I have a question...and I don't think this has been answered yet. In the United States, I'm guessing, kids born with HIV are treated ASAP, and as you said, can go on and live a normal life with pretty much normal life expectancy (afterall it may never turn into AIDS). My question is though, in Eastern Europe, Russia or even Africa. Are these kids medically treated as soon as possible? Are they even treated? If so, how WELL are they being medically treated? If they do start treatment later on in life, do they have a greated risk of their HIV turning into AIDS? Have you found many differences in the medical treatement your child is receiving here vs. in his/her home country? These are questions I've always wondered!
- I don't have any solid answers on this. But I'm pretty sure this goes for any orphanage overseas: Yes, the children ARE treated. However the resources we have here are just not available in most other countries. Our doctor said in his 20+ years of treating HIV patients he had never seen such good blood results in a child adopted from overseas. He was quite shocked actually. (The virus was low to the point of being undetectable). He said this indicated excellent care on the part of the orphanage, which makes us so grateful. The doctor made a couple of minor changes to the medications and the dosages but otherwise he was really happy with what the orphanage had already been doing. I do believe kids are generally treated shortly after being diagnosed. Our child had been receiving treatment since, I believe 2 weeks of age.
How do you deal with disclosure? Isn't it best to keep your child's HIV status confidential?
This is by far THE hardest part about HIV adoption! Who do you trust with this information, if anybody?
-On the one hand it's nobody's business, and on the other hand you KNOW people would rather know so they can be cautious.
-On one hand, it is your child's personal story you should protect. On the other hand there are many other HIV+ children needing families, and you MUST advocate for them.
-On one hand, friends might ostracize your family if they knew. On the other hand, who needs those kinds of friends anyway?
-On one hand, you can never 'untell' your secret once it is out there. On the other hand isn't the secretiveness and shame what perpetuates the stigma in the first place?
We have found that other HIV adoptive families either remain totally 100% secretive about the HIV, not even telling family or close friends, or they choose to openly educate people about HIV and HIV adoption. We have also found that there can't really be a middle of the road here. It is very difficult to just tell a few close family members and friends, and then trust that people won't be telling other people or sending anonymous letters to church or school, or questioning you at family reunions whether you have told so-and-so or not. We tried the middle of the road approach and feel much more peace with being more open about it. It is a very personal decision whether to be open about HIV or not. I don't think there is really a wrong way to handle it, as long as the child is treated with dignity and respect. After all HIV in children is really NOTHING to be ashamed of.
You should also know that according to the health department we are not required by law to tell ANYBODY, even doctors and dentists (although it is encouraged for obvious reasons). Technically all hospitals, clinics, schools, day cares, etc. should be using universal precautions anyway, thus the reason why it is not mandatory to disclose. The only time you must disclose by law is when you are putting another person at risk knowingly. A little surprising, huh? We have chosen to disclose to church and school, mostly because we didn't want them finding out through someone else and then freaking out on us.
So far friends and family members have exceeded our expectations and have been surprisingly and graciously, KIND, loving and accepting of our family, all of us! Thank you Jesus for a big prayer answered as we took a giant step of faith. Thank you friends and family!
As I'm sure you've noticed I am not ready to go all out and name the HIV+ positive family member. I believe we will get there in time but I still feel somewhat protective in this way. If someone has a problem with "our" HIV then they will have a problem with the whole family and not one innocent member of it.
General HIV maintenance and daily precautions:
This is really the simpler part of HIV adoption, as compared to the previous question.
1. Although it is so tempting to do so (kidding!) there is absolutely no sharing of razors and toothbrushes allowed. I keep all razors and toothbrushes up high out of the reach of little fingers, just to be on the safe side. I do not know if HIV has actually been spread this way, but we don't want to be the first, and this is what the doctor ordered.
2. No touching of blood. Again, do we really need this rule? When there is blood (and there has been a couple of times), only Mom can clean it up. Of course this doesn't scare me at all, just get it cleaned up and disposed of ASAP just like I would any of my children. It's a good idea to wear gloves (although some argue this isn't even necessary) and keep a first aide kit in the car and in several places around the house.
3. Regular doctor's appointments for IV blood draws to check HIV levels and medication levels. We do this every three months. Soon it will only be every six months.
4. Three medications are given twice a day. They are Kaletra, Epivir, and Zidovir. These are taken with food and must be on time, within an hour of scheduled dose. I have my phone alarm set to go off every day at 8am and 8pm. I was worried I would be forgetful about this, but I have really surprised myself and have done an excellent job, if I do say so myself!
5. Technically an HIV infected individual is more at risk for infections due to a lower immunity. Therefore you should be more on the cautious side when it comes to vaccinations, fevers, etc. Your doctor will help you know if and when to vaccinate, if and when to bring your child in vs. letting a fever run its course. So far this has not been an issue for us, since we are ALL healthy!
Later on we will have to worry about dating and marriage, but that doesn't scare me either. We will teach and encourage abstinence until marriage for ALL of our children. John and I were able to pull this off successfully and we are thankful to be able to be an example to our kids in this way. It is a gift to our marriage and neither of us ever EVER regretted waiting!
So now that you are well informed about the beauty and joy of HIV adoption, please go look at the wonderful children who are waiting for families! My prayer is that someone's heart has been opened to the great need and that at least one child will find a home through these blog posts. PLEASE just take a look.......and pray, donate, or better yet ADOPT. They need families, every one of them. Maybe, just maybe, one of them will be yours!!