Do children/teenagers have a right to know they are infected?

[gemini20]

After one of my HIV talks this week a member of staff disclosed to me that both his sister and niece died of PCP in 2005. His sister was infected by her late husband in the early 80s and she unknowingly passed the virus onto her child who was born in 1985. What has troubled me about this story is that his sister was in complete denial about her situation and so never told her daughter that both of them were infected until it was too late.

The daughter was well and healthy throughout her childhood and teenage years so had no reason to suspect anything. Unfortunately at the age of 19 she developed PCP and subsequently died. She was only told shortly before she died that she had been positive since birth.

It has got me thinking about whether parents have the right to withhold such information from their children, particularly as they reach their teenage years and adulthood. Although fewer children born to positive women are developing HIV themselves, I suspect this sort of case is still occurring.

The issues have been swimming around my head for 48 hours and rather than spin anymore I thought I'd sound out the words of wisdom from members here.

Thanks,

Emma

[ademas]

I think the child should know all along.
There are too many things every individual can do to safeguard their own health--not to mention to prevent transmission!
Lordy...I remember doing a "blood pact" once with 3 friends when we built a club house in the woods at the age of 8 or 9.  We all pricked our fingers with a needle and pressed our fingers together.
Some kids are sexually active at 12-13 these days.
They should know.
(How on earth do you keep it a secret once they start HAART?)

[Moffie65]

Shit Emma, will the insanity ever cease?

Earlier this week an interesting thing brought me to tears, and tears of anger, mixed nicely in with tears of total astonishment.

My dog groomer, is a single mother for all intents and purposes, as her husband has a way of getting caught with the drugs he uses.  Otherwise, you wouldn't ever suspect this very dear woman to have anything but a normally stayed existence.  She struggles, but she is very good with animals and does a fair job for an insanely low charge.  OK, now you have the background and place that all into a rented singlewide, with three teenagers and now you have the photo.

I said to her in passing, while inviting her and the family to the AIDS Walk; that I could supply her with condoms for the two boys, if only she wanted to do that.  She looked at me in horror and stated curtly that her sons didn't have "promiscuous" sex, as they had Jesus, and He would protect them.  I said, "so did I (have Jesus) and that didn't stop me from messing around in Missionary Boarding School", and when I finished stating that, I noticed that she had completely disconnected from the conversation and was spewing some Pentecostal shit and quoting Bible verses, which were incorrect but I failed to see the need to correct her on Scripture that she wouldn't understand.  Like ademas has stated, some of us started to be sexually active at 12, and yes, it was really fun..... 

I left with the two toy poodles looking for all the world like puppy centerfolds, and having a really difficult time driving due to the tears of anguish I had for this poor dear mother who is trying so very hard to raise a family of "Purity".  Unfortunately, I know who her kids hang with and they ain't none of them, pure as the driven snow.  No, I am so sad.

Now, sorry for that rant, I know you wanted input as to the subject of your story.

This story also brought me to tears, because somehow I feel like we have failed to get the word to the really important people of the society, and that is truly the parents.  What a sad story you have shared, and I feel very strongly that a parent has absolutely no rights to privacy what so ever if they pass HIV on to the child.  That parent should have a legal responsibility to take every precaution to protect the children, but at the same time to make sure they know that they have the bug in their bodies.  What you have so passionately recounted here is a sure case of pure and unadulterated example of infanticide.

Now, if you were speaking of a family in say, Kenya, or Uganda, then the story would be different, but seeing that I suspect that this is a Western society you are speaking of, and with that knowledge, know that there was absolutely no reason for this parent to keep the news from the kids; well then I would hold them completely accountable for the death of any of the children.

Interesting though, there is a family here whose adult son died of PCP in 2000.  We had a complete system of care and drugs in place, and the health department where this assistance was available was only six miles from their home.  However, the parents are fairly old, and live with Jesus; so their knowledge of the actual availability or the facts of HIV survival was not even on their radar screen.  We are talking of people who live in a very dark and uninformed place, so can we not partly hold ourselves to account for not getting the word out in time to save yet one more senseless death?  I don't know the answer to that one.  I would suppose that to some degree, like Hillary said, "It takes a village".  If on the other hand you are of the mind that the miss-information dolled out of Washington for the last 25 years, has come full circle and now when women and straight men are dying just as they come into care; then I would suppose there is some complicit responsibility from that source also.  

In the end, it all makes me so sad that we live in one of the most advanced countries on the planet, yet we are handling a world wide pandemic just like the Chinese.  DENIAL!

So Sad!

In Love and Support.

[Alain]

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[newt]

You have a serious medical condition with options for treatment, you need to know.  When and where and how and from whom need some thought, but now you must. Clearly, people under 18 are able to make informed choices about their health care, prob from quite an early age, they's not dolls.  In the UK if parents didn't tell then matters would be taken out of their hands at some point.

- matt

[gemini20]

This particular case was here in the UK, just outside London - and there was no intervention from outside agencies because no one knew of the situation. After diagnosis the mother moved to a different area where no one knew that her husband had died and carried on a life with everyone living in total ignorance of her and her daughter's situation. She was in complete denial that she had been infected and so took no steps to access any form of support - social, medical or psychological; and also according to her brother never informed subsequent sexual partners (wouldn't surprise me if a cluster of cases appears at some point in this area similar to that in St Ives, Cornwall). Because of her denial it also meant her daughter was in total ignorance of her situation and never had the opportunity to benefit from HAART or know that she was a potential risk to sexual partners.

However difficult disclosure can be, if someone else's life is at stake then the onus is on the parent to share that information with their child. Knowledge is power after all.

And Moffie, thanks for sharing the story of your dog groomer - it reminded me of woman who told me that I was 'evil' and shouldn't be teaching children about the reality of HIV - she also believed that her children were good Christians and were therefore immune to this!

thanks all for your thoughts,

Emma

[newt]

Excuse me for swearing, but fucking scandal.  - matt

[Queen Tokelove]

I think a child should know if they are infected. I agree with Matt, I think it was who said children are not dolls. It's a whole new generation and I feel they can handle it. The parents should be educating their children on the virus and the ways society deals with it.

I have 3 children that don't live with me. I know for a fact my youngest one knows my status, we have never sat down and talked about it. I do know he is sexually active, he's 16, and when he lived with me I made sure he knew where the condoms were but was also proud to know that he had condoms of his own. I communicate with him and let's him know that if there is anything he wants to talk about with me he can and at times he has.

Funny that the woman thinks Jesus will protect her children or herself from being infected. I am a firm believer of fate and karma. Maybe my thinking is way left but I feel I was infected for a reason, not just because my ex chose not to tell me he was poz. I don't see this as the end of the world, in the beginning, I did, but after living with it for 9 years, I'm more like oh well, what time I have left I will live to the best of my ability. If I can help someone who is poz deal with their life and avoid some of the pain I have gone through then I'm a better person for it and I feel I will receive my blessings accordingly. I try to live my life on a positive note, no pun intended.

[penguin]

could go off on one here, about lack of service cohesion, and the size of holes in certain dept's safety nets..but won't.

There are numerous studies which show children actually deal very well, thank you, with (age appropriate) info re long term/life affecting health issues. Often, they deal with things far better than adults - cos, certainly where younger kids are concerned, they don’t have the frame of reference which attaches blame/guilt/shame etc to illness., and are by and large, not so screwed up about death.

Parents, & sadly some professionals, will often take the view that it is better not to talk to children about what is going on - it will upset them & they won’t be able to cope, etc.  This is mostly untrue -  (and is far more to do with the adult’s emotional stuff) kids actually display more emotional and behavioural probs when they are not kept informed, and not allowed to explore their worries/ be involved in decision making etc. They do this wonderful thing, children, where no matter how shit you tell them the future’s gonna be, they will find something immediate which will be better - like, going to a party tomorrow, or on holiday at half term, or new shoes…always amazes me, makes me smile, that resilience.

Different but similar, I often at work have clients with long term, severe mental health issues ,who have children of various ages - in some way, these kids are usually involved in caring for mum/dad when they are more unwell.  And yet most professionals I work with look at me strangely when I want to include them in care planning meetings, or sit down and explain what their parent’s meds do, why they get unwell, what we are doing to help them… because they might cry, or ask a difficult question, or something equally unacceptable. Better instead, to get them slapped on the child protection register and promptly forgotten.

No, going into the pk details of atypical anti-psychotics ain’t gonna help yr average 7 year old understand why mum thinks her brain is being scanned by teletext, & wants to tinfoil- wrap the dog. But, acknowledging that all is not right, how that affect them, & explaining what is being done to improve/manage things, can help them put some very difficult, traumatic experiences into some sort of context, which doesn’t involve guilt or fear or embarassment.

Kate

[cph9680]

That's terrible.  The kid definitely has the right to know.  I can only imagine if I was that girl, one day fine and the next thing ya know I find out I've had this terrible disease just because my parents didn't feel the need to disclose!  I think I'd have to go postal on the parents!  

Corey

[Cliff]

Children should know (within reasons, as there's only so much you can explain to a 2 year-old).  But parents should be allowed some discretion as to when and how they are told.  I don't think the government should be in the business of telling parents how to raise their children (this is a one-off tragedy, as I suspect most parents do their damnedest to help their children cope with being positive).

To me the issue here is not that the children should have been told, but that they were never treated or even tested.  Even if she had told them at 8 that they were HIV positive, there's not much they can do on their own to seek treatment.

[Eldon]

Hello Emma, it is Eldon.

I DO beleive that everyone should have the RIGHT to know about their HIV/AIDS status. This way they will have a better understanding with their health and take action to DO something about it. It is better to KNOW rather than NOT to know.

BTW - It is good to hear from you.

Make the BEST of each Day!

[DanKenny]

Emma,

I certainly do.  I have an 8 year old infected son.  Upon persistent enquiries as to why he is taking meds, he had to be informed.  Of course, he does not yet know the implications for his own relationships (but i will let him know by the time he is 12) so he could protect himself and others.

Infact, it is one thing that constantly bothers me...how to handle that stage of the disclosure... when he is a bit older...and it would be interesting to share perspectives with others in similar situations.

regards, DK