The Big "E"

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When my doctor told me I had developed E antibodies, he gave me VERY little information. The more questions I asked, the more he repeated the same answers, in the same vague, difficult to understand way. When I left, I wasn't sure if what I had was a disease, or what, so I was a little panicked. All he told me was that I'd probably have to go to a Maternal Fetal Medicine specialist, and the baby would probably have to be delivered premature.

Naturally, I went home and did my own research. There wasn't much out there. I'll give you a synopsis of what I learned, but I'm not a doctor, so cut me some slack. ;-) If you know of anything I got wrong and have a reputable website online to refer me to, please let me know, and I'll be happy to make needed corrections. Here is what I found out:

Our blood type (A, B, AB, and O) are based on the antigens in our blood. Type A has A antigens in it, type B has B antigens in it, etc. If someone who has A blood is given a transfusion containing type B blood, that person's type A blood will see the B antigens in the new blood as foreign, and therefore will probably rally to fight off these new antigens by producing antibodies to attack them. This is why you need to have a matching blood type given to you in a transfusion.

There are other antigens out there. Basically, these antigens are proteins that are attached to your blood cells. As far as E antigens go (and there are big E and little e antigens, each are different), 98 % of the population have ee, while the rest have either EE or Ee. If a mother is ee, and her husband is ee, there is no problem. But if the father is Ee, there is a 50% chance he will pass on the E antigen to his children. If he is EE, there is a 100% chance he will pass it on to his children.

If an ee mother is pregnant with a baby who has E antigens, and their blood somehow mixes during pregnancy or birth, the mother's blood will detect the E antigens, and create E antibodies to fight off the foreign antigens. This isn't a problem when it happens during a first pregnancy. The problem occurs to subsequent pregnancies. If the mother has another baby with E antigens, the mother's blood will recognize the E antigens, and will make even more antibodies to fight off the antigens. Basically, the mother's blood will try to attack and "kill" the baby's blood. If the level of antibodies gets too high, it can be very dangerous to the baby. The baby could die.

There are two ways to be exposed to these antigens. One, as just described, is to be exposed to it by the father, via the baby. The other is if you get a blood transfusion. They're supposed to check blood for antigens, and the blood can be "cleaned" of the antigens before it is given. But I guess mistakes happen, and you can still be exposed to these antigens through transfused blood. The good thing is, if you get it from a transfusion, you can have your husband's blood tested for a simple antibody screening. If your husband is ee, you are in the clear. Your child will not have the E antigen, and therefore your blood will not fight your baby's. As I mentioned before, if your husband is EE, your child will definitely have the E antigen, and if he is Ee, your child might have the E antigen.

If your baby is suspected to have the E antigen, your blood will be tested at least once a month in the beginning of your pregnancy, and more often if the titer levels go up or as the pregnancy gets further along. If the levels rise past a certain point, they might have to do things such as a cordocentesis or amniocentesis. I believe I also read that a intrauterine blood transfusion for the baby may be necessary. If the situation worsens, the baby will need to be delivered early. My doctor told me that they usually like to deliver the babies at 32-36 weeks. 36 weeks isn't too bad, but 32 weeks is pretty early. He can't give me statistics on how often premature deliveries are done, because usually patients with this condition go to a perinatologist, and he doesn't always get feedback on the outcome.

There are other antigens out there that will cause similar problems. The most common one is antigen D. This is the one that is a problem for moms who are Rh-. It is much more dangerous and can cause more problems. However, there is a solution that usually works for D antibodies. Doctors inject the mother with RhoGam, which are D antibodies but they are too big to cross the placental barrier. It fools the mother's blood into thinking that there is no reason to produce more antibodies, because there are already plenty of antibodies to "do the job". Since the injected antibodies are too big to cross the placental barrier, they don't harm the baby. This usually takes care of the problem. There is no injection for mothers with E antibodies, and I don't think there are for the other problematic antibodies out there, like C, etc. Probably because the others are much more rare, and therefore are not profitable enough to bother researching or manufacturing a treatment.

I will be having my husband's blood tested, although it is likely I got exposed to the antigens from him, via my last baby. The antibodies have never been detected in my blood during previous pregnancies, so either I got them from the last baby, or I got a blood transfusion during the last c-section or my hernia operation. I don't remember getting blood, and my doctor says usually they have you sign something informing you of the risks of transfusion and giving you things to look out for. I always read EVERYTHING I sign, so it's unlikely I had a transfusion. But I'd like my husband to be tested just the same. Since antibody screening is pretty routine during pregnancy blood workups, it is unlikely that I had E antibodies before now. Which probably means my husband is Ee, and didn't pass the antigens on to the first three children.

As annoying and worrisome as this complication is, I know that if my husband has E antigens, then I'm blessed that this hasn't happened sooner. Although you know this is just one more thing that the doctors will try to use against me in the future to coerce me to sterilize myself. Sorry docs, I'm not a cat, and that ain't gonna happen! Of course, the first thing my mother says is "see, I knew something like this would happen...your body just can't take all these pregnancies!" My response was "um, mom, didn't you listen to anything I said? This is something that occurred naturally, and could have happened with the first baby. And it might not even cause any problems. There was no way to prevent it." She acts like I broke myself, lol.

I suppose I could have made my husband submit to several health exams and blood screenings to make sure he was "compatible". I can just see it now... "Sorry dear, I love you and I believe God sent you to me because you are the man that will be a wonderful husband and father and lead me and my future children to Heaven...but God made a mistake and gave you the wrong proteins in your blood, so I'm afraid we'll have to call the whole thing off." ROFL!! I mean, I was picky, but I wasn't THAT picky!

I hope you have enjoyed today's lesson on antigens and antibodies. Hey, you could turn this into a homeschooling lesson! Of course you'll have to come up with your own illustrations. ;-) You could make some E antigen and antibody puppets, and make them have a little puppet fight!

14 Responses to "The Big "E""

KJ Says :
1:20 PM

I will keep you in my prayers. :-)

Anonymous Says :
2:35 PM

Hi there - how did things go for you with this? I found this website when looking for information about this as I just found out I have this problem with my pregnancy, so I am curious how things worked out for you & your baby....
~jv

Mommaroo2 Says :
3:28 AM

JV,

Everything went fine. They made a big deal about it (and it can be a big deal) but it turned out to not be an issue for me. They monitored my levels throughout the pregnancy. The levels never went up much, and in fact went down a little bit towards the end. One of these days, I'll have my husband get tested so we can find out exactly what his antigens are...EE or Ee. I suspect Ee. Anyway, good luck with your birth, I hope yours goes just as well!

Anonymous Says :
3:47 PM

Thanks! We just got my husband tested and are waiting to hear back. Sounds like most of the time it's not a big deal but could be? That's good to hear.
~jv

Anonymous Says :
11:25 AM

Thanks for the information. I recently tested positive for Big E with this my third pregnancy. We are waiting for the approval for my husband to be tested (yea, HMO's). But I appreciate your information.

Erika

Elliott Family Says :
9:07 AM

I am researching this topic because I am trying to remind myself of the risks that I would be taking if I were to get pregnant again. I miscarried 4 years ago and they found out I had the anti-E antibody. They said it didn't cause the miscarriage because it was too early for it to affect the baby. My second child did have the E. It was nerve racking and I had been told I would probably deliver early. My titers went up around 28 weeks. At 32 weeks they went down a bit. I ended up delivering her a week and a half late and she didn't even have problems with jaundice. What a blessing! I know that having another child with E would cause my body to attack the baby more strongly. My husband was tested, but they didn't tell me if it was EE or Ee. They said I would have to have his parents tested for it to know, and that it was extremely unlikely that he was EE. Anyway, good to hear that all went well for you. I remember being very worried about this during my pregnancy. I think I would be doubly worried the next time.

Mommaroo2 Says :
8:13 PM

Elliott Family,

I'm really glad you had a good outcome to your pregnancy. I need to remind my perinatologist to check my titers, because I don't think they've been doing it yet. It's really important, because if they catch it right away, they can monitor it and take the baby early if necessary. It can be a dangerous situation if it's not caught. Personally, if I came up with a high level this pregnancy, it wouldn't prevent me from another pregnancy. It would just make me more vigilant. I would probably be more paranoid about it, but I feel that every life that God gives us is so essential and special, and has a great purpose. Even if I lost the baby (which would devastate me), I wouldn't regret it, because I think even a baby that never makes it outside the womb has a purpose. I can't tell others what they should do, but that's just my take on it. I would prepare for the worst and hope for the best. Which is pretty much what I'm doing with this whole aneurysm thing right now. The aneurysm is much more of a concern for me (since it could kill me and the baby both), but I'm just trusting God and taking it one day at a time. And, of course, staying on top of my condition and watching the doctors like a hawk. ;-) NEVER trust your doctors to tell you everything--get the results of every test and read them for yourself. If I had read my echo reports years ago, I would have found out about my aneurysm and gotten it fixed between pregnancies. But that's another rant for another time. ;-)

Mommaroo2 Says :
8:16 PM

P.S. Thanks for visiting, I hope you found my post helpful. I know there's not a lot of info out there, and I appreciate you sharing. I think it can help other readers to hear that they aren't alone with this situation.

Anonymous Says :
8:15 AM

I just found out that I was exposed to the Big E antibodies during my blood transfusion for my c-section. We had my husband tested yesterday and he is positive for the Big E. I'm extremely worried and there is just no info out there on this subject. My doctor acts like no big deal but I can't help but worry. I already have blood clotting problems and have to take shots each day. I'm not sure how much more I can handle.

Anonymous Says :
2:54 PM

Thank you for this. I had very low levels detected so my midwife refered me to a specialist since she had never dealt with this. I want a natural birth and he was all about genetic testing and spent more time on that than on the anti-E subject so I still left slightly confused. On top of that, my hubby's dr. didn't do the right test, so we don't know if he is EE or Ee and we weren't sure how significant this was to determine. It's nice you but this info in terms us non-medically trained people can understand.

Mommaroo2 Says :
6:42 PM

Anonymous,

It sounds like you're going through a lot. Don't let yourself worry too much about this. I just had my second child since I developed the big E antibodies, and she was fine, too. My levels never went very high. I'm not saying it's not a concern, but it's very possible you won't have any problem. The important thing is that you know about it, and can watch it. I had to have a transfusion after this c-section, because I was anemic. So now, when I get pregnant again, I'll be sure to ask my doctor to run a panel to see if I've been exposed to any other new antigens. I sure hope not! But like I said, don't worry unless your titers go up. Until then, there's no reason to stress yourself.

Anonymous Says :
1:07 PM

My son was born premature in 1978. It was discovered that he had the big E factor, eventually was taken to a children's hospital and had to have his blood exchanged, not transfused. He's a whopping 6'3" healthy kid now, but we were very worried back then. (He was my first pregnancy and I had no others.)

He soon will be a father for the first time and he is checking on the big E factor relevance. I can't believe that still today there is nothing really good out there about this situation. But I found your information helpful and am passing it along to him.

angelrobbiesmom Says :
3:07 PM

This cond scared me so because they really didn't understand it or they tried but they didn't make sense. I'm so happy see this Blog. It explains it so well what I went through during my fourth pregnancy, which sadly ended due to cord accident. Nothing,to do with the "Big E".
I wish they had induced me early because my levels were going up and he was growing slowly. I was at 36 weeks when they told me he was improving but two weeks later, I lost him. They were going to deliever him early.The levels were just up and down month or so. We weren't getting a clear answers but every week to drs to get bld work and in hosp for ultrasounds.

They had to send my bld work to another province to be checked out. I know this a rare form of antibodies. I was told I cannot give bld etc.
If I do try again, they will be keeping an eye on more because of the history of what happen to me .
If you like to contact me my email is: natashiahope@gmail.com.

Again, thank- you for sharing your stories. Your stories helped explain it so clearly.

Mommaroo2 Says :
3:40 PM

I've never been told I couldn't give blood, so I'll have to ask my doc about that. I do know that I was able to receive blood after my last c-section as well as during my heart surgery. They didn't say how hard it was to find a match (luckily I'm a common blood type, except for the big E). They did mention, however, that they were making extra sure before the heart surgery to type my blood and find a match in the 48 hour window they have before surgery, and I was cautioned NOT to take off the blood match bracelet they gave me, because they'd have to re-do it without the identifying bracelet, and my blood would take hours to find a match, which would put off my surgery.

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