HIV+ child

[AmyV]

Hi everyone,

I do not know where to start and how to tell my story. My daughter is 3 year-old. Her coming to the world has been the most beautiful thing that has ever happened in my life and, like any mum I guess, I love her more than words can tell.

I went to the A&E 5 months ago as her nose had been bleeding on and off for the past two weeks. The doctor requested an HIV test when the results showed a low number of platelets. The test came back positive. I may as well have died that day.

My partner and I have tried to deal as best we could. We put on a brave face for the world and for her. We never cried during daytime. I went back to work and pretended things were fine, although I knew that life as we had known it was forever a thing of the past.

Giving ARVs to our daughter was not an easy thing. Thinking back, we should have fought harder with her to make sure she took everything. But we felt too sad to even consider upsetting her -- I wanted her to be always happy.

The doctor at the hospital found out that we did not give her the medicines the way it should have been given her. Social services were informed. And before we could say anything or seek support, a court order placed our child under state care. She has been taken away from us for over two months now.

As I was trying to come to terms with living with HIV, I now have to deal with not living my child. Believe it or not, the latter is infinitely harder and the pain it causes us can hardly be measured.

I know that my words are not really relevant, and perhaps they do not even belong to this forum. I just have no one to talk to. Just as I was told that I am not the typical HIV+ person, I am now no longer a typical mum, so the feeling of isolation grows deeper.

Is there any mum here who would be willing to share their experience with me?

Thank you so much,
Amy

[emeraldize]

Hey Amy,

Welcome. Huge hug. Goodness what a difficult time for you and your partner.

Sorry, but I'm not following you a bit here. Can you clarify a few things?

First, if you don't mind, what country are you in?

Second, did you know you were HIV+ before you became pregnant?

Or, was the discovery of your child's status the red flag for you and possibly your partner, too?

Do you understand my confusion? I can't tell from what you've written which came first.

If I understand the story better, I might have more to share with you.

Further, if you magically post three times, then I can go offline with you to discuss things privately.

Glad you found this forum. Your words are relevant. Further, you need to understand there are no typical HIV positive persons. We are all as unique as the way the virus plays out in our bodies and minds and lives.

Em

edited to add: in reviewing your post " I am now no longer a typical mum," I'm thinking you are in the UK possibly.  Looking forward to your reply.

[AmyV]

Hi Em,

Thank your for replying. I'm French but have been living in the UK for a while (I'm even considering applying for citizenship...I never felt to be too much of a French person  ) but we are now stuck in France as our child been taken whilst on holidays at my mum's. French laws are a bit odd to say the least and we cannot get her out of the country - even though she's British. Try to figure out.

I didn't know about my status before. The thing is that I never felt very concerned about HIV. I know it can sound weird but there's this thing that makes you feel like HIV cannot affect you. Just because you're a girl who doesn't take drugs and doesn't have much sex. It all seems silly now - and pretty naive too.

I got pregnant a bit by accident. It doesn't mean that we were not happy when we found out, but it does mean that I had been in-between relationships shortly before discovering about my pregnancy. I just didn't think much of all this at the time, and didn't really knew or thought about seroconversion when I had my one and only blood test done early in my pregnancy. To me, everything was fine - second silly mistake.

I thought I was taking my child for a nose bleed. I was not expecting to stay there for more than a few hours. But when I was told that she would have to be kept overnight for them to investigate her platelets, I spent the night thinking 'this is leukemia, this is cancer'. And the knot I felt in my stomach just kept on getting bigger and bigger until the final blow of being told that the quick test came back positive. I was thinking that it was a mistake, a horrible nightmare. I just couldn't make sense of it. I just couldn't believe that a few pointless moments of pleasure could have been enough to jeopardize the life of my most dearest little thing.

The doctor made a point that treatment should start immediately. I completely freaked out - she was choking, nurses were holding her on her bed to force the syringes down her throat. And I am the one responsible for all this - how can I even be expected to keep my head up? How to deal with the guilt?

Oh dear. I'm just writing as things pop into my mind and realising how dark my story is. What worries me the most is that I cannot seem to get any straight information from doctors. How does a child grow up with HIV? And on meds? How am I ever going to tell her? For the disease? For her being placed with strangers? How to be a mum with HIV?


 

[emeraldize]

Hey Amy,

Thanks so much for the added information---that helps me to understand much more.

Make one more post and I can send a PM to you.

You're gonna be an awesome mum, you already are.

Hang in there.

Em

[AmyV]

And another post.

[emeraldize]

Great. Check your mail.

[karry]

Hi Amy
I am not yet a mum, but I feel sad that you have to go through this. No one has to go through what you are going through right now.

From the way you talk about your daughter, I feel and believe you are a great mum. I am sure your daughter knows you are the best mum.

I think its a great injustice being done to you.

If you need people to write and sign a petition to the french government, I will be more than ready to rally people for that.

I hope this nightmare gets over quickly for you.

In the meantime, please know that its not your fault! If you did not know you had HIV, you could never have received treatment for it, nor had your child monitored. Please dont feel guilty.
Hugs to you.
Karry

[britchick]

Hi AmyV,

Your story really touched me.Im so sorry for what has happenned.You are a very brave and strong lady.This is not your fault.Im sure that everyone who reads this will be sending you warm wishes and positive thoughts.

Please keep us posted and  I wish you well. I can tell that you love your daughter very much.

I wonder if you could try to take this further by writing to the French Government?

Britchickx