Christmas in Durban

So happy to see water and the beach.

I spent Christmas weekend at the beach in Durban, South Africa.  We drove to Joburg and then flew the 1 hr from Joburg to Durban.  Flying outside the United States is so much less painful!  You can bring liquids, leave your shoes on, they deboard the planes through the front and the back doors, etc!  Our first day in Durban was cloudy and misty so we toured the city.  Being that it was Christmas, none of the museums were open.  But we did manage to find a statue of Ghandi.....

Then it was off to the beach.  There were several people who had created amazing sand sculptures.  They said on average they spend 6 hours or more making the sculptures.  They leave them over night but they are often distroyed by the next day and need to be recreated.  Interesting way to make a living.

We got really into the jump shots....  

After several hours of exploring we were ready to head back to our hotel in a suburb of Durban.  We took two adventurous combi rides.  Combis are the public transportation system here; they are minivans that travel around the city on specified routes.  The first one was in a supped up combi complete with even a TV blaring a cartoon.  The second was not as nice and quite cramped but got us where we needed to go.

The second combi ride was more cramped than the first...

The following day was gorgeous, a perfect beach day. We went to the beach in Umhlanga, the suburb where we were staying.  It was a totally different beach experience from the beach in Durban.  The after effects of apartheid are still very present.  On the beach in Durban there were very few white people, no umbrellas to rent, less shops, more garbage and no pretty pier.  Umhlanga was the opposite.  It was a stark reminder that only 19 years is not enough time to overcome years of oppression.

Gelane and me on the pier on the beach at Umlhanga

Right on the edge

The next day we made our way back to Joburg.  Since we arrived in the morning we figured we would make a trip to the Apartheid Museum.

It is an incredibly well done museum that should be part of everyone's visit to South Africa!  No pictures are allowed to be taken inside, so you will just have to take my word for it.  The museum starts with each person being handed a ticket that says either "White" or "Non-White" and then you have to enter through the entrance that corresponds to what is written on your card.  As you make your way through the entrance you see replicas of the passcards which everyone was forced to carry.  While both whites and blacks were supposed to carry the cards, only blacks were ever sent to jail for not carrying them (even if they were only going to the corner store for a minute).  The museum led me through a history of South Africa, then the creation and abolition of apartheid.  There was also a special exhibit on Nelson Mandela.  So much to read and see that I spent almost 4 hours in the museum and easily could have spent more.  It made me appreciate just how far South Africa has come in the 19 years since the end of apartheid, even though there is still a LONG way to go.

"To be free is not merely to cast of one's chains,

but to live in a way that respects and enhances the freedom of others" - Nelson Mandela

This quote is on the entry wall of the museum.  A statement that was truly exemplified by Nelson Mandela who easily could have tried to retaliate against those who had imprisoned him for much of his life; but instead he worked towards creating a country where everyone was equal.
It gives us all something to strive for as we approach the new year... 

UNFAIR

Earlier this week I was asked to consult on a patient on the pediatric inpatient ward in Serowe.  I was told that the patient was a 14 year old with heart failure.  As I walked to the ward with my fellow PAC doctor (Steph) we wondered allowed what we would be able to offer the patient given our limited experience managing heart failure (after all it is not a common problem in children and not one that general pediatricians routinely manage.)  When I started looking through the chart I began to think that the story sounded all too familiar.  The patient (we'll call him Tefo) had just been diagnosed with HIV at the late age of 14, he was an orphan, and had just been started on antiretrovirals (ARVs) despite a high CD4 count.  Steph wondered why he had been started on treatment. (In Botswana, when a patient has a CD4 count >250 there has to be another reason for starting ARVs - like an opportunistic infection or failure to grow, etc.)  And then all of the pieces fell together, Tefo was the same child I had seen just 2 months earlier with his aunt in one of the local clinics (see last blog about disclosure).  I had started him on ARVs because at 14 he was the height and weight of an eight year old.  As soon as I saw him I knew it was him.  He had been admitted to the hospital for chest pains and shortness of breath about 1 week earlier and it was discovered that he had an aortic aneurysm and severe aortic regurgitation.  By the time we saw him he was stable and was actually walking around the ward.   However, his heart sounded nothing like it had just 2 mths earlier, which means that his heart problems were acute.  It is possible that the aneurysm has been there for some time, but has suddenly grown larger causing him to be symptomatic.  We are still unsure what caused an aneurysm in the first place, could it be congenital?  Could he have Marfan's syndrome?  What would Marfan's Syndrome look like in a child who is so stunted (given that people with Marfan's are usually very tall)?  We don't have genetic testing available here and the bottom line is that he needs to go to South Africa for heart surgery, since we don't do heart surgery here either.  The adult cardiologist who visits Serowe a few times a month, and had been the one to perform the echo and diagnosis the aneurysm, is working on getting an MRI to better visualize the aneurysm and transfer him to South Africa.  There was really nothing more that we could suggest, but I was just struck by the unbelievable unfairness of it all.  It is not enough that Tefo is an orphan (though he has a loving aunt, she also has her own children), he also had to be diagnosed with HIV, and then he has to have heart surgery as well.  And yet there he was smiling at us as we asked him to do all sorts of crazy things in our quest to see if he might meet clinical criteria for Marfan's.  His strength gave me hope that he will make it through all of these challenges despite the hand that he was dealt in life.

There have been changes in the grants that we have gotten and in the requests for our time from the Ministry of Health; so I will now be spending about half of my time in Gabarone and half or so in Serowe.  It will be a good chance for us to see how much the medical officers we have mentored have learned and it will be an opportunity for me to become involved with some other projects which will be interesting.  It also means more consistent access to internet so I will try to update the blog more often ;)

I have had some time to knit recently and since this blog has no pictures, here are two of my recently completed baby sweaters (since many people I know are having babies and they are fun and cute to knit).  Thanks Mom for blocking and sewing the buttons on the first one ;) They are both the same pattern (the sideways sock yarn baby sweater), which is my new favorite baby sweater pattern (for now). It is excellent because there are really no seams so when you are done you are done! This is great since my least favorite part of knitting is sewing it together at the end.

Disclosure

It's World AIDS DAY! That fact did not mean that today was different here than any other day; since it is something that we deal with everyday. But it is good that people elsewhere are maybe acknowledging the problem today. There have definitely been many changes for the better in regards to HIV and AIDS in the last 10 years, but we still have a long way to go. And we have challenges today that we could not really imagine having 10 years ago. One of the major challenges is the teenagers and young adults. Ten years ago children who were born with HIV in Africa did not make it to their teenage years. Today, with the increased availability of anti-retrovirals, their numbers are raising steadily (as I have mentioned before). This is a wonderful thing - all these children who would not have lived are surviving and thriving. However, as if being a teenager was not hard enough, they find out that they have a lifelong illness that requires lifelong daily medication! How they discover this information is critical to how they will be able to process what they hear and can have an impact on the success of their treatment. Many of these children have been taking medications their entire lives, but in most cases no one has given them any reason to take the medication other than "because I told you to" or "you are sick" (which if they are taking the medications properly they often feel perfectly healthy). Many begin to question why they should take medications when in fact they feel healthy.

Baylor has developed a stepwise process of disclosure so that the children are not lied to and the process is begun at a very early age. It comes with a flipchart of pictures and uses the analogy of soldiers and bad guy to explain what HIV is. The name HIV is not used until children are ready which can be anywhere from 9-14 or so, depending on their development. It only takes a few mins to explain this analogy to children and then the idea is refreshed at each visit and new concepts are added on. However it does typically require someone who speaks Setswana and does take an extra 3 or so mins. In many of the busy local clinics patients are seen by doctors who do not speak Setswana, there are no designated translators, and often patients spend a total of 5 mins with the doctor. All of these are huge barriers to disclosure and many of the medical officers feel that it is the caregiver's job to tell the children anyway. The caregivers often have no idea how to go about telling children and many have a lot of guilt over giving their children HIV. As a result, most of the children at these clinics have no idea why they take the medications or will say "because I am sick." I spend a fair amount of my time trying to explain what is really going on in a way that they can understand (that is after I have tracked down a translator!)

Here are two recent examples.

I was waiting at one of the local clinics for transportation to a clinic 60 kms from Serowe, when one the nurses approached me and asked if a patient (who had been referred from another clinic where they do not dispense ARVs) was eligible for ARVs. The patient was a 14 yr old boy who was living with his aunt. He had been sick a few times during his life and recently had had chronic diarrhea. His mother had died when he was young (his aunt assumed from AIDS, though the mother had never been diagnosed). The aunt had brought him to the local clinic for an HIV test when the diarrhea did not resolve after a few weeks. I went to see the child and his aunt. He looked about 8 years old, he was severely stunted and underweight (a common problem in children with untreated HIV). He was very quiet. We talked for awhile about his history; I examined him, and ordered the lab tests we would need before starting medications. It is quite rare for children to live 14 years with HIV without being very ill. But it is possible that he had acquired it slightly later in life through breastfeeding (as those were the days before formula was available to mothers who were HIV positive). We talked to him about whether he had ever had sex (which he denied) and whether anyone had ever made him do anything he did not want to do – to attempt to ensure that he had not gotten HIV from abuse. Finally I asked (with the help of the Setswana speaking nurse) what he knew about why he was here. He said that he only knew he was sick, but had not been told anything else (his aunt confirmed this with a nod of her aunt and looked down - I think she just had no idea how to tell him). So we got out the flipchart and told him the story of the soldiers (CD4 cells) who protect the body and the bad guy who is trying to attack them. We explained that with medication to protect his soldiers and put his bad guy to sleep, he would live a long life and could do anything he wanted to do. At the end I asked if he wanted to know the name of the bad guy. He nodded. "It's called HIV." His aunt sitting next to him on the couch began to cry silently looking straight ahead so that he wouldn't see.
"What do you know about HIV?"
"That there is no cure"
"You're right. For now there is no cure, but we hope that someday there will be. Until that day if you take medications every day you will remain healthy and you can play football, go to school, etc."
He nodded. We talked for a few more minutes about how things were different today than they had been many years ago when he had gotten HIV - now that we had medications to fight it. His aunt secretly wiped her tears and looked a bit relieved that she had not been the one who had had to tell him.

A few weeks later I witnessed disclosure how it should be. I was in Mahalapye seeing a 5 year old with one of the nurse prescribers. He was thriving - growing well, about to start school in Jan and clearly a very smart and happy child. Without my asking, she took out the flipchart and began to explain, with great animation, about the soldiers of the body. When the children are very little we only tell them that they take the medications to keep the soldiers of the body strong and we add to the story each time. The little boy listened intently and answered her questions correctly. At the end I gave him a sticker which he put right in the middle of his forehead. He gave us a huge smile and headed out with his grandfather. I hope that when he reaches 14 he will remain the happy, smart, and confident child he is today.