Saturday, June 7, 2008

Ready to get depressed?

Hi everyone, its Michelle. Andy asked me to take the blog off his hands for a night. Unfortunately for you, most of my material is not as uplifting as his. However, it might be kind of interesting to some. So, I just thought I'd share with you stories about 2 kids that have been on my mind lately...
Before I start, Jude got his first haircut since birth today. He looks completely different (to me) and I think people will finally stop asking if he's a girl. We don't have a camera battery yet (its flying over with Matt and Cathy this week) so we'll post pictures when that arrives. Actually, for those of you who remember Jacob at that age, I think you'll get a kick out of the resemblence.
Anyway, just wanted to let you know about a couple of patients. One of them is a 16 year old guy who is quite sick, and to whom the title refers. Sadly, I think his story is a really scary prelude to what might be the near future for a lot of the kids we take care of. He is 16 now, infected through birth from his mother who died 7years ago. After that, he kind of bounced around among family members, with difficulty finding someone to take good care of him consistently. When you take antiretroviral medications for HIV (sometimes called ARVs or HAART), it is absolutely critical that you take the meds essentially perfectly. If you take the meds any less than 95% of the time, you risk your virus learning to become resistant to the meds, and that necessitates a change in your regimen. So for a month, that works out to being able to miss ONE dose. No other disease requires this level of adherence. Its actually amazing to me that so MANY of our patients are able to do this so well. If you can think, though, of the last time you had to take antibiotics or give them to your kid, you can imagine how difficult this would be.
Anyhow, if your virus becomes resistant, you have to change the regimen. There are a finite number of drugs available, and in Botswana (and in Africa) the options are less than the US. For these kids who have had suboptimal medication administration by family members, the options are starting to run out. This is the case with this boy, K. He has been through 4 different combinations of meds. Right now, we have him on 4 different meds(rather than 3) in the only reasonable, available combination left. It isn't working, though. He is 16 yrs old, he's the height of Jacob when he was about 9 yrs old (I think I've talked before about the capability of this virus to seriously stunt these kids' growth), and currently, K weighs 20 kg (about 44 lbs). He was recently admitted to the hospital because he required a blood transfusion. In the hospital here, once you've turned 13, you are now an adult. So I would see him on the male medical ward - this very tiny guy in a bed amongst 14 coughing adult men. He still had enough energy to talk me into buying him some lunch, though. He didn't like what they were serving from the kitchen. He is an easy patient for me, because his English is quite good. However, that also means that he can articulate some really depressing things. I saw him a few months back when it was becoming clear that this disease is probably going to kill him. It appeared that he was taking the meds, but in spite of that his CD4 cell count (the disease fighting cells affected by HIV; less than 200 is full blown AIDS, he's currently at 154) was going down and the amount of virus in his blood was going up. I asked him what he was thinking, and he just said "I'm really frightened."
I guess I bring this up because I'm afraid this is where so many of our kids are heading. Currently, the worldwide standard of care is to try and diagnose babies as early as possible, and if you find a baby is infected and is less than 12 months of age, you automatically start HAART. Now, this kid is looking at a lifetime of meds, and can fail once, maybe twice at most. I went to a meeting for government health officials last week, a presentation on Botswana's success in testing infants. They are probably the most successful southern African country to implement many of the programs that address HIV. Some of the talk was about goals for prevention of mother-to-child transmission. There was talk about cost-benefit ratios, etc, which IS absolutely necessary in public health. However, I at least was able to share K's story in an appeal to ignore the "acceptable" 1% transmission and try to reduce transmission to zero, so we can focus on the group of kids we already know are affected.
The second kid is one who is the poster child for the family you wish every kid had. This boy, O, is 8 years old and is being cared for by his 22 year old brother. Their parents also passed away and O was briefly in the care of his grandmother, who by all accounts is a pretty miserable person (very atypical of most of the grannies here, who are doing a huge amount of mothering now that so many moms have passed away). I don't know if you've gotten the drift from Andy's Gabane posts, but jobs are few and far between here. A lot of people go to South Africa, work and send the money back. O's brother had a good job at a zoo near Johannesburg, and was enjoying his life. Then I guess he came back for a visit and saw what was happening. He then quit the job, got a place in Gaborone, and started raising O. He has an interest in graphic design and was printing T-shirts and selling them at the local mall. I guess that wasn't cutting it, because now he gives the meds, goes to a job working 9 pm to 7 am every night pumping gas, comes home, gives the meds, gets O to school, and then works on the T-shirts. I asked him how long he was planning on taking care of O. A lot of child care arrangements here are fluid - kids come in and seem to be staying with a different family member every month. So it was very surprising when he said "until he's grown." You know, I realize that people all over the world do very self-sacrificing things to raise their kids and help their families. But sometimes it is extremely affecting when the person is sitting right in front of you and you can see how much they've given up to do the right thing. A lot of these adult children who have now been saddled with their younger siblings have a lot of anger and resentment, and rightfully so. I had another 25 yr old brother of a 12 yr old patient tell me point blank that he never asked to be a father and he was going to live his own life. So O's brother is really impressive. I think we're going to come back with a whole bunch of T-shirts.
All for now, thanks for indulging me. All of these kids are great, but some are really hard to stop thinking about...