It is hard to believe how fast our children are growing up. It has become apparent that quite a large number of our inhabitants do not want to be treated as children anymore, and are well in to adolescence. We have long been aware that the issues of social responsibility and sex education would need to be handled with care and sensitivity. The Baan Gerda team discussed this at length and thought we had better get some expert advice.
Thailand is fortunate to have a strong network of NGOs which deal with many of the aspects affecting people with HIV. Our doctor was able to refer us to a group specialising in HIV youth, particularly dealing with stigma, education and social problems. They were willing to embark on a programme of what they euphemistically refer to as ‘life skills’. It was recommended that we took the children out of their normal environment and take part in 3 day workshop. About 25 of our young ladies and gentlemen took part in an experience which was quite an eye-opener for the staff.
Of course the basics were covered, birds, bees and so on, but what was surprising was how our young people responded to the activities relating to HIV. When asked the question “is it ok for people with HIV to have babies?” we were proud to hear the girl’s group respond with “it is fine as long as they have the means to care for the child”. We try and instil a sense of responsibility into our children and it is rewarding to observe them respond so maturely.
By then end of the weekend we were confident that most of them had a good understanding not only of their social responsibilities, but the various routes of HIV infection, the different types of contraception and the risks of mother to child transmission of HIV. We will augment this programme with others in the following months.
When you look at most of the kids at BaanGerda, it would be easy to believe that they feel as healthy as their peers living in the community. And for many this is indeed the case. However, what most people don’t understand about HIV treatment is that it is can be aggressive to the body and many people, both children and adults, have problems adjusting to their medication. In fact, the majority of our kids have experienced side effects from the drugs and this is just one of the things we need to monitor whilst caring for the residents of BaanGerda.
There are many degrees of side effects which can occur very early on in treatment, or appear after several months or even years. Most side effects experienced from ARVs are quite mild, and often will resolve themselves. Headache, skin rash, fatigue or diarrhoea are common examples. Usually the symptoms are noticed in the early stages of treatment, or after a change in drug regimen.
Other side effects are more serious and will require swapping one or more drugs after consultation with a specialist. Anaemia is common with one drug, neuropathy (numbness, usually in the hands and feet) from another. High cholesterol and lipodystrophy (where body fat is transferred from one part of the body to another) are also frequently observed. However some drug reactions are severe and can be fatal if not recognised in time. Usually it is impossible to tell in advance who will suffer these side effects. For this reason, the staff at BaanGerda need to keep a careful watch over any children who have recently had a change in their medication, and the house parents are also instructed to look out for any suspicious symptoms.
It is a sad fact of life that many of our children have experienced such poor health in the past that they will tolerate considerable discomfort before complaining. Whilst we try to make our children feel as normal as possible, it is our responsibility to teach them to recognise dangerous symptoms which may arise from drug side effects.
At BaanGerda we are aware that the role on nutrition is just one of many important factors influencing the development of our children. Visitors to the village may have noticed that some of the children seem very small in comparison to other children of the same age. The HIV virus not only attacks the body’s immune system but can also affect the physical and mental development of a child.
It is believed that a healthy HIV infected child requires approximately 10% more food intake than a non-infected child. A child with clinical symptoms of HIV (opportunistic infections / HIV wasting etc.) however requires up to 50% more food. It is our responsibility to ensure that our children get sufficient nutrition to ensure they develop like normal children. We find this now takes up a larger proportion of our monthly budget .
We are delighted that a team of nutritionists from the Thai Red Cross HIV Research Centre and Mahidol University in Bangkok have decided to undertake a study of the role of nutrition in HIV children at BaanGerda. After two preliminary visits to assess the height, weight and food intake of the children, the team are now working on various approaches to ensure that the nutritional needs of our kids are being fulfilled.
BaanGerda is an ideal location for such a study because we have records about the physical development of our children going back several years as well as clinical data for each child. The team will be working with our cooks to adapt menus for healthy high-calorie foods; our parents to encourage their involvement in their children’s eating habits; and our kids to teach them the importance of eating healthy food.
We will be making regular reports on the progress of the study, but for now our children seem very happy to know that one of the team’s recommendations is to eat plenty of ice cream and milkshakes!
It was with an air of apprehension that I prepared a slide show last week describing some of our experiences setting up Baan Gerda. Our paediatrician Dr Jintanat had suggested that BaanGerda might be an interesting case-study for visitors from all over Asia working with an organisation called PLAN Asia. PLAN is reviewing its strategy with regards HIV and in so doing set up a 5 day workshop. The goal was to strengthen the HIV response in the region, especially among children and young people; ultimately they wanted to set up a regional strategy.
BaanGerda was the first port of call in their workshop. I was worried, partly because I have never had to do a talk to 25 strangers before and couldn’t believe that I knew anything that they would be interested in. I was also concerned because the last seminar at BaanGerda – at which I was not present – ended in such a strong conflict of opinions, that it was important this one succeeded and so it did. Even Karl agrees.
The participants came from a range of backgrounds: economists, programme managers, doctors, other health personnel and so on from all over South and South East Asia. Their range of knowledge was broad, but what united them was their interest in our experiences with treating HIV children here in Thailand.
I gave a half hour talk, with slides, talking about the challenges we have faced, the solutions we have sought and the lessons we have learned at Baan Gerda from a social and medical viewpoint. Dr Jintanat followed with an excellent presentation of the clinical issues of paediatric HIV treatment, which I hope she will share here too. Much to our relief, no one fell asleep and instead, we had a long and animated discussion period. We realised that not only have we knowledge to share, but that there are people in a position of creating change who want to hear it. We look forward to seeing the final results of PLAN’s workshop soon.
When Ginge arrived in Thailand in 2000, she had to idea what lay in front of her. A visit to Wat Pra Baat Nam Phu Hospice prompted her to stay as a resident and volunteer for a short time. It was here that she first met Karl when they argued over the fate of a very sick HIV+ baby of 18 months. After a period back in England, Ginge returned to volunteer at BaanGerda where she stayed for 18 months.
At that time, BaanGerda was little more than a muddy field and a couple of houses. The life-saving ARV medicine was not initially available and it was a testing and emotional time for everyone involved. Ginge worked closely with Dr Jintanat Ananworanich to provide essential medical support to the children. The end of 2001 marked a turning point for BaanGerda when the children started to receive the ARV medicine. The community became a place to live, not to die.
Ginge is back in Thailand for her annual visit to BaanGerda, and she will be speaking at a seminar for 20 doctors on November 19th.
What made you volunteer?
There was no one there! Because someone had to!
The child that Karl and I had originally argued about when we first met at the hospice died a few weeks before I returned to Thailand. I knew that this child required medical attention that was not available to her through the normal channels. No one wanted to help AIDS babies at that time. It upset me terribly that we lost her, but it helped put things into perspective: there were lots and lots more who would suffer the same fate if we didn’t do something.
What were some of the biggest challenges?
It was 2001, there was no telephone line, there was no internet, there was a very intermittent mobile phone signal, there was no-one who spoke English. It was a very isolated existence. Sometimes the isolation was hard and lonely, but mostly it was great to be doing something that I knew was worthwhile. I also had many spare hours to read up about HIV treatment, paediatrics etc., and I suppose it was the start of the rest of my life (I’m now doing a PhD about paediatric HIV health policy in Thailand). We had some very tricky times, I was suddenly the manager of a project in a field of which I had no prior experience. There was plenty of scope for challenges. HIV was far more stigmatized then and we would get weekly visits of people coming to stare at the ‘poor AIDS children’ asking questions like ‘can you catch AIDS by touching them?’
Finding suitable parents was much more difficult than expected, sometimes even agonizing. We’ve had to deal with hot-tempered mothers throwing soup at each other, and at one time an alcoholic father. We learnt much from these experiences and acted accordingly. We had no fixed rules at the beginning and the time I spent there can be considered as a learning and preparation for an ongoing project.