Rare antibodies in blood

[Carwash3]

Hi

I'm new on here but hoping some other women might have experience of this. I'm 10 weeks 5 days pregnant through IVF. Yesterday I got a call from midwife to tell me I need to have one of the 10 week blood test redone as they have been told a rare antibody has been found and they need to check and establish what it is. They gave me no clue what it could be apart from that it wasn't linked to my negative D blood type. They said they hadn't been told much about what it could be. They also said not to worry too much as often these blood test results are something and nothing but they had to check in case of possible infection of baby and I might need monitoring. Of course I'm really worried esp as they were very vague. From what I can see about antibodies it could be a few things some of which more harmful than others. Anyone had any experience ? Thanks in advance

[plimsolls]

I don't have the same experience but just yesterday I was told something similar about my baby daughter's blood. It came up during some fairly routine monitoring blood tests.

I had a similar problem to you in that the explanation was quite vague, plus blood group and cell type and antibody stuff is I think hard for them to explain simply.

It wa a something like an unusual protein or antibody attached to the surface of her red blood cells.

Overall, the doctor I spoke to said that there were no other indications of an issue so there was nothing to worry about and it was just one of those things.

Am a bit about it but perhaps your case is something similar....

[flumpybear]

Hi - have they done a group and save? I had this when I was about to go for my section with my second child. For me they biked over bloods in case I needed a transfusion - I didn't, but only two pack were available in the country as it's rare - I'd say try to get all the info you need but also perhaps change the title to calling haematologists to get some professional advice perhaps
Think mine was s antigen or antibodies .... can't recall now

[Carwash3]

Thanks that's good to know others have similar experiences. Just seen midwife as she came round to take my blood. Now they are saying it most likely is anti bodies because of my d negative status even though it doesn't usually impact a first pregnancy! Anyway she said few times very unlikely to be anything to worry about worst case scenario is baby might have to have blood transfusion but they can manage this condition. All very confusing but I guess I have to trust what they are saying !

[INeedNewShoes]

I've got Anti-S which I think is quite rare. The titre (level) is important. At the moment my titre is very low so it's no concern at all. Later in pregnancy they'll monitor my baby for anaemia as that is the risk associated with my particular antibody.

Try not to worry too much. Although they're rare most of them are not too much of a problem from what I've read.

[Carwash3]

Hi thanks a lot it really helps to hear from others in the same boat glad yours turned out to be nothing to worry about

[flumpybear]

FWIW There were no problems in the end with me or with my little boy, he's 4 now - they took bloods twice a day when he was jaundice after birth but my two both suffered this with BF anyway so their bilirubin levels dropped as expected - we were out with five days - similar situation with DD three years before

[Carwash3]

That's good to know. I think they are getting a more sophisticated analysis of my blood before anything else. I think I'm so nervous because it's our first and we struggled to conceive hopefully I will become calmer

[Desmondo2016]

I've had 3 anti k (kel) affected pregnancies out of my 4 pregnancies. Baby 1 not affected, believed i built up the antibodies when my blood mingled with his during delivery. Baby 2 not affected as my antibody levels did not reach dangerous levels . Baby 3 lost at 20 weeks for unrelated issues. Baby #4 was highly medically managed through pregnancy and had 4 intrauterine transfusions between 22 and 33 weeks and was born healthy at 35 requiring a further 2 post birth transfusions. Home on day 5 with no health issues whatsoever. The problems will get worse with each subsequent pregnancy. Basically in layman terms my blood attacked babies blood causing baby to become anaemic. His levels of anaemia were measured by scanning the cord blood flow twice weekly from 16 weeks. The faster the flow the thinner the blood the higher the level of anaemia. When it reached a certain risk level I'd be sent to a specialist hospital 2 hours away and the transfusion would be carried out. The transfusions get more risky as the pregnancy progresses. My first 4 were straight forward. My last one at 34 weeks failed and triggered Labour which they managed to stop. I was too traumatised ti attempt the transfusion again so was induced a few days later and ultimately had an emcs. However all was well that ended well. I'm now 36 weeks pregnant again with baby 4 (pregnancy 5, pregnancy 3 was lost at 20 week not related to antibodies). Different father this time and we had his blood tested before ttc so we knew there would be no antibody issues as we had been told it would probably be too risky to go through another Kel affected pregnancy. I hope this is of some use. I believe the effects are much the same regardless of the type of antibody. Several people will think they have this due to rhesus negative factor but the difference is there is an antidote to that (the anti d injection) and there isn't for the others. Disclaimer... I am not a medical professional so this is my memory and experience (12 years since my last Kel pregnancy!l

[Desmondo2016]

Feel free to PM me if you want btw.

[BeccaSays]

I'm waiting on results for anti-k (kel), so thanks for the info Desmondo. Anti bodies were found while running blood tests for an anti d injection I needed last Monday (o rh neg). Had to have more bloods on Tuesday and they're being screened in London. Hoping to get the results back tomorrow along with GTT. It's my first baby but I've had some unexplained bleeds so might be why I'm now producing these anti bodies

[Faultyscales]

I too had anti kell antibodies caused by my son (2nd child) inheriting the kell from my husband and mixing with my blood like Desmondo. Was picked up at first blood test then 12 week scan showed we were having twins. Also had twice weekly scans but on the brain artery not the cord.

Was told it was 50/50 chance of either baby inheriting the kell blood and therefore being attacked by the antibodies. 25% chance of neither or both being affected. We beat the odds and they both inherited it and both became severely anaemic. Twin 2 had 3 transfusions and twin 1 had 2. Last transfusion was at 31wks then plan was to deliver at 33wks but babies had other ideas and came by emcs at 31+4. Due to prematurity we were in nicu for 5 weeks and both were extremely jaundiced from the anaemia but recovered well with no lasting effects.

Specialist told us they perform transfusions around once a day, but only see twins affected around once a year, so they can certainly help you if you are affected. As Desmondo says they treat various antibodies like this except rhesus negative people. Hope that helps. Dr google provided very few stories when I was going through it!

[Faultyscales]

Also, just remembered if you do have antibodies they can do a fetal mapping thing now where they take blood from you to find out about baby. This will tell you in advance if baby will be affected without having to have an amnio. We couldnt have it as they wouldnt have been able to differentiate between each twin so wouldn't have told us much!

[CatsCantFlyFast]

I've recently had dd2 with anti d, c and G antibodies. I had titres done weekly, and fortnightly then weekly scans because my titres were so high. At 33+6 my consultant opted for an emergency section (instead of interuterine transfusions) and she was born requiring a full blood transfusion, 5 days in NICU and a further few days in scbu. Nice have a document you can find online "management of red cell antibodies in pregnancy" (or a similar title) which is helpful reference

[SteppingOnToes]

Try not to worry too much as the vast majority of antibodies don't affect the baby and it is fairly easy to select blood free of the antigen for transfusion. The most important thing is to remind them on admission that you have antibodies and the laboratory will automatically get 2 units of blood ready for delivery so there will be absolutely no delay if you need blood.

They can also do foetal blood testing now (for clinically significant antibodies) using a sample of your own blood to identify if the baby would be affected - this can put your mind at rest, or allow the baby to be properly managed sooner into the pregnancy.

The problem with antibodies in pregnancy is that other that D, most midwives don't fully understand them.

[SteppingOnToes]

PM me if you want any questions answering - I work in blood transfusion.

[Faultyscales]

Could have done with you two years ago steppingontoes.....you're not wrong about the midwives

[SteppingOnToes]

Could have done with you two years ago steppingontoes.....you're not wrong about the midwives sad - the thing is that they are so rare and so infrequent, and there are so many different types, that they can't be expected to know about them all. Part of my job is to give interpretation of results and the likelihood that the baby is effected so that the medical side can do their bit.

[AbbeyRoadCrossing]

Hi OP
I had anti c, anti E and anti k in my second pregnancy. As I'm a positive blood group it's thought I picked them up from blood transfusion.

I had blood tests every 2 weeks in pregnancy and the consultant did a scan to check baby. My levels nearly hit the level they get concerned about but then dropped. I had DD by elcs at 39 weeks so that my blood, her blood and a certain paediatrician could be there.
After all that she was completely fine apart from jaundice we had to keep an eye on.

Like others no one seemed to have a clue about it and keep suggesting anti d when I'm a positive blood group

Have been trying to find information on any testing that could be done before another pregnancy. If it's a very bad idea we won't but no one seems to know

All the best OP. They will look after you and monitor it. I became an expert in what colour form and test tube tops they had to send off by the end of it!

[Monkey29]

Hi OP, I hope your pregnancy is going well now and that you have been more informed as to what antibody/antibodies you have.
I had Anti E antibodies detected on my 2nd pregnancy. My understanding of it was that some antibodies are worse than others. The E antibody usually does not cause much problems but it can. I was also told that there are a lot more antibodies being detected now as screening techniques are much better. My husband has the E antigen on his red cells. I believe my blood must have mixed with my daughters blood sometime during my first pregnancy/labour and I then developed the E antibody. This can happen if you have ever had blood transfusion either. For me my antibody levels were monitored during my pregnancy but they were always too low to titre and actually by the end of my second pregnancy no antibody was detected at all. They did take cord blood at time of delivery and also did 2/3 blood tests on baby to check bilirubin levels just incase (she was a bit jaundiced but I was breastfeeding). Just wanted to give you a good story. The majority of times with antibodies there is no harm to baby but it's important to have levels checked regularly.
Best of luck

[choccybiscuit]

I find this all very confusing. I've been told I have pan reactive antibodies which means I react to all antibodies? Has anyone heard of this before?

[BentleyBelly]

Hi everyone. I have anti-M antibodies and am awaiting my titre from Bristol...anyone know how long it takes to hear back from them? @choccybiscuit how are you? Have you found out any more about your antibodies?

[Clj148]

Hi @choccybiscuit I’m not sure if you’ll ever pick this up as it is 3 years later! I’m 23 weeks pregnant and have been told I also have pan reactive antibodies. I was just wondering how it had been managed in your case? I get the feeling they don’t really know what to do with me!! Any advice would be really appreciated!