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Anti E!!!?

(46 Posts)
babybaby3 Fri 14-Mar-08 13:51:22

When we were pregnant with our second child (who's a healthy two year old now) we found out that I have anti-E in my blood! Everybody that we tried talking too during the pregnancy didn't know much about Anti E so we are waiting for an appointment at a specialist hospital before I get pregnant again but it is all some what confusing and alienating is or has anyone got any advice for us?? Thanks!

luciemule Fri 14-Mar-08 16:58:21

Do you mean anti D?

Poledra Fri 14-Mar-08 17:04:31

I'm guessing she means Anti-E, as I have this too. I also had low levels with my second child, and now am being monitored in my third pg (due July). I'm waiting to see the foetal medicine specialist, so I only have the info that we've found out ourselves so far. There is thought to be risk of severe anaemia for the baby but it is VERY SMALL. Most patients with anti-E do not have any problems. I am getting blood samples taken at 2 weekly intervals at the moment, and have another scan booked (at 24 weeks) to check the foetal blood flow. It is likely that they will continue this level of monitoring throughout the remainder of my pg (I'm now 23 weeks). If a baby is identified as having anaemia, they may choose to deliver early, and the baby may need a blood transfusion immediately after birth. Can I emphasise though that, from our reading, this is rare. I do not want to scare you.
BTW, E is another antigen associated with the Rhesus complex, like D, but is not as risky.

Poledra Fri 14-Mar-08 17:10:00

I have to go now, and won't be back on-line again today. Try Googling Anti-E and pregnancy. as that can give you some info. You'll see that some obs don't believe that there is any problem with anti-E at all, so it is not an exact science.

babybaby3 Sun 16-Mar-08 18:35:29

Thanks Poledra - In a round about way it's nice to know that someone else is out there with the same problem, great to know that you are now on the right route for a third successful pregnancy as all that we kept being told was about the risk of miscarriage / autism etc.
Thanks again we have an appointment mid April so should know more then too. Good luck hope all goes well, keep in touch...

CrackerOfNuts Sun 16-Mar-08 18:43:21

I had anti C, with my thrid child and experianced pretty much what Poledra has just outlined.

The anti C was discovered straight away, but the levels were of no significance. However, they continued to rise, and when they got to a certain level I had to have my car trasnferred to a larger hospital with a resus unit.

I was scanned fortnightly to check for hydrops (fluid under the skin). Hydrops indicates anemia and or jaundice (can never remember which). All of my scans were always fine.

I also had blood taken very regularly.

In the end I had Ds by c-section at 37 weeks (c-section and 37 not related to the anti C).

After he was born he quickly became quite jaundiced and had phototherapy on a billibed. After a week his levels were low enough for us to go home and thankfully they continued to go down. Unfortunatly he then became anemiac for a while. He narrowly escaped a blood transfusion.

I was told not to get pregnant again, as my levels would start off where they left and could rise agaihn. However when I asked about how high levels effect subsequent babies, I was tols that they cannot tell how a baby will be effected until it happens. The levels could be sky high and baby be fine, or the levels could be low and the baby be poorly, they just cannot tell.

At the end of the day, you will be closley monitered and so shouldn't have any problems at all, and if you do encounter any, they are treatable, so do not let them scare you, it will be fine.

CrackerOfNuts Sun 16-Mar-08 18:44:35

Oh and I think anti E is less risky than anti C anyway.

babybaby3 Sun 16-Mar-08 18:55:07

Wow so many different things out there I bet the medical proffession go home with a headache ? I guess that like you stated it's hard to say what the conclusion will be until you start going down the road... just hope that it's a more straighter road with very few sharp bends!!

Poledra Sun 16-Mar-08 22:17:00

Hi there, everything I've read suggests that anti-E is less risky than anti-c (or anti-K) too.

BabiesEverywhere Sun 16-Mar-08 22:25:24

I have anti-D and anti-E, the anti-D is at a low level and the anti-E at 16 (whatever that means) and if it rises to 32 it will be a problem if the baby has a 'certain blood type'.

I am having regular blood tests but I have also got my husband's blood tested and depending on the results (in Thursday), if we can't make the 'certain blood type' baby it doesn't matter how high my levels go apparantly.

If we could of made a 'certain blood type' baby, we could have my blood tests to figure out the baby's blood type (we can't have amino etc because of the blood issue) and again the 'certain blood type' would mean no risk from high anti levels.

I hope my DH's results are good on Thursday that would be a big weight off my mind.

Good luck at the consultant, hope everything goes well for you.

babybaby3 Mon 17-Mar-08 18:24:25

Ta Poledro what sights have you been looking on?

babybaby3 Mon 17-Mar-08 18:28:28

Gosh I didn't realise that you could have both at the same time.

I hadn't even thought of having my husbands blood checked maybe I should mention it to the consultant before we go to see him.

Hope all goes well for you on Thursday, keep us posted...

CrackerOfNuts Mon 17-Mar-08 18:30:29

My partner also had to have a blood test. I am surprised they haven't asked your hubby to do that.

There is very little info around on this, which i found quite frustrating. I did find an american pregnancy site with a section on there about it though, but can't remember the name, will have a think.

babybaby3 Mon 17-Mar-08 18:49:04

Too be honest I'm not surprised we've only got this far by us pushing as I said with our second pregnancy no extra tests were conducted we just spent the whole 9months thinking of all the nightmare stories we'd read...

madmumNika Mon 17-Mar-08 22:45:51

Hi there, I too have Anti E antibodies which were discovered in my first pregnancy after the first blood test. Have they tested your partner yet for his blood antigens? Essentially your antibodies will react to blood antigen 'E' (there are a whole rake of blood antigens, E is only one of these) so if your partner has this blood antigen there is a chance your baby has it too, and if your maternal blood was to mix with the fetal blood (the placenta stops this happening directly, at least up until late in pregnancy) your blood antibodies could attack your baby's blood which can cause serious problems (called Haemolytic Disease of the Newborn- HDN. Less severe manifestations of this are jaundice). Normally your blood won't mix with your baby's unless you have a bleed e.g. from placenta praevia or trauma e.g. a bad bump to your bump, but it sometimes starts to mix in the third trimester. To check that your blood isn't reacting to the baby's blood antigen- just in case it has mixed- the docs should re-check your antibody levels usually every 4 weeks from 28 weeks. You will hear the term "antibody titre" in the blood test results- titre essentially assesses the amount of antibodies in your blood- so hopefully they will stay the same (ie. your blood is not reacting to your baby's). If the levels do start to rise they will increase monitoring by taking more frequent blood tests and possibly more scans. They usually have a threshold that once the antibodies go over calls for action (i.e. your blood is reacting to the baby's to an extent which could cause problems for the baby). In severe cases they have to do a blood transfusion in utero to your baby. BUT this is VERY rare. I have had two pregnancies, in my first my antibody levels did start to rise (my partner has the blood antigen I have antibodies to) so it seemed my blood might have been reacting with the baby's somehow (i.e. the baby had my partner's antigen E), but my antibody levels didn't reach the threshold for further action- saying that DS was born at 30 weeks due to pre-eclampsia (completely unrelated) so the antibodies didn't have much chance. He did have severe jaundice though which was in part due to the action of my antibodies on his blood.

With my second pregnancy my antibody levels didn't rise at all and I had a healthy girl at 36 weeks.

There's some more info at:
www.clinicalanswers.nhs.uk/index.cfm?question=3344

and

www.bloodindex.com/haemolytic_disease_newborn.php

Please try not to be scared by all of this, it is RARE that anti-E antibodies cause HDN but the docs are doing the correct monitoring just in case.

Good luck with the rest of your pregnancy- hope it all goes smoothly!

xx

madmumNika Mon 17-Mar-08 22:51:36

Sorry blush I was re-typing an answer I'd given before on this and only just realised that of course babybaby3 isn't actually pregnant yet! But Good Luck for getting an appointment with a consultant and making baby #3! And Good Luck to BabiesEverywhere too for the rest of your pregnancy!

BabiesEverywhere Tue 18-Mar-08 07:52:31

Thanks madmumNika for the information, it is worrying when you don't know what is going on.

babybaby3 Tue 18-Mar-08 18:47:22

Thanks madmumNika that's really helpful, yea I was told told when anti E presented in my second pregnancy I was told that it was due to my husbands antigen in my first pregnancy!!!

Poledra Thu 27-Mar-08 09:57:43

Wish me luck - off for the scan to check foetal blood flow this afternoon, and to see if my titre has risen.

BabiesEverywhere Thu 27-Mar-08 10:14:42

Good Luck Poledra.

Good news here, my titre level for Anti E has dropped from 16 to 2 and they are no longer worried about it. Plus my husband results came back and he is negative for Big E so we can't make and Big E baby. That means even if the Anti E levels rise again it can not affect the baby gringringrin I have my 20 week scan on Friday so hopeing we get good news at that one too (fingers crossed)

Poledra Thu 27-Mar-08 16:08:26

Great news on your results, BabiesEverywhere. Doing well here too - titre has stayed the same, and foetal doppler cerebral blood flow is normal. All her measurements are in the right range too. Back in 4 weeks for the same again....

babybaby3 Sun 30-Mar-08 16:27:07

Thats great news too you both, hope babieseverywhere scan went well Friday??!
Good luck poledra for 4 weeks time

Poledra Thu 24-Apr-08 22:29:28

Well, it's 4 weeks since the last post, so I've been back for another scan and titre levels. So, the titre is down to 1:16 - hurrah! However, doppler reading was higher than last time (though still in normal range) so they're wanting to scan me again in two weeks. All the baby's measurements are above average so she's doing well - 2lb 11 already. The consultant is pretty confident that she's doing just fine smile
Back in two weeks!

jennylindinha Thu 15-May-08 14:49:17

Hello all, not sure if you're still watching this thread but I just found out today that I too have Anti-E antibodies (plus some anti-C as well...) What made me mad is that the hospital never sent my 12 week blood results to me (from back in March - I am now 20w +4) and when the midwife checked my records she spotted the anitbodies results and also found out that they had not taken any further action, even though they should have!

Anyway, reading your messages above has calmed me down a bit and I'm going in for some more bloods to be taken tomorrow. Hopefully they will check DP too (I will ask them to after reading what you have had to say) and we can see what the real picture is.

There's always something to worry about isn't there?! I am totally au fait with anti-D as my mum and dad are Rh- and Rh+ respectively and she had the injection back in the 60s. Anti-everything else is news to me!!!

Thanks for your support on MN and well done Poledra on your good results, I shall follow this thread and keep you posted.

babybaby3 Sat 24-May-08 15:56:33

Hi jennylindinha

At least it's been spotted now - like the consultant told me if they are aware of it they can monitor it

Good luck

VaginaShmergina Sat 24-May-08 16:05:20

Hi I had anti e's and this was not picked up until later on in my second pregnancy. DH was tested but it was not from him but i did have a transfusion after DD was born.

Was told subsequent pregnancies could be a prob as it gets worse each time. Escaped needing transfusions and DS was fine when he was born.

I did have bleeding early on with DS and that was prob the anti e's in my blood making me reject the baby.

Good luck, you have alot of info to take in !

Poledra Sun 25-May-08 23:23:45

I forgot to come back and update didn't I? So, my titre has stayed down at 1:16, but the next scan (which was done by a different consultant as mine was on holiday) showed an upwards trend in the doppler again. All the results were still in the normal range, but starting to get towards the top, and all going up a bit from the previous one. He did say that given the kicking the baby was giving him as he tried to get the cerebral artery in scan was pretty reassuring as an anaemic baby would never have given him that much abuse! Anyway, went back the next (i.e.last) week and saw my regular consultant and the doppler has dropped back down well into the normal range smile. Titre is still 1:16, so I had another blood sample taken and they don't want to scan me again for 4 weeks. Baby is still growing well, measurements are all fine and I have had no problems myself. Now nearly at 33 weeks, so things are looking goodgrin.

jennylindinha Tue 27-May-08 13:33:00

Thanks for posting guys. I'm still waiting for my first titre results to come through and I have the 23 week scan next Tuesday (can't wait!) so fingers crossed...

Glad you have had good results Poledra and let us know how things go!

Gembel Thu 05-Jun-08 10:52:47

I am 5 weeks pregnant & have Anti E. My Titre is already 1:8 is this high for so early in my pregnancy? hmm
What is the normal antibody titre range for this stage?
It is comforting to know I am not alone. It is hard to find out much about it.
Thanks

jennylindinha Thu 05-Jun-08 17:22:17

Hi Gembel! Another anti-E person, I am not alone... I have no idea what the levels should/shouldn't be to be considered high but I am seeing the Consultant Ob tomorrow so may have an answer for you after that... Good luck with your pg and congratulations!

jennylindinha Tue 10-Jun-08 12:35:56

Hello again. Saw the Registrar on Friday (Consultant prob too busy...) and still none the wiser really! My titre didn't come out as a level, just something like 1 Neat (or nte?) and they said that it was low and just needed monitoring, so I hope it means it isn't a problem. Have more bloods to do next week and another scan booked for 31 weeks, so we get to see bibble again, yay! Keep posting Gembel and I hope things go well for you and everyone else out there. smile

Poledra Thu 12-Jun-08 16:23:39

Hi Gembel
There isn't any low or high for particular stages in pg - generally, anything less than 1:32 is considered low. It's a very inexact science; my consultant has told me that it's any changes in your titre that they are more interested in, rather than the absolute values. He has had people with titres of 1:256, and they have had no problems at all. My levels were at 1:16 all the way through my second pg, and they just took a couple of extra blood samples to keep an eye on what the levels were doing and that was it. DD2 was born 2 hours over her due date, weighed 8lb 15oz, and had no anaemia or jaundice at all.

My levels have gone back up to 1:32 from 1:16 the last time, and I have another doppler scan tomorrow (35 weeks now). Saw MW yesterday and she said she would have referred me for a scan anyway as she could not work out which way the baby is lying!

Don't let it worry you too much!

toz77 Wed 02-Jul-08 00:26:04

Hello all i am new on hear found u all by reaserching these dam antibodies.I am on baby number five at mo and are going through all the test's again u no the drill bloods 4 weekly then 2 weekly.Anyway i found what u all had to say very interesting as it is amazing how many midwifes dn't know much about this condition.I was diagnosed wv my E antibodies ect wv baby number four and it wasn't picked up till late as my bloods wn't missing u know how they do in hospitals anyway what a panic they had me in.They were like headless chickens .I had big neonatal warning stickers all over my notes ect.I have reasearched this very thouroughly and found various diff opinions on the subject.My advice to anyone concerned is reasearch as much as possible n dn't let the doc's fob u off as this condition seems to be on the uprise.They tell u it's very rare but how many ppl are on hear ect wv'e it .If it were that rare we wdn't have a big topic board like this would we.HA HA

Poledra Mon 07-Jul-08 21:56:25

Just in case anyone is still watching, I am now 38+5 and had my final scan today. Levels have stayed at 1:32 for the last 2 samples. Doppler was fine and all the baby's measurements are average or slightly above. Foetal movements are <ahem> vigorous, shall we say?
So, no more scans or samples. The only remaining issue is that they do not want me to go overdue, so if I have not gone into spontaneous labour by next Tues (due on Wed), I have an appt to go in for a sweep, and to discuss the possiblity of induction.
Hope everything is going well with everyone else.

Pruners Mon 07-Jul-08 22:05:23

Message withdrawn

missingbaby Tue 08-Jul-08 20:26:46

Anti-E has been the most difficult search that I have done. I never even heard of the protein until my pregnancy. My husband and I had an awful way of finding out about it. I lost our son at 36 weeks to HDN. We were unaware that I even had titres building up. My dr. tested my blood at 7.5 wks for RH. I am neg. for Rh but my E was at a ratio of 1:2 and 1:1. I still uncertain but talking to several other Drs this is common at that range to not follow????? Since then we had to go to a specialty hospital. THe Drs there said for the next pregnancy, I will have to have an amnio at 18 weeks to check the babies blood type and then IF the baby is E+ I will have to travel to this hospital to have the cerebral artery dobblers done. If the baby shows signs of anmea setting in, I will have to go every week. IF the baby is showing a pattern of increase then I will I have to go for weekly transfusions in vitro. Every time a procedure is done in the womb, there is a 1% chance of the baby not surviving. So if we have 10 procedures done before birth including the amnio then the baby has a 90% chance of survival. My husband is really nervous about trying again. We have one child that is healthy and beautiful. But I am unsure of what to do. WHile there is hope. I think it is great that all of you are aware of this probelem so that you can make sure your drs. and mw are checking you. It is amazing how many things are out there and you just feel cheated because the drs. should know what to do and dont.

missingbaby Tue 08-Jul-08 20:28:14

Sorry made a mistake on my last thread. I am Rh postive but negative for E.

madmarriedNika Wed 09-Jul-08 20:59:50

missingbaby- I am so so sorry for your loss. What a horrendous shock

If you are negative for E I assume your Rh E genes are double 'lower case' e (e e).

Have they tested your DH? If he is double 'capital' E (E E) then any baby will sadly also carry 1 capital E and therefore your body (well, blood actually) could still recognise this as "alien" and start attacking the baby's blood cells- causing anaemia. BUT if your DH is E e then you have only a 50% chance of having the antigen your blood reacts to (E).

Even if a baby does carry the 'E' that your blood reacts to, it does not always react, hence why they start of by monitoring your antibody titre levels and look on scans for fetal hydrops (accumulation of fluid in 2 or more fetal compartments, including the subcutaneous tissue, pleura, pericardium, or in the abdomen, which is also known as ascites) or signs of anaemia. Generally the maternal blood doesn't mix with the baby's blood until the second half of the pregnancy, usually not until the 3rd trimester (unless an accident e.g. severe bump) could cuase mixing earlier- so until that time any baby is pretty safe. That's why they really step up monitoring later in pregnancy.

If I was in your shoes (which in a way I am, but I only have a 1 in 2 chance of carrying a baby with the antigen I react to- as DH is Ee- and neither my DCs have suffered from HDN although they think DS was heading that way, but was born for other reasons at 30 weeks before my blood could start causing real probs for him- and he's now aboslutely fine thankfully) I would go for it again, as their is a chance you will not need intrauterine blood transfusions and even if you do like you said you still have a 90% chance of carrying the baby to term. The stress of it all will be hard but if you're fully prepared for all the testing etc. you'll need I would go for it, or else you might regret never trying again down the line.

Wishing you all the luck in the world xxxx

madmarriedNika Wed 09-Jul-08 21:03:45

Sorry not sure this paragraph I just wrote reads clearly:
"Have they tested your DH? If he is double 'capital' E (E E) then any baby will sadly also carry 1 capital E and therefore your body (well, blood actually) could still recognise this as "alien" and start attacking the baby's blood cells- causing anaemia. BUT if your DH is E e then you have only a 50% chance of having the antigen your blood reacts to (E)."
RE the last sentence I mean if your DH is 'Ee' then you have only a 50% chance of having a baby with the antigen your blood reacts to (E)."

Genetically, ee (you) x Ee (your DH, hopefully) = 50% chance of (baby with ee & 50% chance of Ee. You want the first if possible not that you can choose... But at least there's a 50% chance of this- then your blood won't react at all (happy days)

missingbaby Fri 11-Jul-08 20:52:04

Thanks madmarriedNika for all of the information. I have actually found a few great sites lately thanks to the help of some friends. I also typed in in utero blood transfusions and found some great sites. I don't remember them off hand though. My husband and I have talked and we will start trying again. I know that I would not be completely filled without more children. We still need to check his blood for phenotypes to determine if he EE or Ee. Hopefully he is the second but I am prepared for the testing if he is EE because Ee still leaves a 50% chance I have to go through the testing anyway. The only downer to the whole thing is the hospital is 2 hours away and then I would have to stay the night if they do have to do transfusion. That is alot of time away from the family, driving and hate to say gas money. In the end with a healthy result, it will definitely be worth.
Thanks again.

Poledra Thu 31-Jul-08 16:54:08

Orlaith Grace born on 18 July weighing a healthy 8lb 11oz following induction (full story here). She developed haemolytic jaundice and spent 5 days in SCBU under triple light therapy. Got out of hospital 7 days after birth , having weekly monitoring to make sure she does not develop haemolytic anaemia. This is all considered to be due to the anti-E thing. So far, things are looking OK, though I did have some very shaky moments when she was in SCBU. How's everyone else doing?

jennylindinha Fri 15-Aug-08 23:17:05

Hi Poledra, only just seen your message as I'd lost the thread off my watch list... Congratulations on the birth of Orla smile! Sorry to hear about the jaundice but I'm glad things are getting better and I hope everything is ok now.

I've had some good news - my antibodies totally disappeared! They must not be related to this pregnancy. I've had a couple of extra scans and there are no signs of anaemia, so all looks fine now. Fingers crossed and only 6 weeks to go! Had my anti-D at 28 weeks though - don't want to risk getting any more...

Hope everyone else is doing ok.

Poledra Fri 17-Oct-08 13:34:56

In case anyone is still watching this thread, my baby was discharged from the paediatricians on Wed as all her blood counts are normal grin She has to comtinue the folic acid until weaned buth otherwise, we're all clear.
Hope things are going as well for the rest of you.

Sadielove Sat 08-Sep-12 07:55:46

Realise this is a very old thread but if anyone still watching it - any help/info/advice would be appreciated....I'm 28wks preg and my Anti E results have just come back - they have shot up from 1:8 to 1:256 :-( Anyone have levels this high? What was outcome with baby? Thank you .

tootiredmum Mon 17-Sep-12 19:49:18

Hi Sadielove. I found out on Friday that I have anti-E antibodies too. I am only 10 weeks pregnant. My partner and I went in for blood tests today, to check his blood type and my titres. I'm afraid I don't know much about the levels but I noticed that 'Poledra' had mentioned something in her post dated 12th June which may reassure you that you may not need to worry. How are you getting on now? I also read a paper on a study of women with anti-E antibodies. One of the conclusions was that there appeared to be a huge disparity between titres and severity of disease (HDN). Fingers crossed that everything is ok for you.

Poledra Wed 03-Oct-12 13:42:40

Well, hellloooo! This is a blast from the past!

Sadie, from what I read at the time, the titre levels do not necessarily correspond to the severity of disease. The change in your titre level is what would be causing the concern, and I would expect your doctors to put you onto a more intensive monitoring schedule, similar to mine (blood tests and scan at 4 weekly or less intervals). The Foetal Medicine consultants I saw (and they are at a leading teaching hospital in the UK) said the worst case was that they would perform an intra-uterine blood tranfusion if they detected anaemia in the foetus, but that this was the absolute worst case and they had only had to do it once in the previous 10 years (so 14 yeears now!). As I said before, they had seen women with titres of 1:256 whose babies were absoutely fine. The highest my titre reached was 1:32 but DD3 did indeed have quite severe HDN after she was born. It is eminently treatable, though, with light therapy as indeed DD3's case or, in the worst case, a complete exchange transfusion for the baby. I know that 'anecdote' does not equal 'data, my oldest sister had a complete exchange transfusion at 2 days old (and she's now a healthy cough46cough ) and DD3 had severe HDN, was in SCBU under light therapy for 5 days and I waved her off to her first day at school this September.

Anything else you want to know, just ask! Oh, and congratulations to both of you on your pregnancies smile

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