HIV

[nervouslurker]

Obviously, I'm right at the beginning, but I'm the type which reads up on everything before, and I'm overthinking prematurely.

Watching all the TV programs mentioned, and reading this forum avidly! I'm especially interested in matching criteria just now, as it's one of the first questions I was asked 'what sort of child are you looking for?' (Which made me feel like I was in John Lewis discussing hoovers, but I understand they ask to prioritise.)

I said I wouldn't be afraid to take a child with HIV (among other things), as on reflection, I think I'd find that easier than many of the other things. I've been surprised watching the TV programs that HIV appears to be an absolute 'no' rather than a 'depends' for most people, and was wondering if there was something to consider that I'd missed? I've done a search to see if adopting an HIV positive child has been discussed, but can't find much (other than some posters displaying some frankly scary ignorance in one AIBU thread.)

What have I missed? Would looked after children not be taking anti-retrovirals?

[fledtoscotland]

We too are at the beginning of our adoption journey. HIV/Hep B/Hep C are total no's as I have to protect BC as much as anything. Antivirals will of course help the childs health but won't prevent the infection spreading if blood to blood contact is made. I don't want to create a barrier between BC & AC so by saying no to those specific medical conditions in trying to put any child in our home on an equal footing. Apologies about my clumsy explanation but that was something the SW asked today regarding additional needs. We are open to discussion on pretty much everything else.

[nervouslurker]

Of course anti-retrovirals stop the virus spreading! If the viral load is low enough, the chance of spread is very low.

Hep B I can vaccinate BC against, I'm already vaccinated, so would also consider if right.

I would need to ensure had been taking anti-retrovirals to ensure a very very low viral load, but then it's no different to say asthma meds, surely?

[nervouslurker]

And when I say very low, I mean virtually nil if viral load is undetectable, as it commonly is on therapy.

I didn't know if this was the only fear, or if there was another reason I'd missed, as even the SW appeared surprise that BBVs was probably a yes from me.

[fledtoscotland]

I understand what you are saying. DH are in agreement re BBV probably because we both work in healthcare environments and have it drummed into us about the severity of blood splashes/ needle stick injuries etc. although the viral load is negligible it's still a risk. Yes you can vaccinate against hep b (we both are) but I don't overly want to vaccinate DC unnecessarily. There isn't a vaccine for hep C.

I suppose everyone has their line in the sand. We would consider most other medical conditions (FAS etc)

[nervouslurker]

Oh, yes, I know that. (I wouldn't consider I could be the best mum for a child with FAS, or ASD.) I also work in a healthcare setting, which is why I think I feel comfortable about the risks. (Everyone's different!)

It was the SW's surprise as well, that made me wonder if I'd missed something about compliance with ARVs in foster care, or something?

[Devora]

I would have been happy to adopt a child with HIV too.

[fledtoscotland]

I'm not aware of any reason why a child in FC wouldn't get medication. SW today seemed surprised we weren't wanting a baby. I had horrendous pregnancies and complicated medical births which left me struggling with newborns. I said I hadn't overly enjoyed the newborn stage for this reason but she says it is different for AC so I should consider from birth. I thought they were finding older children difficult to place where she appeared to be selling the idea of a baby

[Lilka]

I said yes to HIV, though it's very rare and I never saw any profiles of children who had it. I think it's much more of a consideration in international adoption from certain countries, where it's much more common and you could quite easily find a waiting child with HIV

It's a puny virus really, indredibly difficult to catch unless you are needle sharing or having unprotected sex, and there's a high viral load. I don't believe there ever has been a documented case of transmission in the home through a child getting a normal injury/nosebleed etc. So for me, either me or my other children contracting HIV would not even remotely be on the radar, I just count it as basically impossible. Heck, with medication, I've heard of couples having lots of unprotected sex so they can have babies, and that didn't result in the disease being contracted because the virus level was too low. And in the next to zero likelihood I did get it, I think I should be basically okay.

And for the child, medication could give them a nearly or totally normal life span, meds are easily managed for a smaller child, more easily managed than Diabetes for instance

So yes, I feel completely comfortable with HIV as an illness. But I do think the stigma stops people, and the fear of transmission even when it's really almost impossible

That said it's not quite that simple and you need to think about other things before you can say confidently yes to HIV (but the general principle of thid applies to any relevent medical condition, not just HIV):

You need to be comfortable talking about it with your child, including talking to them about stigma, the importance of taking the medication, safe sex, and being there for them if they want to talk about anything, from fears about it, to encountering stigma and so on and on. Knowing about their own condition can be psychologically difficult for a child, and it will be difficult encountering stigma etc...parents need to be comfortable talking about all these things

You need to be realistic about the stigma in society and help your child navigate that as and when it ever comes up, and you may face it yourself if a prejudiced person were ever to find out your child has HIV. You have to work out who, if anyone, you ever tell and when

Medication compliance with adolescents is a known issue, they find that hard sometimes, and longer term non-compliance with medication WOULD be a problem

And as hard as it is, even though you can have a totally normal life span, shit happens, life happens, and you may find yourself outliving your (adult) child. i don't think pretending that couldn't happen is helpful, it could, even though your child may well be in their late middle ages by that point

[Barbadosgirl]

I currently said I couldn't proceed where a child had Hep C because it is life limiting, there is currently not cure and it can lead to liver failure/cancer. Someone very close to me died of liver failure and I know I would not be the best match for a child in that situation- I would be in a near state of panic for most of their lives! Given that the outcomes for people are so much better given the advances in drug therapy I think I would not rule out HIV. I think it helps that I know someone living with HIV and I have a better awareness of how it is managed. I admit until I found out about my friend I did realise how effective the drug therapy was and my lack of awareness/knowledge might have led me to rule it out through fear. Perhaps a lot of people are similarly misinformed, your sw sees a lot of that so she was surprised when you felt differently?

[Kewcumber]

I said no to HIV but for reasons which wouldn't apply to you. I was adopting overseas and I think it unlikely that you could be sure a child would have been taking anti-retrovirals. The risk I ended up taking on was in some ways just as great the differnce was I was more confident of being able to deal with the outcome if the risk didn;t work out in my favour.

I don't think you need to get too hung up on why some people say no to certain risks and others don't - its very much a personal decision based on both your risk assessment, personal experience and what you feel able to deal with if the worst happens.

Whatever the (known) risks when it comes to a specific child you will have the opportunity to research stuff at the time. I wasted a lot of time looking into things which didn't even creep along the distant horizon when it came to it!

[AngelsWithSilverWings]

My DD had Hep C at birth . We had ticked " would consider" box for that. I can't remember what we out for HIV.

When we were matched with DD we called the Hep C trust with a list of our questions and concerns to help us make our minds up about proceeding with the match.

They have a help line manned by people who have or have had Hep C and the guy I spoke to was brilliant. He went through loads of statistics and examples of how difficult it actually is for the virus to spread family members. He also went through life expectancy and treatment success rates with us. He answered all of our questions fully and patiently.

We decided to go ahead with the adoption,but as it turned out she actually cleared the virus herself. This is ,apparently,quite common in babies born with the virus. She got the all clear when she was around 18 months old.

I know it's not about HIV but I thought my experience of Hep C may be interesting to anyone thinking about the matching process.

[AngelsWithSilverWings]

Sorry just read that back and there are lots of typos ( tired and have a headache so really should be putting the iPad down and going to bed!)

[Floraclare]

I said yes to HIV - if you're on treatment and your viral load is low, any risk of transmission is low enough to be almost non-existent. There is no known case of HIV being transmitted through unprotected sex, if the viral load is undetectable, which is commonly found for people on treatment - and would be similar for any blood contact. And as treatment is now so good, it probably has a similar (or possibly better) mortality and morbidity rates to diabetes.

I've previously worked in sexual health - and outcomes for HIV are incredibly good, but the stigma is sadly still there. It's also a real struggle for parents with HIV, to tell their children they are also HIV positive and this will give another level of complexity to the adoption.

[CloserThanYesterday]

Just popping in to say thanks for this thread. We're just at the point of matching criteria and I must admit HIV/hep is causing us problems as to whether we could consider it or not. Once again, loads of great advice and useful opinions flying around.

[fledtoscotland]

This thread does make me question our choices and prejudices . I feel I need to protect BC (natural) from the fear of the potentially unknown. It's just shows not all potential adopters are the same - DH and I are agreed that we could cope with developmental delay/FAS/many medical conditions (probably because of our background).

[Mama1980]

My youngest dd (she's has been in my are since birth by sgo and the adoption will almost certainly be completed before she is 18 months old) was at risk of hep c and HIV exposure, she was born addicted and had to undergo withdrawal in the nicu.
I did a lot of research but ultimately it made no difference to me. I wouldn't exclude on those grounds. Transmitting rates are very low and I thought the benefits for my other children outweighed the risks. As it happens she is testing clear.
She is also at risk of FAS and I found that aspect much harder to get good information and advice on. Ss were far more willing in my experience to underplay this aspect which in my opinion is strange given that it is potentially much more of a 'issue' than a recognised and treatable medical condition.
Information is key as there are so many different factors that come into play and each child and circumstance is different.