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Author Topic: To all mums and potential mums  (Read 7153 times)

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Offline whoknew

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  • Posts: 47
To all mums and potential mums
« on: September 24, 2009, 04:39:15 AM »
Finally got my daughters all clear ! at 18 months she no longer holds any maternal hiv antibodies and can officially be considered NEGATIVE. we knew she would be , I did everything I was told and the 3 other tests came back ok but to see the antibodies that carried over from me dissapear and get an official all clear is a wondrous thing.

so to all you ladies thinking about becoming pregnant or currently pregnant especially to those of you who were diagnosed during pregnancy , which is stressful enough already it can be done and you will have a healthy happy child.

It has been an interesting and strange road to go down , there were alot of consultants, midwifes, specialists, bloodtests, medication and a good few people to educate on the way. It was intrusive and I had to share information about myself I wouldnt normally but it was 100% worth it in every way.

I just wanted to share this with you , as to be honest there isnt that many people I CAN share it with as not many people know. I feel like I have fought tooth and nail to get my beautiful daughter and put myself through alot of different things physically and emotionally.

This disease should not stop you from achieving your dreams of becoming a mum.

lots of love from me... a 29 year old healthy happy hiv poz mum. Yes I have alot of other issues but for now I am happy in the fact that there are indeed fantastic days along side the bad ones and having my daughter has been truly worth it.


Offline BT65

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Re: To all mums and potential mums
« Reply #1 on: September 24, 2009, 05:21:34 AM »
Congrats, whoknew. I am a mum, but my daughter is 25, so I had her before I was poz.  It's great, though, about your daughter.  Times have really changed, and I'm glad.  This may bring hope to other ladies.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

tendai

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Re: To all mums and potential mums
« Reply #2 on: September 24, 2009, 06:12:44 AM »
congrats! and thanks for sharing

Offline Snowangel

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Re: To all mums and potential mums
« Reply #3 on: September 24, 2009, 04:07:09 PM »
Congratulations, Whoknew!

I had 4 kids that are negative as well ,and I totally agree, it is a long hard road but definately worth it in the end.

Enjoy your blessing!

Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline emeraldize

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Re: To all mums and potential mums
« Reply #4 on: September 24, 2009, 05:20:12 PM »
What good news!  Congratulations to both of you!

Offline #1 mom

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Re: To all mums and potential mums
« Reply #5 on: September 24, 2009, 11:15:14 PM »
Congratulations! I know what a relief it must have been to get that final all clear. I felt it when I got my son's all clear from Hep C.
Amy

Offline Sweet_C

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Re: To all mums and potential mums
« Reply #6 on: September 25, 2009, 08:13:07 AM »
Congratulations!!! I am so happy for you!
Tested positive on September 11, 2008

Offline Sweet_C

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Re: To all mums and potential mums
« Reply #7 on: September 25, 2009, 08:19:08 AM »
I am trying to conceive with my hubby.  How were you treated by doctors?  I've been told that HIV+ moms have to work with a perinatologist(?).  What else was different for you as an HIV+ mom versus a HIV- mom.

I am also wondering about how to handle questions about why I don't plan to breastfeed.  I had no idea that some women were so militant on this issue.

Sorry for all the questions.
Tested positive on September 11, 2008

Offline camille07

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Re: To all mums and potential mums
« Reply #8 on: September 25, 2009, 08:35:14 AM »
Great news!  I don't have any kids but I would like to have a child someday.  This was inspirational.

Camms

Offline TabooPrincess

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  • Posts: 269
Re: To all mums and potential mums
« Reply #9 on: September 25, 2009, 03:48:48 PM »
Great news!!  I'm nearly 7 months pregnant now with my first and sometimes the thought of the baby being positive scares me so much - I'm doing everything I've been told to and thankfully can come off meds again when baby is born - I've been pos less than a year now.

Sweet C - same for me - everyone keeps banging on about breastfeeding - I've just been saying 'I'll try but if it doesn't work for me then I'm not going to beat myself up about it.' But I need some better excuses!!!

Also - I'm hoping I'll become undetectable and have a vaginal delivery but if I need a C-section then what excuses can I give for this?!!!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Snowangel

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Re: To all mums and potential mums
« Reply #10 on: September 25, 2009, 05:09:31 PM »
Sorry for the hijack, Whoknew!

As far as breastfeeding questions, I just told everyone who straight out. NO, I am not breastfeeding.  I have a lot on my plate already and I couldn't worry about pumping and freezing milk.  I was working full time at the time so everyone just took it at that.  It is strange how some people are so militant about that.  Cabbage leaves work pretty good to dry your milk up, that pain was worse than the labor pain to me.  I think they actually might have a med for that now-a-days.

If you happen to get a c-section, just say there was a complication during the birth and for the childs safety you chose to do an emergency c-section, you could say that your water broke earlier than expected, the child was breech, there are a million reasons for someone to have a c-section, just because you do they shouldn't suspect anything.

When I had my son in 98, I didn't realize it at the time but they put me in the last room in a hallway where there was no other patients, my mothers pointed it out to me later. In 03, I was having 3, so I got treated differently anyway, but it seemed like everyone was more accepting of me then.  I am not sure what else is different because I was poz for both pregnancies, except that I had to have AZT by intravenous during the births and if the Mom is poz, the baby will be on meds for 6 weeks, every 6 or 12 hours.  If you are having someone in your room that does not know your status, make sure the nurses and doc know not to mention it.  They hadn't taken out my IV by the time my mother came, she didn't know I was poz at the time so she wondered what I was hooked up to, you might want to make something up for that.
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline whoknew

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Re: To all mums and potential mums
« Reply #11 on: September 26, 2009, 03:49:27 AM »
Confidentiality was my biggest issue. I didnt want them to be discussing medication etc when my other family were visiting so I made sure the midwifes and DRs were well aware of my concerns.

I am in the uk so the care is different but I saw an ordinary midwife who had experience of treating hiv positive mums , infact locally there were three more due around the same time as me but none of us met... I often wish we had.

I had a consultant obgyn  to oversee the pregnancy who worked closely with my hiv dr to monitor my viral levels. I had a cesarean because of previous problems with my first daughters birth ( I did not know I was positive the first time round and had a bad delivery she is also luckily negative )

I made sure that the info was not recorded on the front of my notes like other medical conditions, we have to carry our pregnancy notes around with us in late pregnancy and I was worried about leaving them on the bus or somewhere so I made sure the info was only recorded in my hospital notes.

There were a good few times that I was asked if i minded a student dr being present at various appointments, this I was ok with  many people commented that I was the first women they had met who had planned a pregnancy rather than becoming diagnosed during pregnancy but I know its not unusual at all.... its just where I live is not as big as say some of the London hospital where the drs and nurses are much more used to people with hiv.

I had the AZT drip before my cesarian despite the fact that the law has changed and as I was undetectable I didnt need it the policy hadnt changed in my local hospital but has since been updated ! I did have a side room rather than be on the main ward . This was partly because of confidentiality and I think they were trying to be sensitive to the fact that I may not want people seeing me give the baby medication or overhear some private discussion but I did feel a bit isolated.

I dont think you have to worry much about peoples questions, one thing I learnt during both my pregnancies is that people offer all kinds of advice and really dont listen to what you are saying LOL. pretty much whatever you say someone else will decide they did it better so try not to worry.

If you have a cesarian there is no reason to have excuses there are loads of reasons why that happens same as breastfeeding, yes people can be preachy about it but I just nodded and said yes I will breastfeed and then bottle fed without anyone ever asking why. I think half the time they just want to tell you the "breast is best" message and when it comes to it no one actually notices if you bottle feed.

Obviously the hospital know why and wont pressure you. One lady at a toddler group was shocked at me when she started going on about cesarians , breastfeeding etc I told her I was choosing a c section because I was too posh to push and wasnt going to breastfeed because that was disgusting... sure shut her up !!!

The drs were very good at making sure no one came to my room to do medical stuff while my mum and sisters were visiting, but I spelled it out to them in no uncertain terms that I was conserned about accidental disclosure, my sister is a nurse so I made sure my medical notes were with the midwife and not at the end of my bed as she is SOOOO nosey.

I never mentioned why I was in a side room, or anything and no one asked, I missed being on the main ward but for things like medicaition and talking to the peadiatritian it was so much easier to have my own space.

Baby was given AZT twice a day for 4 weeks infact I managed to give this to her whilst my mum stayed for a week !!  my husband just took her upstairs and did it. She was fine and actually liked the taste.

There were a few problems between old rules for giving azt and the new ones as my peadiatritian thought she had to have it for six weeks and wanted to give  septrim to prevent oppertunistic infections as a precaution. There was no risk from this as she was less than 1% chance of being infected but he was a little behind the times and over cautious. Make sure you know the guidelines some hospitals are a little slow !! I switched to another doctor who had worked at the large london hospitals and who knew his stuff :)


I met one wonderful nurse who inspired me to be strong and make sure I made my preferences clear etc she was an african lady whos brother had died of aids in her home country , she had come over here and trained to become a nurse she made sure she brough my babys medication to the room every night and spent a little while chatting to me and telling me everything I was doing was worth it. She made my time at the hospital go quicker and if I had a wobbly moment about what people thought of me she reminded me that it was none of their buisness and that I am doing the very best for my daughter , I sometimes worried I was selfish for doing it but how is it selfish to give life ? and to then put yourself through all kinds to protect her and ensure her health. That is the essence of what a mum does ... why should that be any different for us ?

I dont know how the medication may have effected her but I can honestly say there are no signs of anything being wrong as a result, she is clever , talkative and cheeky. Healthy happy and hitting all milestones when she should be.

Sorry for the long rambly post, I hope you managed to read it  hahaha. Love and happieness to all of you . xx

Offline whoknew

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Re: To all mums and potential mums
« Reply #12 on: September 26, 2009, 03:59:58 AM »
PS if you are planning a c section a good reason is to say that the placenta is too low :)
If you have a natural birth , and end up with a cesarean then there is nothing to say , emmergency c sections happen all the time if things are not progressing.

Many many women bottle feed, The baby might not have got the hang of it , or you just might not have wanted to , I know for us the choice is taken away but it is not unusual for women not to breastfeed even without this disease.

Additional hospital appointment can be for any reason and I think people dont really notice.

If you do get a side room, then no need to explain , you were just very lucky that day.... lots of people pay extra over here for that and I got it for free :)

If you come across someone who is negative towards you complain, I had one incident with a high level midwife at one of my hospital appointments who felt the need to hug me, and tell me I was so brave not to have had an abortian and she would pray for me. Also she stated a number of times that she couldnt do what I was doing because even a less than 1% risk would be too much to put a precious child through !!!!! I calmly explained that the alternative was for my baby never to be born ! to me that is far worse. I reported the incident to my drs who reprimanded the women and sent her on some specialist training with the hiv team... :) her personal opinion shouldnt have come into it and she had no right to make me feel bad. she was very shocked when I said I had planned the pregnancy knowing I was positive !

but that was one person amidst many lovely people, most of which didn't bat an eyelid at me and my medical problems

(ill stop going on now , I promise )

think happy positive thoughts and dont worry about everything xxxxx

Offline Sweet_C

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Re: To all mums and potential mums
« Reply #13 on: September 26, 2009, 11:10:34 AM »
Whoknew and Snowangel, thank you so much for sharing your experiences.  I never thought of how hard it might be to maintain confidentiality at the hospital.  Snowangel, it sucks that they just stuck you at the end of the hallway.  I think I actually would prefer to be isolated, but I wouldn't like being treated like a leper.  You would think that people would be more sensitive.

On breastfeeding,  lying and saying that I'm breastfeeding is a wonderful idea.  I was formula fed the whole time when I was a baby, so I know it's not nearly as bad as people say it is.   I didn't have any of the typical problems that go along with formula feeding.  

I definitely have no guilt about trying to have a baby.  I've seen the studies and the risks of HIV transmission are much lower than for a lot of other genetic conditions that could be passed along.  I feel that me an my husband have a lot of love to offer a child, so I feel sorry for the person that tries to imply that I shouldn't be doing it!

How long do you have to stay in the hospital after giving birth?  Do the babies tolerate the drugs well or do they have the same side effects that adult have when taking them? 
Tested positive on September 11, 2008

Offline whoknew

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  • Posts: 47
Re: To all mums and potential mums
« Reply #14 on: September 27, 2009, 04:59:14 AM »
No side effect that I can think of although with a little baby it would be hard to tell if the yukky nappies were a normal occurance but she didnt seem to have any tummy problems etc. It is a short course and the only thing that they warned me of is that they can sometimes become a little aneimic due to the AZT but that this does stop when treatment stops and they do keep an eye on it. You will feel bad giving it to them, but they wont remember and infact my baby liked the taste so was quite happy to have it !!  :o

I stayed in hospital 2 nights with mine and I had a cesarean but they were happy to send me home as soon as they had made sure I could walk around and knew how to give medication to the baby. No different really to a normal birth.

If you can , go to a large hospital with a track record of treating people with complicated medical problems, its not that the HIV will cause any problems for birth or pregnancy really its just that you will find it alot easier if they have experience as it wont seem unusual to them.

and if its any help one of the consultants I saw who had worked in a Large london hospital for years prior to coming down to the hospital I was at said it was less of a problem having hiv during pregnancy than say .. diabetes they basically just have to monitor. Nothing untoward happens its just a case of getting levels right etc.

In the 5 years he had been working with HIV positive mums in London he had NEVER seen a case where transmission had taken place when the mother took medication and followed guidelines. Even in the few cases where the mum was not undetectable at the birth and went into labour suddenly those babies were still Negative. The medicine works. The danger is if you do not know your status and therefor can not get treatment.

good luck to all xx


Offline Sweet_C

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Re: To all mums and potential mums
« Reply #15 on: September 27, 2009, 08:34:57 AM »
Wow that information is very comforting.  I feel very comfortable with my gynecologist.  He is very kind and caring, but he is not up on any of the current information on HIV.  Everytime I go he has some new factoid to tell me, and it's always from  back in 1992.   I think I will tell him about these stats because the last time I told him I was trying to conceeive, and he gleefully informed me that there was only a 10% chance of transmission if you are careful, lol.
Tested positive on September 11, 2008

Offline whoknew

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  • Posts: 47
Re: To all mums and potential mums
« Reply #16 on: October 01, 2009, 05:03:08 AM »
Can your consultant write to him with some more relevent info ? sounds like he is being positive but with outdated information.  Good chance to edcucate  :)

Offline spicy1

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Re: To all mums and potential mums
« Reply #17 on: October 12, 2009, 03:00:06 PM »
Hi Whoknew

Ur post is God sent!! no one can imagine what im going through right now. My son is 16 months old and tested negative at 3 months, (he had a PCR test done). On sunday morning i noticed that his lymph nodes on the side of the head and base of the skull were quite swollen, he had had his MMR vaccine done 11 days back and im hoping and praying his glands are reacting to the measels shots. I took him to get his bloods done sunday morning and will be getting his results tomorrow. You cant imagine what im going through at the moment the anxiety, the prayers all i can do is leave it up to God. I was on medication during pregnancy and had a C-section at birth. My son also took medication for 6 weeks after birth. I know that the mothers antibodies are normally present in the baby and only clear after 18months but really have there been instances where the baby tests negative and later tests positive?

Offline srmn98

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  • Posts: 133
Re: To all mums and potential mums
« Reply #18 on: October 12, 2009, 09:15:08 PM »
hello all,

interesting and inspirational thread. to "whoknew " -- we have very similar stories, only my baby boy is 8 younger, only 8 months old. he tested negative to all of his viral load tests and is according to my specialist, "officially negative" -- but it will still be a relief to get the final western blot test. i faced many of the same issues you talk about and handled them in a similar fashion.

to spicy1-- I am not sure where you are, but here in the US i believe they consider the baby negative if they test negative via PCR at 2 weeks, 6 weeks, and again at 4 months. I believe if those tests are negative and you do not breast feed, your baby is considered negative. let's hope that your son's swollen lymph nodes are a "normal" seasonal flu or cold. but of course you are doing the right thing by getting blood work done. did you ask for a pcr or antibody test ? let us know but i am hopeful for you that it is a normal "sick," especially this time of year. (although i am not a doctor and am just giving my opinion!)

best regards to you all, and i'm happy to talk to anybody who wants to be in touch with somebody that has recently gone through an hiv positive pregnancy.

sara



Offline #1 mom

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Re: To all mums and potential mums
« Reply #19 on: October 13, 2009, 03:34:37 AM »
spicey1 - I think it is very unlikely your son is positive. It is possible to test negative then positive but it is extremely, extremely rare. My son Lucas was one of them. Lucas is adopted. His birthmother was HIV & Hep C pos. She took no medication for either and had no prenatal care. She was a vaginal delivery at 28-31 weeks gestation. Lucas was placed on 6 weeks AZT. He developed severe anemia and had to be transfused, but that could have been from the prematurity and not necessarily the AZT. Lucas was tested negative at birth and again at 4 weeks for both HIV & Hep C. He spent 48 days in NICU. When he was discharged the pediatrician I took him to had no other pos patients, so rather than take any chances she sent us to a PID right away. The PID felt there really wasn't any chance Lucas was positive, he looked like a "healthy" preemie who had no spleen or lymph node enlargement, had completed 6 weeks AZT and had 2 negative viral loads. Because we had traveled about an hour the PID decided to run another viral load even though Lucas was about 9 weeks and standard procedure would be to wait until 4-6 months. Well, we got a shock, his viral load was 100,000. We returned to the PID for a confirmation test about 2 weeks after the initial test. At that time he had some lymph node and spleen enlargement. When the test came back his viral load was > 500,000 which is as high as the test goes. The PID said he'd NEVER seen that happen before, and he started working with HIV before anyone knew what HIV was. He said the kids he'd worked with looked "sickly" from the beginning and rapidly got worse until started on ART. We started Lucas on an ART cocktail and his viral load quickly became undetectable and his CD4 has always been normal. At 18 mo we were able to say definitely he did not have Hep C. Lucas is 3 now and other than needing to take ART, he's not having problems from the HIV. The PID said he feels Lucas must have become infected during delivery not in utero. Because of that the birth test was negative. The 6 week course of AZT was enough to keep the viral load undetectable at 4 weeks. Once the AZT was stopped the viral load skyrocketed. He said the viral load in infants normally does skyrocket and they appear very sick.  It is very unlikely that your son at 16 mo would test positive now. I'll keep you both in my prayers because I know the anxiety you're going through, but I believe the test will be negative. You did everything right, Lucas' birthmother did everything wrong and it still shocked the PID that he tested pos.

Amy
Amy

Offline spicy1

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  • Posts: 22
Re: To all mums and potential mums
« Reply #20 on: October 14, 2009, 11:32:14 AM »
Thank God!!! i got my sons results today and its like a heavy weight has been lifted off my shoulder. His tests results came back negative, i wouldnt wish the anxiety i went through waiting for the test results on any mom. @ #1 mom lots of hugs and kisses to your son i cant imagine how it feels to have to give him meds every day knowing that such a situation would have been avoided.

I believe my son must have reacted to the MMR vaccine hence the swollen lymph nodes but i cant describe the relieve.

cheers mums and thanks for the support and to whoknew congratulations on the all clear test results for you baby i can relate to the relief you felt.

tendai

  • Guest
Re: To all mums and potential mums
« Reply #21 on: October 15, 2009, 09:33:39 AM »
i just wanted to ask if an HIV+ mom can bottle her breastmilk and then feed it to the baby. isnt they say the virus dies when its outside the body..just wondering

Offline TabooPrincess

  • Member
  • Posts: 269
Re: To all mums and potential mums
« Reply #22 on: October 19, 2009, 01:04:21 PM »
I'm 30 weeks now - got my viral load this morning and it's 1,800.   >:(

I'm desperately hoping for a vaginal delivery and I've been 100% accurate with the medication...presume there's no chance I can get down to undetectable in 5 weeks now...
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Sweet_C

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  • Posts: 167
Re: To all mums and potential mums
« Reply #23 on: October 20, 2009, 06:04:47 PM »
i just wanted to ask if an HIV+ mom can bottle her breastmilk and then feed it to the baby. isnt they say the virus dies when its outside the body..just wondering

I'd like to know the answer to this too. 
Tested positive on September 11, 2008

Offline Sweet_C

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Re: To all mums and potential mums
« Reply #24 on: October 20, 2009, 06:05:21 PM »
(((((TabooPrincess)))))
Tested positive on September 11, 2008

Online Ann

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    • Num is sum qui mentiar tibi?
Re: To all mums and potential mums
« Reply #25 on: October 21, 2009, 09:07:54 AM »
i just wanted to ask if an HIV+ mom can bottle her breastmilk and then feed it to the baby. isnt they say the virus dies when its outside the body..just wondering

I'd like to know the answer to this too. 

Theoretically, it could probably work if you were to refrigerate it or microwave it and let it cool, but I'd say it's not a good idea. Why take the chance? I can't see an hiv health care specialist anywhere recommending doing this.

Ann
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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

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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 Snowangel

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Re: To all mums and potential mums
« Reply #26 on: October 22, 2009, 10:32:51 PM »
Yeah!!! Spicy!!  I am so happy for you and your baby!

Snow

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bleueyes

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Re: To all mums and potential mums
« Reply #27 on: November 30, 2009, 11:17:32 PM »
Congradulations.  I had my daughter after I was diagnosed, she is negative and healthy.
Congradulations again!

bleueyes

  • Guest
Re: To all mums and potential mums
« Reply #28 on: November 30, 2009, 11:20:51 PM »
Theoretically, it could probably work if you were to refrigerate it or microwave it and let it cool, but I'd say it's not a good idea. Why take the chance? I can't see an hiv health care specialist anywhere recommending doing this.

Ann

I agree, I bottle fed my daughter formula. 

 


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