Anti E!!!?

[babybaby3]

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!

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 . 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 good.

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!

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

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!

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.

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!

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

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 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.

Message withdrawn

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.

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

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

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)

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.

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?

Hi Poledra, only just seen your message as I'd lost the thread off my watch list... Congratulations on the birth of Orla ! 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.

In case anyone is still watching this thread, my baby was discharged from the paediatricians on Wed as all her blood counts are normal 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.

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 .

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.

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

Hello, has anyone experienced Anti-E antibodies come back from blood test in pregnancy? I'm panicking about what this means. Any advice please? Midwife hasn't given me much info. Thank you. Xx