Is Rhogam still risky or is it now safe? - Mothering Forums

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#1 of 38 Old 09-05-2008, 03:08 PM - Thread Starter
 
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I am new to these forums...I did a lot of research on Rhogam, including a lengthy thread on these boards, and DH and I decided to refuse the 28 weeks shot. We do plan to have the postpartum shot if our baby is positive.
2 of our main concerns were the preservatives in Rhogam, as well as the fact that it is a blood product and it is impossible to screen for every known virus.
Today my midwife informed me that Rhogam is now preservative free (they use the rhogam manufactured by ortho diagnostics), and that it is now genetically engineered so there is no actual human blood.
While she respected our decision to refuse the shot, she definitely made us feel like we are taking a foolish risk and we are now second guessing ourselves.
If there are no preservatives, and if it is not a human blood product, are there still good reasons for refusing the 28 week rhogam shot?

Loving wife to DH and buddamomimg1.pngmama to DD (11/08) and DS (2/12)

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#2 of 38 Old 09-05-2008, 05:20 PM
 
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: I got the shot - under duress at 28 weeks, and again after delivery, but DS was positive. I am curious about this.

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#3 of 38 Old 09-05-2008, 05:51 PM
 
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You made the right choice, provided their has been no unusual injury to your belly during this pregnancy.

The rate of Rhogam efficacy by adding the prenatal shot only increases a few points, and poses far greater risks than waiting until after the birth.

::: Just another WAHM using this forum to put off picking up toys and cleaning my house.
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#4 of 38 Old 09-05-2008, 06:58 PM
 
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OK, as far as I've researched it is made from donor plasma (from multiple donors) to acquire enough of the anti-D to prepare and put into the product. If it is not made from human blood products at all, how on earth are they making it and where are they getting the anti-D from? I'd like the midwife to provide some info on that...I can't imagine that the companies that make it (and it still was a human blood product as far as the manufacturer inserts I was reading last year) dumped all their old supply and started using this freaky synthetic human-free stuff...

Oh and to answer your question, I have had 2 sensitized pregnancies, both with excellent outcomes...I am a stat for rhogam/winrho failure. I would not get it at all prenatally and would really, really, have to consider it postnatally. But then I know that 1) it did not work for me and 2) I've had 2 healthy babies even with being sensitized.

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#5 of 38 Old 09-05-2008, 07:55 PM
 
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It is true that it is now preservative free (Rophylac is the brand name, I think).

It is NOT true that it's genetically engineered and not a blood product. It's still a blood product. however, it's screened thoroughly for diseases we know about. As far as I could tell from research, the main risk is that there could be blood borne diseases transmitted in blood products that we don't know about. Before we knew about HIV, we couldn't test for it, KWIM?

However I will say I have gotten the 28 week dose in both pregnancies and plan to in this one as well, because I have just personally decided I prefer to take the "few points" of added efficacy against something we know to be potentially very serious, as for me the benefit outweighed the theoretical risk of unknown factors.

But, all that being said...both my other babies were negative too so it's true I exposed us to it for no reason. We'll see how this one comes out. It's totally a personal decision and you just have to weigh the risks and benefits for yourself.

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#6 of 38 Old 09-05-2008, 08:19 PM - Thread Starter
 
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thanks for your replies...i looked on the rhogam website today and it clearly states that it is a human blood product. It also clearly states that there is no longer mercury in the vaccine, so i guess the midwife did get that part right. I'm not sure where my midwife got that information that it is genetically engineered and not actual blood. they are midwives connected with an OB practice, so while they are supportive of and encourage natural pregnancy/birth, they still are pretty medical in their approach.
I am upset they gave me wrong information...both in the last appt and in this one i really felt like they were trying to scare us into getting the shot...she kept emphasizing if i get sensitized "there is no going back." i think they have a patient who refused the shot who did end up getting sensitized in the last trimester and tried to sue them.
i know it's common practice in a lot of countries just to wait until after birth, and we had been fairly confident in our decision - but now our midwives have us concerned that we are being foolish and irresponsible and that rhogam carries no risk, and I wonder if we're just overreacting by refusing the shot.

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#7 of 38 Old 09-05-2008, 09:06 PM
 
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There are some good threads on mothering concerning rhogam, do a quick search.

With my last pregnancy, I refused the 28 week shot but received one post partum.
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#8 of 38 Old 09-05-2008, 09:53 PM
 
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Post #4 has lots of good info. There might be other posts, too but I had to look quick 'cause I need to get supper.

http://www.mothering.com/discussions...ghlight=rhogam

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#9 of 38 Old 09-06-2008, 12:27 AM
 
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Quote:
but now our midwives have us concerned that we are being foolish and irresponsible and that rhogam carries no risk, and I wonder if we're just overreacting by refusing the shot.
Your midwives sound like they're a bit pushy because they got burned...when I was seeing a midwife, she was pretty laid back about the whole thing and said she'd had clients who had refused and it didn't bother her.

Look into the whole rhogam issue...research the ingredients, read what the manufacturers insert says etc. I guess, like vaxes, it comes down to risk on both sides and how much risk you are comfortable with...the manufacturer acknowledges that as a blood product coming from multiple donors it may harbor unknown viruses and may transmit CJD...so that is one risk. The other risk is that you refuse, you may become sensitized, and you deal with the outcome from there. Like I said, I come from the place where I took the rhogam risk, lost anyway when it failed to deliver what it promised (and I lost my baby shortly thereafter for unknown reasons, could or could not be related), and then I became sensitized and had 2 successful pregnancies afterwards (and no more shots...go figure). It all depends on how much and what kind of risk you can live with...and you can tell your midwives that sensitization is NOT the end of the world...

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#10 of 38 Old 09-06-2008, 01:04 AM
 
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Is it thimerosol free? Or is the thimerosol "filtered out", leaving "trace" amounts? That's what I'm curious about.
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#11 of 38 Old 09-06-2008, 02:20 AM
 
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i refused the 28wk shot of winrho
i did have my blood checked every 2wks from 26wks onward to make sure i wasn't sensitized
i asked to do this and my midwife was open to this option
i had the shot post labour as my son was rh+
i ended up with an emergency c section (preemie and footling breech) and the dr who took over care from my midwife kind of mocked me a bit when he found out i hadn't had the 28wk shot...but whatever

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#12 of 38 Old 09-06-2008, 12:31 PM
 
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#13 of 38 Old 09-06-2008, 01:39 PM
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It's not risk-free to take any drug. In this case, it's also not risk-free to refuse it, either. It's possible to become sensitized without any injuries or bleeding episodes--it happened to me. So if you want to refuse, just be sure you research the risks on both sides of the decision and are OK with them. I hear a lot of people refusing on the grounds that they are kind of in denial that there could be any risks to refusing, and that's not really informed consent IMHO.
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#14 of 38 Old 09-06-2008, 01:55 PM
 
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Quote:
Originally Posted by japonica View Post
It all depends on how much and what kind of risk you can live with...and you can tell your midwives that sensitization is NOT the end of the world...
As an Rh- mama who has never gotten the shot, prenatally or otherwise, this is what I would say as well. It is a matter of weighing your personal risks within your personal comfort zone, and making the right choice for you. Your midwife should respect that fully.

It is a blood product and while the mercury may have been removed, it's my understanding that they have to preserve it with *something*... so they may have replaced the thimerasol with something else which may or may not be toxic.

My concerns with RhoGam were primarily the fact that there is a possible connection to autoimmune disorders - long term studies haven't been done to prove or rule out that possibility. Prenatally, I don't like to take Tylenol because of potential effects to the baby: I am even more leery of injected blood products bearing antibodies that may or may not be necessary, to prevent problems that I feel (IMHO) are iatrogenic. Others may disagree, but as I said - you have to weigh your own risks, using all the information. And double checking the info you are given is awesome!! I'm sure you will make the best possible choice and have full peace with it.

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#15 of 38 Old 09-06-2008, 02:43 PM
 
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Quote:
Originally Posted by Devaskyla View Post

Post 4 has lots of incorrect and misleading info. The fifth paragraph plainly states that Rhogam does not cross the placenta, yet all other paragraphs either say or imply that it does. That alone should give you pause to consider whether or not this information is accurate.
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#16 of 38 Old 09-06-2008, 02:44 PM
 
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Originally Posted by applejuice View Post
It has traces of thimerasol. .
What makes you say this?
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#17 of 38 Old 09-06-2008, 02:45 PM
 
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Originally Posted by Collinsky View Post
My concerns with RhoGam were primarily the fact that there is a possible connection to autoimmune disorders - long term studies haven't been done to prove or rule out that possibility.
My understanding is that mercury exposure is the suspected culprit in the link to immune disorders. That is no longer an issue with Rhogam.
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Originally Posted by nashvillemidwife View Post
My understanding is that mercury exposure is the suspected culprit in the link to immune disorders. That is no longer an issue with Rhogam.
I will look into it again, but I have an underlying belief that messing with the immune system by introducing artificial agents is asking for trouble. I feel really sure of our choices, regardless. But I wouldn't want to give incorrect information to anyone!

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#19 of 38 Old 09-06-2008, 04:28 PM - Thread Starter
 
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Wow, these forums are great it's really helpful to hear so many responses.

Whalemilk...what were the consequences of your sensitization? If you could go back, would you still choose to refuse the 28 week shot?

Loving wife to DH and buddamomimg1.pngmama to DD (11/08) and DS (2/12)

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#20 of 38 Old 09-06-2008, 06:38 PM
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The main consequences for me were:

1. No more homebirth. At first we were going to comanage with a perinatologist, but insurance won't cover both so I switched to CNMs in the peris hospital...and then my titers went up (meaning the odds of it affecting the baby went up slightly too) and I got entirely sent to the peris, who are very conservative. This has a lot of ramifications for what kind of birth I'm going to end up having.

Some homebirth midwives will see you even if you're sensitized (depends on the state and the mw's comfort level) but generally speaking if your titers increase, that's a definite risk-out because it often means some blood mixing is occurring again and/or that the fetus is at greater risk of being affected by the antibodies.

2. Increased monitoring and all the side effects that go with that. They have to check frequently for signs of IUGR, heart failure, and anemia in the fetus. This can mean anything from just a lot of ultrasounds (what I am getting since my titers are lowish) to serial amnios (I'm told I could expect this in a subsequent pregnancy.)

3. We've adjusted our plans for family size. This is the hardest one. We had been planning a larger family, 3-4 kids or so. Now we're not even sure we are going to have #3, and definitely no more than that. Any subsequent pregnancies I would have to see the perinatologists from the start, get tons of ultrasounds, amnios, and other tests, and definitely have a planned birth rather than spontaneous labor at term. There's (per my doctor) a 10% chance that this next pregnancy would require a blood transfusion for the fetus in utero. Any pregnancies after that the odds go up even more, as do the odds of NICU time and other complications.

For some people I guess all that is "no big deal" but it's a big deal for me and I'm not happy about it. The theoretical risks of rhogam pale in comparison, IMHO.
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#21 of 38 Old 09-07-2008, 06:30 PM
 
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Just a few notes and thought I'd chime in...

About the post with the possibility of rhogam crossing the placenta, it was written by MT who has decades of experience researching vaccines and the immune system. So, although what she postulates may go against what medical experts would like us to believe, I would not write her off easily. For me, the question is this. If rhogam is made from the plasma of donors, collected to produce enough anti-D to simulate an immune response in a Rh neg mother, and is meant to be identical to the anti-D that would be produced by the mother if she were sensitized, what would keep even those trace amounts of anti-D from crossing the placenta? Is the anti-D from the donors so different in form from the mothers'? Is this not theoretically possible?

Also, then why after having a rhogam shot, do we often test positive for sensitization...is the anti-D in the shot not the same as the mother's own anti-D? Regardless of quantity, I'm just asking if they are the same substance, can the anti-D in the shot then not act the same way as the anti-D produced by sensitization?

As for consequences for me with regards to sensitization, basically the same as the PP but I didn't have an issue with it. Yes, that meant no home birth, but I did birth in a hospital with a doula and very "midwife-friendly" OB who let me do what I wanted during labor. Yes, I did have more monitoring, but that came in the form of ultrasounds to check on the status of the babies. Again, not a problem for me. Family size limits...I've had 2 healthy babies. I'm even considering one more child since I have not had any complications in my sensitized pregnancies. I know sensitized moms who have had 5 children. Yes, they did have more complications with the latter pregnancies but they did not let their sensitized status stop them from having the large families they wanted.

I see rhogam from a different perspective...it is not foolproof and it carries some risks that need to be considered. It failed miserably for me and I also question very strongly its role in the death of my first baby. My first baby died at term of unknown reasons yet the pathology report on the placenta showed some strange immune reaction took place that gradually shut down all the blood supply in the placenta. Correlated with the IUGR and growth rates from my DD, this started happening right after my last winrho shot. Seeing as the manufacturer themselves states that their product may contain any number of unscreened for pathogens and viruses, who knows what may have been in there that affected us. I do know that looking back, knowing what I do now, I would never have consented to a prenatal shot...I would have at minimum waited until after birth to have my child tested for Rh status and then perhaps have done the shot then...

I don't want to make light of the risks of sensitization. They do exist. But I do want to ensure a balanced look at all the issues surrounding rhogam. I think the decision to use it should be made with careful consideration.

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#22 of 38 Old 09-07-2008, 06:57 PM
 
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There was a very recent long and heated discussion on this very topic in the Pregnancy? forum.

Quote:
Originally Posted by japonica View Post
what would keep even those trace amounts of anti-D from crossing the placenta?
Nothing. It does cross the placenta. But the amount of immunoglobulin in Rhogam is only enough to address the minute amount of fetal blood required to cause an immune reaction in the mother. When and if it does cross the placenta, and if it does destroy fetal cells, there is not enough quantity to affect the fetus.

Quote:
Is the anti-D from the donors so different in form from the mothers'?
Yes, it is different enough. Rhogam works by hiding the fetal cells from the mother's immune system, not by triggering a subclinical immune reaction. Many sources report that this happens though destruction of fetal cells but the exact mechanism is not known. It may only coat the fetal cells to disguise them rather than destroy them outright.

Quote:
Also, then why after having a rhogam shot, do we often test positive for sensitization...is the anti-D in the shot not the same as the mother's own anti-D?
That's a good question. Even though the end product is not identical, Rhogam is made from maternal antibodies. The routine antibody screen is not sensitive enough to distinguish between real maternal antibodies and the antibodies that were used to make Rhogam, but a simple antibody ID test will easily distinguish between the two.

Quote:
Regardless of quantity, I'm just asking if they are the same substance, can the anti-D in the shot then not act the same way as the anti-D produced by sensitization?
Again, the confusion here is the assumption that they are the same substance when they are not. Maternal antibody production leads to sensitization while Rhogam prevents it.

I agree it is not foolproof, but like you I only want to provide balanced information which I find it often sorely lacking here. I don't want to make light of the risks of Rhogam, but more often than not I feel they are exaggerated on this board while the risks of sensitization are minimized.
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#23 of 38 Old 09-07-2008, 08:11 PM
 
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Both pregnancies and my miscarriage I had rhogam, had to sign like ten papers telling me that there was human blood product etc.

Kristin- Wife to J, Mommy to B (11), M-S (8), and little J (4) and J&J (7 months)
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#24 of 38 Old 09-08-2008, 01:05 AM
 
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Maternal antibody production leads to sensitization while Rhogam prevents it.
Please put a qualifier in there. Rhogam is supposed to prevent it. I was given multiple doses by trained nurses and midwives, according to package instructions, at the right times during pregnancy, in the right amounts and it failed anyway. I have "met" many women online in a support BG who also suffered from rhogam failure even when it was given as directed. Vaccine failure exists. Rhogam failure exists, even when everyone does what they are supposed to.

And just an anecdote about telling them apart (true maternal response vs. the rhogam shot), I had an OB, and two peris who did not believe I was truly sensitized. They kept writing it off a "a delayed reaction to the winrho shot" until well into the second tri when my titers started to rise. Pretty bad when professionals miss sensitization as well.

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#25 of 38 Old 09-08-2008, 09:18 AM
 
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Just thought I'd throw this out there...my midwife told me that the shot that I was taking (here in Canada) is derived from the blood products of a colony of Amish/Mormon something or other in Manitoba. Don't know if anyone has heard anything like that. She is very reputable though so I don't think that she is ill-informed. She teaches at one of the biggest midwifery schools here in Canada.
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#26 of 38 Old 09-08-2008, 10:12 AM
 
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Originally Posted by japonica View Post
Please put a qualifier in there. Rhogam is supposed to prevent it. I was given multiple doses by trained nurses and midwives, according to package instructions, at the right times during pregnancy, in the right amounts and it failed anyway. I have "met" many women online in a support BG who also suffered from rhogam failure even when it was given as directed. Vaccine failure exists. Rhogam failure exists, even when everyone does what they are supposed to.
It is extrememly rare for a woman to become sensitized if she received the reccommended dosage. However, sure I even have heard of someone who was sensitized and did receive rhogam.

However, in her case, she received the rhogam 'too late' most likely. She was pregnant (but did not know it) and discovered that she was pregnant and her baby had passed in utero. They believe that the baby had passed on a while before they discovered the pregnancy and some blood mixing occurred at that time.

So, in some cases it does happen. However, in general women need to know all of the risks and weigh them carefully when making a decision.

Without Rhogam--10-16% sensitization
With postnatal Rhogam shot--2% sensitization rate
With antenatal and postnatal Rhogam. --0.1% sensitization rate

And, of course, each woman needs to determine what her individual risks are. For women who want non-invasive births, and who want large families the 10-16% risk may be too high for them. I know someone who declined the Rhogam here whose family was one and done (she was also 41 years old when she found herself unexpectedly pregnant) so felt pretty secure that she was not having a second, both because of her age and because she'd never actually planned on having children!

In my case, my desire for a large family and non-invasive births was very important to me, I did my research and decided to have the injections. And, I'm about as crunchy as they come in terms of low intervention.

There have also developed a non-invasive test to determine the baby's RHD genotype. I know that it is expensive, however perhaps some insurance companies would cover it. It can determine at around 15 weeks. If this was done, a mom could then know if they were carrying a RH- or RH + baby and have even more information about whether or not to receive the antenatal injection.

http://www.lenetix.com/html/rhd___sry_genotyping.html

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#27 of 38 Old 09-08-2008, 10:38 AM
 
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Please put a qualifier in there. Rhogam is supposed to prevent it.
Nothing is 100% foolproof, that understanding should be inherent when you read the statement. You say it as if it rarely works. I'm sorry it didn't work for you, but that doesn't mean it's not an effective treatment most of the time.
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#28 of 38 Old 09-09-2008, 02:49 PM
 
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Originally Posted by D&S Mom View Post
Just thought I'd throw this out there...my midwife told me that the shot that I was taking (here in Canada) is derived from the blood products of a colony of Amish/Mormon something or other in Manitoba. Don't know if anyone has heard anything like that. She is very reputable though so I don't think that she is ill-informed. She teaches at one of the biggest midwifery schools here in Canada.
hehe and i heard that winrho (the win being winnipeg supposedly) used to be from nuns near winnipeg

mama to callum (april 8,07) and everett (sept 24,09) - blessed to be married to my life's love since '98. novaxnocirc.gif

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#29 of 38 Old 09-09-2008, 02:56 PM
 
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i gave the dr. an earful the next day. i waited until almost 48hrs post labour to get my winrho shot.

i said that not only did i not appreciate the attitude given that i had a preemie, but that my midwives supported my decision not to receive the winrho shot before giving birth, and that as primary health providers in ontario, that that doctor was in effect questioning the care of my midwives.

i then asked why it was that the doctors there couldn't tell me why my son was born premature (no medical reason) but that i should be questioned about not taking winrho at 28wks. then i angrily said, because you seem to have all the answers...never saw that dr again, and thankfully the rest of the staff were professional. yeah, don't mess with a woman who speaks her mind especially after a difficult birth!

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Originally Posted by applejuice View Post
It has traces of thimerasol.

It is a human blood product and as such, does carry the possibility of AIDS and CJD and other viruses and disease.

No medical treatment is risk free. There is always a balancing act with each on.



Would he have mocked you if something did happen? I would report this. You have the right to make an informed decision regarding your own health and your baby's health.

mama to callum (april 8,07) and everett (sept 24,09) - blessed to be married to my life's love since '98. novaxnocirc.gif

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#30 of 38 Old 09-09-2008, 05:44 PM - Thread Starter
 
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Thank you for all the replies, they've been very helpful.

I recognize there is a small risk in not taking the prenatal rhogam, but I think I've decided to wait for the postpartum dose. I'm already 30 weeks so I think it's too late to look into the prenatal testing for the baby's blood type...i should have had the shot already.

I'm thinking if I give the prenatal shot, I am definitely putting this baby at risk (that risk might be small, but I am still accepting to put something into my body that could negatively affect this baby).

If I don't take the prenatal rhogam, this baby won't be at risk at all. Future pregnancies might not be at risk at all (if this baby is negative), or there is a 2% chance that future children would be affected. We would like to have 1-2 more children after this one, but there is no guarantee we will get pregnant again. So I feel like we'd be putting the baby that we do have at risk for future babies that we are not guaranteed to have.

this has been such a hard decision, and I'm still not 100% sure....sometimes i think i am just overreacting by questioning a decision that is considered safe and is part of standard medical procedure. My mom is a nurse and I haven't even told her that we refused the prenatal rhogam (and I don't plan to tell her) because I think she would view us as being foolish and I don't really have any studies to cite that rhogam could be harmful.

I really wish I was just positive myself and didn't have to worry about this!!

Loving wife to DH and buddamomimg1.pngmama to DD (11/08) and DS (2/12)

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