Hydrocephalus 101

With Elizabeth at the Mbarara clinic. You can see a dent in the middle of her head where the CSF has drained. She's happy and recovering, though!

I've been wanting to explain hydrocephalus to everyone so they can better understand the conditions the hospital treats, so here's my unmedical attempt to do so!

Hydrocephalus basically means "water on the brain." There are four ventricles (cavities of sorts) in the brain, the two lateral ventricles, which are on top, and the third and fourth ventricles.

The choroid plexus produces cerebrospinal fluid (CSF), which flows around the brain and down the spinal cord (the arrows below show flow of CSF). CSF is a good thing, but sometimes one of the ventricles become blocked (usually between the third and fourth ventricles, I hear), preventing proper drainage of the CSF.

With nowhere to go, the CSF stays in the ventricles, causing them to swell with the fluid and putting great pressure on the brain. Since babies' skulls are still forming (remember the soft spot on their heads?), they grow with the increasing pressure, resulting in abnormally large heads.

Most of the hydrocephalus we see here occurs after the babies are born (PIHC - post-infectious hydrocephalus); it is mostly preventable. Hydrocephalus can be caused by blockage from tumors, cysts, swelling as a result of infections like meningitis, and other reasons.

Many babies born with spina bifida develop hydrocephalus as well. Here's where the hospital comes in. There are two surgical procedures currently available to treat hydrocephalus. The first is the ETV (endoscopic third ventriculostomy), in which the surgeon uses an endoscope to create a small hole on the bottom of the third ventricle to allow the CSF to drain. This has the highest success rate and requires less maintenance. However, an ETV does not work with all cases.

The second option is to insert a shunt. Basically, a system of tubes with a valve is inserted into the right lateral ventricle, travels out of the brain between the child's skull and skin down into the abdominal cavity, where the CSF can drain. Other types of shunts may empty into the heart or the lungs, but CURE mostly uses VP (ventriculo-peritoneal) shunts.

After the ETV or the shunt is placed, the CSF begins to drain, sometimes resulting in a large valley on the child's head. Eventually, this soft spot will close on its own, though it is at a very slow rate and the sides may overlap. However, the head size generally does not change, because the skull has formed as such, and bones do not change shape easily.

That is hydrocephalus in a nutshell. I am so thankful to be at a place that can repair these babies' heads and lives and give them hope.

further reading: www.hydroassoc.org, www.ifglobal.org/hydrocephalus

This baby looked a lot happier before this picture! You can see that his skull is slightly malformed. The surgeons were able to perform an ETV on him (you can just barely see the bandage on the top right section of his head).

Week of February 12

I apologize (again!) for the flurry of mass emails over the past few days. I'm trying to catch up with everything and move forward so everyone can be caught up.

Pictures from the month of January: http://enc.facebook.com/album.php?aid=2005189&l=0f7a1&id=149000028


I’m writing this journal on a Thursday during the beginning of our eight-hour trek from Mbarara to Mbale. I don’t really know what to think. I’ll let myself get comfortable in this setting, get used to the trash on the streets and dust that covers everything and the rags that clothe most of the children. It’s a self-protective measure, in a way. If I let myself feel about these things all the time, I’d be so depressed. But is this any better? I don’t think so.

I’m typing on a several-hundred dollar computer, listening to iPod music, and wearing $40-dollar shoes. And behind me on our little convertible ambulance/bus is a baby who is just hanging on to that precious thread we call life. A weak, gasping cry follows every shallow breath. I’m getting overwhelmed just listening to it. It’s strange; I’m listening to a song that says, “Once upon a time … we believed in miracles…” Not that I don’t believe in miracles, but it’s rather sobering. I hope this baby makes it all the way to Mbale.

This week I’ve been away from Mbale since Saturday. I traveled to Kampala for Dr. Rita’s wedding on Saturday. I sat on the end of a row, and when we went up front to give the offering, I completely forgot about my purse at my seat. Needless to say, my wallet was stolen during those three minutes I was away from it. Mom and Dad were wonderful and cancelled my two debit cards right away, and Charles (whom I’m starting to call “Dad”) let me stay with their family for the night and gave me enough money to cover me for the rest of the week.

On Sunday, I traveled to Mukono to visit Greg and the rest of the Uganda Studies Program students. It was fun to be in a college setting again, and I was able to attend four classes on Monday and Tuesday morning. Two of the classes were taught by Americans, and two were taught by Ugandan professors. One of the later classes was East African Politics, and the professor outlined the Statist Theory, which places the blame for Africa’s poor condition on its leaders. The fault does not lie in Western aid and the dependency it creates (as well as the conditions it places on its aid) or in Africa’s unwillingness to move past tradition and on toward modernization and development. There does seem to be a great amount of corruption among leaders here, even in Uganda’s President Museveni. It sounds like he started out as a great leader, but somehow he is still in power 21 years later. Ugandans are still hoping for a peaceful transition of leadership, since this has yet to happen.

I think it’s a mix of the three, though. It would be impossible to pinpoint one cause of such a large-scale failure to provide for people. I’m realizing how much more I need to read about the history and culture.

On Tuesday, we drove to Mbarara, a medical university town in the southwest corner of the country. Wednesday was clinic day, and we saw about thirty patients. There wasn’t too much for me to do, though, because I’m kind of useless when it comes to speaking to the clients. I did play with lots of the babies and worked on putting together the resource book. I feel useless here often, so I like to create jobs for myself in hopes of bettering the hospital somehow in my own way. Charles reminds us that just being with the clients is often useful in itself, but I tend to want to be doing things. I’m guessing there is a balance between just being with the clients and working to get things done.

I’m having a hard time concentrating because we’re passing plains now and I’m trying to type while looking for zebra. I think I’ll look out the window and type at the same time and correct the mistakes later!!

Miriam and I talked about social work again Wednesday night. She has such a vision for social work and her country. She wants to connect with current social work college students to provide them a network of support from practicing social work graduates in hopes of supporting them and given them mentors. Like she’s said before, social work is a developing profession here and is therefore not regulated by a set code of ethics. The NASW-Uganda is developing and will continue to change and grow through the conferences they are planning and dialogue. Charles is interested in starting an MSW program at Uganda Christian University with occasional visiting professors from abroad. I think that would be wonderful. Maybe I’ll come back for a semester. It’d be interesting to see how the foreign professors would be able to adapt to the culture.

And that was my exciting week. Laying in bed on Saturday night, I tried to feel sorry for myself because of my stolen wallet, but all I could feel was overwhelming gratitude and unworthiness at the chance to be in Africa for four months. My heart is still with Latin America, but I think Africa is stealing a different part of it.

Friday, February 16, 2007
I feel like I need to add an addendum to this entry. The baby made it back to Mbale and had a good night last night. Pray that it continues to get better.

Week of February 5

This week, I tried to buckle down and actually get some tangible work done. I’m feeling very comfortable at the hospital and enjoying my coworkers a lot. They’re still so welcoming, nice, and funny. Ugandans have a good sense of humor. (Maybe it’s because they eat things like minnows and meat smothered in fat – they need it!)

I finished gathering questions for the take-home book for the mothers; now I need to find answers to these questions that they will understand! I’ve gathered tons of information from spina bifida and hydrocephalus association websites, so I need to sift through it all and make it understandable.

I’ve tried to be aware of needs that I can help fill. The intake doctors and social workers are constantly explaining hydrocephalus, spina bifida, shunts, and ETVs and drawing pictures to accompany them. I’ve gathered simple diagrams outlining each condition or procedure and will print them out on a two-sided page, have that laminated, and provide each department with a few of these sheets.

Another problem is that the bathrooms are constantly misused by the mothers who are from villages out in the bush. They will stand on the toilet seat (and often miss), will go to the bathroom outside the toilet, or will put bags, diapers, gauze, etc., down the hole because they may be used to pit latrines or holes. To make the mothers aware of the workings of the modern toilet, Aubrey and I found signs online that show how to correctly sit on the toilet and not to stand on it. I spent so much time looking online for a good diaper picture! We wrote instructions in English, and I had staff translate into Luganda, Swahili, Luo, and Ateso.

I also discussed what sections need to go into the orientation video. There are so many rules of which the mothers are unaware; I’m hoping that I can make the video interesting and effective.

Miriam and I spent some time watching videos about hydrocephalus, spina bifida, and CIC (Clean Intermittent Catheterization), since children with spina bifida are most often incontinent. These videos are helpful, but we both agreed that we need to make them more culturally sensitive and relevant to our clients. She’s hoping to use parts of those videos in conjunction with videos we make ourselves. (I just don’t want to take on too many projects!)

After reading and looking at so many pictures of the conditions we treat, I feel that I know a great deal about them, enough so to explain to parents effectively. A few days ago, Miriam was busy doing an intake, so she put me into an office with an English-speaking couple. I could tell right away that they were well off, and this was apparent even in the fact that they could understand my English very well for the most part (what a relief!). The father was an accountant, and the mother works in a hardware store. I recorded their socioeconomic information, asked them where they’d heard of the hospital and if they understood their child’s condition. They did for the most part, and I expanded on the parts they left out. Then came the worst part: telling them they have to pay for the service. What the intake sheet says is,
"Our services are specialized and highly qualitative, hence not free. Well wishers from abroad, especially the USA, have helped cover the biggest part of the bill; we therefore request you to make a financial contribution of shs 750,000 to cover the rest of the bill towards the treatment of your child. How do you hope to meet the bill?"

I tried to pretend that I didn’t hate the fact that I was asking an African family for money and told them the surgery cost shs 750,000 and asked how long they needed to pay. The father said, “I can pay 500,000 now and 250,000 when the baby leaves.” That never happens. So I got extremely lucky for my first real intake. I took part in a few other intakes this week, but it usually ends with Miriam explaining things in their native tongue because it’s too hard for them to understand me. Sometimes Miriam will translate for me, but I feel like that’s a waste of time since she can do it perfectly well by herself. And I certainly don’t want to compromise the quality of service for the clients just because I’m in my practicum!

I’ve been concerned about figuring out case loads, but Charles suggested that when patients come in from Mbale, I make sure to spend time with them, check up on them, help them look for resources, and then do a field visit after they leave. Even though this is not what the social workers do here, it should give me some experience with case loads. I think it will help me focus on and get to know some of the mothers better, because there are usually at least 20 mothers in the ward at any given time, and it is hard to get to know them when there are so many.

Here’s a side note: I barely dodged a baby’s pee yesterday. I don’t think it will be long before a baby pees while I’m holding him. I’m pretty sure that’s inevitable.

Living where we work gets more difficult for Aubrey and me the longer we are here. It’s our home, but people can walk into it anytime without warning, especially our coworkers after hours. Of course, we like them, but sometimes they stay late, and I have work to do and just want to be alone. When Aubrey and I are here by ourselves, we usually are in our rooms relaxing or doing work. We certainly have our times to talk about life, though! It’s nice to have someone here all the time. I think we’re doing a good job of being together a lot but having our own space and times alone. I’m enjoying having her around.

Tomorrow (Saturday) I am going to Kampala for Dr. Rita’s wedding! Then I’m taking a long weekend and traveling to Mukono to be with Greg and the USP students until Tuesday afternoon, when I’ll travel to Mbarara for a clinic until Thursday. So I won’t be home for a week! It should be exciting.

Week of January 29

It still feels like I am settling into my place at CURE. It’s officially been a month now, somehow! While I miss home and school very much, I am happy here. Especially because there is a gecko crawling on the wall as I type. I love accommodating and adapting to the silly little differences like that, or changing my handshake, or having to stick things into the electrical outlet so I can plug in appliances! I can’t say I feel at home in the culture because it is so different, but I am enjoying being a part of it for four months. No driving will scare me when I get back home!
I have been talking with Miriam about differences in social work here in Uganda and in the U.S. As I said before, it seems to be at a different level, though universities are working to improve their programs. Charles would like to start an MSW program at some point, perhaps. Maybe I’ll come back and teach! Ugandan social workers do not operate by our Code of Ethics, but they use the British version, which is adapted from ours. She spends a lot of time on the NASW website, trying to learn as much as she can; she is always reading a social work book or literature about hospitals and disabled children. I hope she gets into Case Western and is able to pay for it. She is wonderful. She truly shows the clients that she cares for them.
Aubrey and I have both been feeling somewhat useless because there are so many barriers to helping clients. For one, we are mzungus, and being white automatically puts us in a different category of opportunity and money. Clients will often ask us to give their children toys, sponsor children’s school fees, or pay for some service. We have been told by Ugandan employees to say that we do not have these things. My first reaction when told this was to balk at lying. But in reading African Friends and Money Matters, I have realized that Ugandans place paramount importance on maintaining relationships to the point that they will lie to avoid conflict. In fact, it is somewhat rude to say, “No.” Therefore, I suppose that lying in this context is excusable. I still don’t like it, but I will donate to organizations in hopes that this is the best way to help the poor.
Another reason Aubrey and I both feel irrelevant to clients at times is the fact that we are young and not mothers. It seems that mothers sometimes look at us and think, “What can they do to help us? It’s not like they can come close to empathizing with our situation.” Speaking with the clients is also difficult. A few speak English fluently, but most do not. I have started asking staff to translate for me so I can communicate better with the mothers. Still, it is frustrating, especially when I have taken time to learn Spanish and it is useless here!
Miriam Ampeire (the social worker) and the other Miriam (the director of the Spiritual Center) have both told us that simply taking time to talk to the clients and hear their situations and hold their babies does great good. Coming from a society and culture that emphasizes efficiency and doing makes it difficult for us to feel like we are being effective. But I think we can find a balance in which we get things done but also slow down to simply be with the mothers and love them.
I focused on several projects this week in hopes of moving forward with them. Charles and Melissa (his wife) have both warned me that getting things done here is quite difficult because of cultural differences. With that in mind, I am trying to take charge of my little projects but include many people so they feel ownership in them and will continue them when I am gone.
I talked to Florence, head of the nursing department, about my booklet idea, and she gave me information on nutrition as well as other ideas. She agreed that a PowerPoint presentation on nutrition would be very useful. Aubrey and I also met with Miriam, the head of the Spiritual Center (yes, names get so confusing!), to learn about spiritual influences on the clients. We were surprised to learn that most of the mothers go to witch doctors, even if they’re Christians, for healing before they will come to the hospital. They believe that the children’s condition is due to a curse and will often blame the mother and the family for failing to do something or doing something to bring on the curse. So not only do the mothers have to care for sick children, they have to take the blame for their child’s sickness.
I grabbed Miriam on Thursday to ask the mothers in the ward about their questions, what they would like to know when they leave, and what would have been helpful to know when they came into the hospital. These answers were extremely helpful in formulating ideas for the booklet as well as the orientation video I’m trying to put together. Aubrey is gathering pictures to better explain the rules to mothers who cannot read (or speak uncommon languages), and I am trying to put together an orientation video so they will be less confused when they come into the hospital. This project is going to be a lot of work as well, but everyone I have talked to about it has agreed that it is needed. I want to be useful!
We visited the epilepsy department to learn what they do in that section of the hospital, since we have spent time in every other department. It was so interesting. The patient had to shave her head so the electrodes could be attached to measure brain activity. The two epilepsy nurses were gone; one was on her honey moon and one was sick, so Richard employed Aubrey and me to help him. Aubrey covered the electrodes in conductive substance, Richard placed them on Amanda’s (the patient) head and covered them with gauze and a special glue, and I cemented the electrodes to her head with a tool that releases oxygen at high pressure. Richard then plugged the different electrodes into different jacks to correctly record her brain activity. The goal is to record three different seizures in a patient in order to analyze abnormal brain activity and pinpoint the regions of the brain causing the epileptic seizures. Quite interesting.
This coming week I hope to make a lot of progress with the book and spend more time with the mothers as well. I am much more comfortable in the ward now and am enjoying getting to know the mothers and playing with their children. I hope to find material online about working with sick children so I can know how to better work with them.

Week of January 22

I apologize for the month-long break in posts. School work and activities have picked up, so I found myself putting off writing longer and longer until the thought of writing an update for the whole month became too overwhelming. So as a compromise, I'm going to post my practicum journal entries for the past month. I hope they will suffice; in the future I'll try to be better about it!

Here are some pictures of my trip to Sipi Falls a few weeks ago: http://enc.facebook.com/album.php?aid=2005116&l=80038&id=149000028

January 22, 2007

At this point, I think my journal reflections are not going to be as long, since things are starting to become routine. Yet at the same time, I know that I will continue to be challenged in ways I do not foresee and surprised by living in Africa.

This week held two large highlights for me. The first was participating in a rally sponsored by Mama Janet Museveni, the president’s wife, to promote faithfulness in marriage as a way to combat the spread of HIV/AIDS. Prior to the march on Tuesday, 300 couples participated in a conference outlining qualities of faithful marriages and how to make sure they happen.

(Here’s a side note: In Uganda, polygamy is actually a fairly common practice. Simply put, it is not a big deal and is even expected in some areas. Faithfulness to one’s wife is not a highly esteemed quality, either. A man could be married to a wife in Mbale and have a girlfriend in Kampala. Some Ugandans will ask even Charles if he has a Kampala girlfriend. It isn’t uncommon for the wife to know about the girlfriend; it is just a fact of life, apparently.)

About fifteen of the CURE staff took a bus to the Mayor’s Municipal building to march in the rally. After following the parade throughout Mbale, the crowd returned to the mayor’s place and listened to several speeches by government personnel and other local leaders, including someone from TASO (The AIDS Support Organization). The Minister of Health spoke as well, outlining tactics to reduce the spread of AIDS. Finally, Mama Janet spoke, giving the last speech of the day. Her love for Uganda is apparent, and her passion for reducing the spread of AIDS has had a profound impact on her country’s health. She was adamant about faithfulness in marriage and even suggested praying together as a way to promote togetherness.

AIDS, sex, and condoms are simply not taboo subjects of conversation here. Everyone is informed by posters, billboards, and the government of these issues and the measures needed to reduce the spread of this disease.

The second highlight of the week was a trip to Kampala on Thursday. Sylvia, the HR director, was invited to participate in a government workshop debating the implementation of the SHI (Social Health Insurance) Bill. The government presented their proposals, and the FUE (Federation of Uganda Employees) gave their reasons for being hesitant of the implementation of such a bill so soon.

It was very interesting to hear the different sides of the argument and realize how little I know about the workings of health insurance, especially in Third World countries. The Ugandan government has researched the SHI of Tanzania, Kenya, and other countries in similar situations to decide the best route to affordable health insurance for all citizens. The plan, however, is to take 4% of each employee’s gross salary for the SHI and require the employer to pay another 4%. In the end, this could cost employers a lot, since they have to pay the required 4% in addition to possibly paying the employee more to make up for the employee’s 4% cost. The FUE argued that Uganda cannot afford this blow in the private business sector at this point; there is no reason to further cripple an already struggling market.

The government officials and those heading up the SHI bill listened to the concerns of the FUE and agreed to hold another forum to discuss the differences and try to come to a “win-win situation,” as they said. It seemed quite democratic.

At the hospital this week, I made sure to visit more of the departments to better understand all its workings. I sat with Dr. Rita, who does initial diagnoses with the patients, and she explained hydrocephalus and spina bifida as well as the procedures to correct these problems. I think I’m finally starting to understand these well. It’s actually quite interesting.

As I continue to decide my place here and what I need to be doing with my practicum, I am realizing how different social work in Uganda is from that of the U.S. As Sylvia mentioned this week, social services in Uganda are in their infant stages. I am continuing to discuss these differences with the social workers here and trying to decide how applicable the Code of Ethics is here. I certainly don’t want to discount it, but a lot of it just doesn’t fit here. Fighting to adhere to the Code of Ethics would be a futile battle. But I will continue to dialogue with Charles about it as well as with the social workers, and hopefully we will come to some conclusion.