and 18 plus PICU. What it means is either, one very ill patient gets all the attention to the neglect of all others, or all the others are watched more closely to the neglect of the one dying.)

So yesterday, before I knew it would be another malaria death day, I am meeting with the nurses about schedules. It was like a British Parliament session, discussion, bantering, passionate debate all in Kinyrwanda. I had no idea the topic would elicit such a thorough discussion. Through a translator I am told that they need time to examine their old schedule and study the new schedule and that they will come back to me with a consensus. I was actually looking forward to this. Because it seems the schedule system could be improved and although no one seems to have worked on this topic exclusively, now that it was re-presented in a different fashion, I think it allowed for an open discussion about times and work hours and such. At least I hope so. About this time, Alice, the nutritionist, gets me out of the meeting and tells me there is a child she is worried about. The past few times I have learned that Alice is getting better at assessing when a patient is doing poorly, or needs more assistance than the child is getting, and so now I have more confidence in her. I hope also she is learning that when she sees a kid doing poorly that there is actually something we can do for him or her. So I leave the meeting, go to the malnutrition ward, stethoscope and Harriet Lane in hand. And just like the 10 month old with malaria I ended up doing chest compressions on last week, this toddler looked in the same shape. ( The 10 month old was a child who came in the week prior, during a Saturday night while I was there, and when I went to examine the child when she started all of sudden gaspingfor breath, fast and loud, there was no heart rate, no pulse, I listened again and again, incredulous that there was no heart beating, had the nurse confirm and once he said, “Oui, il n’y a rien,” I immediately started giving chest compressions, then carried the infant to another bed where our one oxygen tank was and took our one oxygen source off a 7 day old baby in respiratory distress and put it on the 10 month old baby with no heart rate and started giving more chest compressions, cranked up the oxygen tank, gave more chest compressions, had the nurse pull up 50% glucose and adrenalin, gave both, gave more IV fluids, got blood transfused into the child…and low and behold, the heart started beating again…the infant survived – I couldn’t believe it – the moment when the heart started again I just kept listening to the heart rate again and again with my stethoscope – checking the pulses – is that possible? Did the heart really start beating again? It was unbelievable to me – I am still in somewhat disbelief that what I and another nurse did together started the child’s heart again. Not only did the infant survive, but she went home healthy and happy, continued quinine medicine in tow just a few days later. Was also the second time in my life I’ve ever done chest compressions. The first time was with the child who died a few weeks prior.)

Anyway, this child yesterday looked in the same shape. Close to comatose. A loud rapid gasping for breath with deep sternocostal retractions on the toddler’s marasmic ribcage, eyes rolled back and lethargic. When I held her fragile skinny arm in the air it flopped down like a rag doll (like I have said before in previous writings) and I cursed to myself, angry that this child looks now like two children I have seen before in pediatrics who have been in critically bad shape. One who lived, the other who died.

So Tuesday’s child, had a heart beating; it was a regular rhythm but faint, I counted the respiratory rate. It was ~75/minute on this 7.8kg 2 ½ year old. I could not feel a pulse in one of her wrists, but the other one I could feel – a rapid feeble thing but nevertheless, a vital sign. I notice I depend a lot more on vital signs here. It is a reassurance for me at this point – got a pulse, your breathing, OK, good sign, good sign. Unfortunately we only have one machine to tell oxygen saturation and it is often finicky and doesn’t work and of course with this child, it wasn’t working. So you focus on what you have – respiratory rate and heart rate. Limp, unresponsive to verbal questions and commands, eyes rolled back, pupils dilated. Now problem is, I was told by one of the docs here that kids who are malnourished are very sensitive to fluid overloads and electrolyte imbalances so adding IV fluid to their regimen is something that needs to be done with great caution. So I was hesitant to start an IV on this malnourished mixed kwashiorkor/marasmic toddler. I stalled a bit in the decision making process and listened to lung sounds. Cursed to myself again because there were crackles in the left lung. Fine quiet crackles but crackles. This makes me even more hesitant to add fluid because the child already has fluid in the lungs and it was the reason we stopped fluid on the child who died about three weeks ago, he developed crackles in his lungs not long after administering the IV fluid. So instead yesterday, I figure, OK, fluid in the lungs, I’ll stall a bit more, lets get as many labs and as much info as possible. I take the baby myself, wrap it up in a urine soaked blanket because there is nothing else and take her to radiology, jump in front of the line, take her straight into the room and the lab tech sees the urgency in this tiny little 7.8kg child gasping for breath loudly and rapidly, and we take off her clothes and the lab tech puts a protective gown on me and I hold the baby so she can have a chest x-ray. Then I take the baby back to the ward and try to draw blood. Again, she is a Kwashiorkor/marasmus toddler so her feet, cheeks and belly are swollen, but her chest and arms are concentration camp thin. A vein is incredibly hard to find on her. Plus she had diarrhea for the past two days despite a solution we give for that, vomited much of her fluid intake despite her NG tube and is dehydrated, skin tents on her chest. Then on top of that her skin is black and I am still not very good at finding a vein in tiny black marasmic arms of 2 year olds, especially when complicated by all these other factors. Nope. I can’t get anything. I have another nurse try and she can’t get anything. We have a person from the blood lab try and he can’t get anything. I know she probably needs blood. At least by my new bush medicine standards...which is you look at the conjunctivae, pulling down the lower lid of the eye and if it’s pale white, they probably need blood – that’s a hemoglobin of 4-6 and we transfuse below 6-7gm/dL. So the lab guy said, “Can’t we just transfuse her anyway?” And I said that would be great except I thought if we can’t get enough blood to do a hemoglobin, how can we get enough blood to do a cross and match. And he brings out some dies and chemicals and his glass slides right by the bedside and says he can figure it out right there. She’s 0+. I thought we were low of 0+ at the hospital so I said if we have it, then let’s give it, but I thought we didn’t have any here.

I’m basing a blood transfusion on the look of conjuctivae by the way, of pulling down the lower lid and looking at the moist inner part. Crazy it is. Truly crazy to me. In the states you’d be running all sorts of labs, getting all sorts of consents and permissions for a transfusion, it’s taken very seriously and then we monitor very closely HR, RR, monitor any potential anaphylactic reactions every 15 minutes for the first hour. Yes here, like everything, it is a different situation. Here you look at the conjunctivae and the rest of the clinical presentation and often before you even find out the hemoglobin, if the child is comatose with a positive malaria smear and white conjunctivae – we transfuse. The lab tech said he would go and look and send the blood over if we had it. We had it. So by now, a nurse got an IV placed in which fluid would go in, although we still couldn’t draw blood out. I ran Hartman’s Solution and D5% at the same time. Well I didn’t run it, the nurses set it all up. And if I could explain how they piggy back here, let me just say it’s quite rudimentary. So we’re now piggy backing fluids and I’m watching vital signs, listening to lungs and again cursing silently to myself because the baby is most definitely getting increased fluid in the lungs as the fluid goes in more, but then I decided better to have some fluid in the lungs then let her lie there gasping away horribly to her death so I continued with the fluid. Listened to heart sounds, listened to the lungs. Baby is looking pretty lifeless. Gave some lasix, just out of some bush medicine tactics thinking that maybe if the baby has fluid overload, that I could help both give the needed fluid and get rid of the other fluid I didn’t want at the same time. By this time blood arrived and we hooked up the blood, stopped the IV fluid. Lung sounds are now coarse crackles throughout both lung fields. I have probably been working with this child all morning and it’s now 2pm. I am tired. I’m actually pretty hungry too. But no one is watching this blood go in, or the vital signs, so I stay and record. Monitor. Record. Monitor. One of the docs I work with regularly had come in by this point. Agreed with the management, suggested we add 50% glucose, which I was going to do, but just hadn’t done it yet…was sort of holding off for some reason, watching blood go in, and then he gave sodium bicarb via IV being that this baby was probably in a metabolic acidosis from diarrhea further complicated by fluid overload. That was my diagnosis. Although who knows. There are few labs to confirm any of these diagnoses. No way to find out any of the serum electrolytes. No way to find out bicarbonate levels. Again diagnosis here is largely via clinical observations. The way a patient presents, her history, her current status, the way the course of her illness progresses, her fever patterns. Like the majority of the world who has few doctors and nothing close to an MGH in the country, we diagnose by clinical picture ( I heard that there are 400 doctors in Rwanda for 8.5million people). Anyway, there came a point where we had done everything possible for this little toddler. Or so I thought. So did the other docs think. Gave oxygen, gave volume(d5 and hartmann’s), gave blood, gave sugar. Now all there was left to do was wait. Feels odd to just wait in circumstances like this. When a child is on death’s door. You mean, I can just go? Like go on with my day? Go check my email and finish rounding on the other patients here? Doesn’t feel right. But I did. And I kept checking up on the little girl. And low and behold, her eyes opened a couple hours later. And she started looking around, very alert. And then her mom gave her some milk. And she drank it. And didn’t vomit it. And I was sort of in disbelief. Again. Is it working? Did what we did work? And I hear her talking to her mom in her cute but weak voice and I thought, wow, all is well. She was sitting up, drinking, talking. I felt so relieved. She would get better from here. All is well.

I came in the the next morning and the child’s bed was empty. I asked the nutritionist where she was and she informed me that the child died overnight. I am guessing heart failure from pulmonary oedema. I am also guessing, now, as well as everyone else, malaria. Which I and no other doctor checked or treated her for at the time. But most definitely that rapid decline like that was a malaria that was not diagnosed – masked by malnutrition. My giving fluids in her fragile state could have even precipitated her death. But what are you to do? These are decisions you make with your best judgment, using all your know how, and for that child I was largely on my own, with no one to ask and two doctors who came in afterwards later in the afternoon agreed with my management, so again, “Qu’est-ce qu’on doit faire?” I can honestly say I did what I thought was best given the circumstances.

So she was another malaria kid – yes, of course, it’s malaria season, just because it’s the malnutrition ward, doesn’t mean these kids aren’t catching malaria in the hospital. In fact many of them are. And now, any kid who isn’t getting better, I’m getting malaria smears on. And of course, the malnourished kids often don’t spike fevers because they are plagued with hypothermia so the fevers are masked by the hypothermia and since this child had an NG tube anyway, when she vomited, I and all others here thought it was due to the NG tube and her malnourished state and not a new onset malaria. And not only was it bad to hear this little girl died over night, the next day they move the next sickest child in the same bed, I was sensitive to it because I didn’t want that to become the death bed, the bed the kids who are dying go in, although this time we do a malaria smear right away on the malnourished child and she is GE +++, meaning very prominent malaria. And we do all the same things I did the day before except now we have quinine in the mix. But this child is younger and smaller, and breathing more desperately than the child from the day before and I just prepared myself. This one is going to die tonight. There is no way she is going to make it. She was in even worse shape than the child from the day before. I prepared the nurses, “She’s probably not going to make it tonight.” Although I think the only person I was preparing was myself. I gave one of the nurses a list of what to do overnight anyway. I decided to give Lasix this time every 4 hours 3 times throughout the night because I didn’t want to see the fluid overload I had seen from the day before. The Medecins Sans Frontieres guidelines suggested this. Because again, this child was dehydrated from vomiting and diarrhea and yet receiving fluid with crackles in both lungs. Not a good situation in which to add lots of fluid, and yet the child needs fluid. So I prepped myself. That this child probably won’t make the night. And when I came in the next morning, I didn’t go straight into the malnutrition ward, I wasn’t up for it yet, instead I went to look at my email in another office far away. Ease myself into the day. And when I saw someone from pediatrics I said, “How is that child that wasn’t doing well yesterday?” Waiting for the negative. And the nutritionist replied, “Well. She made it. She’s doing really well. Not on oxygen anymore. Eating. Drinking.” I couldn’t believe it.

Who lives and who dies? I feel like I have no sense of it here. Presentations are complicated. Management is by and large poor. Resources are limited. Malaria is, I am learning, as life-threatening as it is commonplace.

With malaria here, kids present with hypoglycemia, anemia, fevers, or no fevers if they’re malnourished, respiratory distress, some have cerebral malaria, those ones often present severely comatose, Glasgow Scale <5 meaning response to pain is often only to sternal rub, eyes do not open to verbal commands, aggressive stimulation or anything else, kids have doll’s eyes where when you move their head side to side, the eyes float the opposite direction of the way in which you move the head, or sometimes one eye floats in one direction and the other in another direction – unrelated to each other, no verbal or motor response, decorticate posturing. It is malaria at it’s worst. Some kids come out of this comatose state and miraculously, do fine. One doc called it the Lazarus effect. Supposedly 10% have neurological sequelae, so I read. And some die. I am seeing about 1-2 deaths a week here in children mostly less than 5.

Casualty of war. That’s the phrase that for some reason always runs through my head when I see a child die here: casualty of war. And then I ask myself, “Who’s war is this? Who’s who in this battle?” Unlike Iraq or Sudan, this war is something all together different. The perpetrators nebulous, the struggle misunderstood, perhaps the people, who say they are on the side of the dying children, have chosen not to fight hard enough, or they think the problem too large. It is apparent though that not many are fighting in these trenches – not many who are highly capable with large resources that is.

In sum, in Rwinkwavu where I am, children seem to be dying from malnutrition and infections: malaria, meningitis, HIV/AIDS, malnutrition. At MGH I never saw a child die from any of these things. In fact, I never saw a child die. In all of my almost 2 years in pediatrics I saw only one patient with meningococcal meningitis ( in 6 weeks here I've already seen 2 cases) and although he had severe neurological damage from the infection, he didn't die from it. And there are other children who died who were chronically ill and took their last breath either at home or in the PICU, but these particular children hadn't been doing well often for years. We knew usually their deaths were imminent - at some point or another. But all this aside, I never once actually witnessed a death occur on the pediatric ward on Ellison 18 during one of my shifts. Quite different than the large percentages chronic or congenital diseases I saw in the US, most of what I see here in Rwanda is treatable and curable, given the right context. It is something that like early this morning, I lose sleep over, so I am getting up right now at 4am to write.

To top all this off, as if the weekly deaths aren't enough, in this area of Rwanda, many of the moms accept the death of their toddler with a palpable stiffness and a spoonful of quiet tears. Some mothers don’t cry at all and instead stare into space blankly not a tear to be seen - an acceptance that I have yet to fully understand. I think this is because there is so much death in their environment, that a child dying is yet another child they have had that has died, or it is their child now on top of the two neighbor’s children they saw die this past month, or perhaps they are numbed a bit from their grizzly past, that one more death, doesn’t elicit the kind of outward exhibition of pain, torture, tears it would from a mother in a hospital in the U.S. with a 2 year old who has just died. Here after a death, they more often than not sit stoically, perhaps some tears, but not for long, not because they’re cold, but because I think, it happens so horrifically often. Their response to death or lack thereof reminds me often of the serenity prayer: God grant me the serenity to accept the things I cannot change. Courage to change the things I can and the wisdom to know the difference. Acceptance is the modus operandi for them; their courage has probably been widdled away slowly, one death at a time, one disappointment at a time, one bad agricultural crop at a time, one war at a time.

In the end, I think some of what I do helps. Trying to make them laugh. Tickling. Although if comatose I can’t do any of these things. And sometimes what I do is not enough or even questionably harmful, and it is easy to wonder if I should blame myself. Then I counter my inner dialogue and say, “But no doctor had any different opinion on the matter, everyone agreed with me. No one told me to check for malaria on that kid when the kid started tanking, they did tell me to do all the other stuff I was doing.” So who’s fault is this?

I am learning volumes. I am learning, terribly, the awful way – by the lives and deaths of very sick children. I wake up often now before my cell phone alarm clock rings thinking, “What could I have done differently? Is there anything I could have done differently?” And I then my brain jumps to dosage reviews in my head: Ceftriaxone 100mg/kg, Quinine loading dose 20mg/kg over 4 hours in D5, maintenance dose 10mg/kg over 4 hours, alternate with D5. In my little free time now I review malaria presentations and complications and read up on this little critter P.Falciparum and all the damage he does to these poor children. Malnutrition is the other research topic – I’m just not doing the job well enough. No deaths should be the standard. No deaths.

Prior to coming here, I did not know there was a season for malaria. Nor did I ever feel the tragedy of it. Yes I knew that many children die of it in poor countries, but it was a textbook understanding – it was an aloof “oh that is so sad” – I never felt the pain of it. I, like most people in the U.S., have never been exposed to these things, cloistered in a hospital of modern maladies, and even when traveling, with access to well trained doctors to advise me on what medicines to take, I have always been able to benefit from the luxuries of a wealthier life. Although I see children die from malaria on a weekly basis right now, it is odd to think that in some ways, this bug is something my body can fight. And that these children can’t. It doesn’t seem fair. They are much younger, smaller, and more fragile than me. Fight me bug fight me. Although then again, I have always known this world isn’t fair. And that I guess is one of the reasons I’m here. To try to make things more fair, for however little I have to add to the situation. It is a drop more than not doing anything. And P. Falciparum does a lot of damage with its little drops. So who knows maybe we can do some damage too – in the other direction – and figure out some way, to fight this bug better, drip by drip.

2006-06-15T19:44:00.000+02:00

This is one of our saddest cases right now. Mom is mentally deranged. Father is out of the picture. No one to take care of him or his two smaller siblings. The young girl in the background of this photo is an eleven year old who came with him to the hospital and she is his caretaker at the hospital right now - an 11 year old neighbor - missing her primary school. When he arrived he had no underwear, pants, shoes and nothing to drink out of. So I bought him a blue plastic cup and found some cool blue striped Osh Kosh B'Gosh train conductor overalls in our donated clothes bag to put on him. The little girl keeps his bottoms off though because he's not potty trained and it's easier for her to clean him up. The little girl says she will go back to school on Monday and after that, we will have to take more charge of him ourselves. He's honestly one of those cases where it went through my mind of taking him in. As Dr. Blaise said, "How do men react in the U.S. if you already have a baby? Do you want a baby? He can be your baby."

2006-06-15T19:03:00.000+02:00

As soon as he was admitted we gave him some therapeutic milk and not only did he reach out and cry for the cup, he immediately started guzzling away.

2006-06-15T18:59:00.000+02:00

Although he was suspicious of my photo taking.

2006-06-15T18:31:00.000+02:00

These 2 are siblings. Believe it or not, the one on the right is 1 1/2 years old, and the one on the left is 4 years old. So we admitted the child on the left for malnutrition and severe stunting. I thought maybe they needed a good tickle to get them smiling.

2006-06-15T18:28:00.000+02:00

Yeah!...I got them laughing...

2006-06-15T18:22:00.000+02:00

Dr. Blaise at work. He's excellent with the children. He is also one of my housemates - along with about 4 other Rwandan staff and 2 Mazungo staff.

2006-06-15T18:19:00.000+02:00

The same child as below.

2006-06-15T18:18:00.000+02:00

He was admitted yesterday too.

2006-06-15T18:17:00.000+02:00

This is the same child as below; you can see that his skin is starting to slough off as well.

2006-06-15T18:15:00.000+02:00

Notice the bliateral pedal edema on this child. When you push down on the tops of his feet, he has 2+ pitting edema, plus swollen cheeks, and although you can't tell here, he has hair that is starting to turn blonde - classic Kwashiorkor

2006-06-15T18:12:00.001+02:00

Yesterday I sent four kids home that were ready to go...you might recognize this one from before.

2006-06-15T18:12:00.000+02:00

Although I'm happy my favorite friend is now healthy enough to go home...I am going to miss her daily hugs and big smile.

2006-06-15T18:08:00.000+02:00

Sunday afternoon was...a day at the games!

2006-06-15T18:01:00.000+02:00

Last Sunday, a PIH staff member paid for two buses so that the Rwinkwavu team could have transportation to be able to play the Kabarondo team in Kabarondo. This guy was wishing us farewell.

2006-06-15T18:00:00.000+02:00

These kids taught me all sorts of victory songs as we drove to the soccer game.

2006-06-15T17:59:00.000+02:00

The singing went on and on for the whole car ride there...even as we got to the soccer field and pulled up near the other team.

2006-06-15T17:54:00.000+02:00

While heading to the game, I was in the front seat with the driver on my right - he's wearing my hat :)

2006-06-15T17:52:00.000+02:00

...and the soccer coach was on my left

2006-06-15T17:51:00.000+02:00

Before the game started