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Author Topic: long long rant :(  (Read 4097 times)

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Offline whoknew

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  • Posts: 49
long long rant :(
« on: June 02, 2011, 11:02:06 AM »
I am having a bad day, sometimes I wish I was normal and I am fed up with being treated badly or differently because of my status.

I have had

Midwifes making judgemental comments, going behind my back and asking my consultants if there were any child protection issues with regards to "am I likely to infect any of my three children" how safe is it for them to live in a home with two positive parents ? what do they do if they need to take blood etc. One Midwife refused to treat me and handed my care to someone else.

Pediactric consultants not aware of the correct protocols for treatment of babies born to hiv positive mothers regarding testing and treatment. I had a registra want to wear full scrubs to take blood from my baby because of the percieved miniscule risk that he would have the disease and then transmit it to them :(

My children now have chicken pox and good god the confusion this has caused. I sent my husband with my baby to see the GP because he is only 4 weeks old and has 2 chicken pox I wanted to know what to do as I cant give him baby parecetamol. Hiv wasnt something I was taking into account just that he is 4 weeks old and too tiny for a viral infection.

The drs would not take my word for the fact that his first pcr test has come backnegative , I had a cesarian and undetectable viral load plus he has had 4 weeks of AZT I would have been hapy for him to go have a shot to reduce the likely hood of complications if this is the protocol for babys but its not. they have spoken to his pediatritin and a  number of other drs who I dont even knw about this and been told the same thing. Treat him like he is negative because basically thats what he is... make decisions based on his age not on his mothers hiv status but still they go on.

When I spoke to my gp he made me feel awful  about the whole thing detailing all the complications an imune comprimised child with hiv could have with chicken pox and suggesting that the fact he has got chicken pox might mean he is positive !!!!! he ISNT I know we wont have full confirmation of this untill 18 months but does that mean I will spend the next 18 moths being treated like I have infected my child ??

The dr even commented that "he didnt bat an eylid at my elder children having chicken pox he is happy to treat them the same as anyone else... well good for you dr because hell they have both had negative tests  4 negative tests each and I would bloody well think you would not treat them differently !!!!

My middle child is 3 and the last time I took her to the drs with a chest infection they asked about her staus ?? which they know !!

sorry Im ranting it just seems so unfair, I get that they have to be careful , they have to do things by the book but I have had enough. I have done everything in my power to ensure my children have no HIV and are not at risk  I have been through hell to ensure they are hiv free, I have been spoken down to , critisised and been acused of being everything from a bad parent to promiscuous.

I am a normal mum, with a normal life I do not fit into the catagories they want to place me in, I do not want to spend the rest of my life defending my right to a family life which is a basic human right !! and my children have a right not to be treated differently because of a virus that they dont even have.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: long long rant :(
« Reply #1 on: June 02, 2011, 11:17:34 AM »
That sucks!

I sent you a PM... well, I'm going to right now anyway.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline engineergirl

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  • Posts: 81
  • What?
Re: long long rant :(
« Reply #2 on: June 02, 2011, 02:00:23 PM »

I'm sorry you have to deal with this kind of treatment.  How horrible. I believe with all I am that you have that right to a family... Rant away... 
amanda j.
Currently 28 weeks pregnant with a little boy...

Offline usernotdefined

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  • Posts: 23
Re: long long rant :(
« Reply #3 on: June 16, 2011, 04:24:33 AM »
I just wanted to offer my support, outdated ideas, protocols and ill- informed medical professionals seem to be something we poz mothers have to deal with.

I'm just about to get on this merrygoround in terms of the treatment of my son who is due to be born on 24th June, and already I'm sick of the ignorance I've encountered at the hands of midwives, sonographers etc etc. I haven't even seen a paediatrician yet to discuss the baby's AZT and pcr tests as there is only one in my NHS trust who is "happy" to deal with babies born to poz mums..... Not to mention the issues that a friend of mine recently had where her baby was refused the routine infant immunisations because they were worried that the baby might be poz, despite her having followed all precautions to the letter since her birth....

It is so draining having to constantly justify yourself, I understand where you are coming from, i have even given up my battle regarding the AZT infusion prior to delivery, my hospital has not cha ged their guidelines and won't listen to me so I will have a 4 hour infusion even though there is no additional benefit or reduction in transmission risk, just because I am sick and tired of arguing and have reached the stage where for my sanity I have to pick my battles rather than going to war on every little thing!

Wishing you strength!


Offline Sweet_C

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Re: long long rant :(
« Reply #4 on: June 20, 2011, 07:49:32 PM »
That is so terrible...I can't even imagine how demoralizing that must be.  In the U.S. our healthcare is astronomically expensive but at least we don't have to put up with that kind of mess as much.
Tested positive on September 11, 2008

Offline whoknew

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  • Posts: 49
Re: long long rant :(
« Reply #5 on: July 15, 2011, 10:40:51 AM »
usernotdefined- I can so relate to what you are going through. If I were you I would change hospitals asap no consultant or pediatrician is allowed by law to refuse to treat your child ! Can you get your own hiv consultant to forward a copy of the gudelines for the transfusion to the other drs ? I ended up having a care plan written up by a very senior hiv consultant stating that I was undetectable therefor did NOT require the transfusion.

of course they still tried to give it to me so I pointed them towards my notes and said nope I dont have it

There are supportive nurses/drs/midwifes out there  infact my last pregnancy was so much easier its just this time seems to have been difficult. Maybe ask your consultant to recomend a hospital or insist they are "educated" before you give birth If you need to chat just PM me.


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