anti c antibodies and HDN

[duckduck]

Hello..... new to this but trawling around for info on anti c antibodies, HDN etc. I had a mildly alarming meeting with Big Clever Doctor and have come away with high possibility of in utero blood transfusions if anaemia sets in in bub... antibody levels have rocketed suddenly (though am only 11+3). Last two babies unaffected and antibodies developed after transfusion post delivery of baby 1 from placenta praevia haemorrage. Am a bit spooked right now so was just wondering if anyone else is in similar situation or is happily holding newborn delight having been through the same stuff???? Looking at the web has only left me sleepless and confused!!!

Thank you xxxxxxxx

Sorry, I don't have an answer I was just wondering what it was? I had Placenta previa haemorrage in last pg too. Im now 21 weeks PG and have never heard of this, what is it?

Not sure I can help much but I have anti E antibodies, which were detected in my first pregnancy (from a blood transfusion given to me as a child). With my firstborn the level did start to rise notably in the second trimester, but hadn't reached a threshold where they get seriously concerned, and there was no sign of HDN - however I developed severe pre-eclampsia (HELLP syndrome) and DS was delivered by emcs at 30wks- and found to be anaemic and jaundiced due most probably to my antibodies. He needed phototherapy and blood transfusions- but would probably have needed these due to prematurity anyhow, and was in SCBU 8 wks due to his gestation rather than issues from antibodies. No medic could tell me if he was on the way to developing proper HDN and we'll never know. FWIW DS is a healthy and happy 4yo now!

With DC2, my antibody levels were well monitored and thankfully didn't rise, and all was fine. Am now expecting #3 and so far so good, next test is in 3 weeks when I'll be 28wks gone.

I have also read (and informed by docs) that in worst case situations where HDN develops they can give blood transfusions in utero, but this is rare and often antibody levels only get to a dangerous level in third trimester and sometimes not until very close to full term, if at all.

I am assuming they will be repeating your blood tests frequently and offering you extra scans to check on LO?
Good luck- hope someone who has been through similar can offer more insight.

bevlin you only develop antibodies if you were given a blood transfusion with a blood type where a rhesus antigen was one you react to- this isn't the normal Rhesus D as that is well tested/screened for so they don't give the wrong blood type- but there are other Rhesus antigens which sometimes can cause issues. I was unaware I had any rhesus antibodies following my blood transfusions until my blood was tested specifically for these when pregnant. They are then only an issue during pregnancy if the baby has the antigen you have antibodies to (i.e. inherited from the father who may have the antigen you react to) and somehow there is maternal foetal blood mixing (usually kept seperate by placenta, but sometimes due to injury or in the third trimester they mix, so your blood "detects" that the baby's blood differs from yours in rhesus antigen terms). Not sure that makes much sense sorry am v tired today!!

Hello! thank you for quick responses.... Bevlin - I had huge bleed which ended in caesar at 37 weeks so DS arrived safe and sound, however I needed 4u blood and after that developed anti c antibodies. There seem to be masses of different antibodies and I'm not sure if it was my body reacting to the new blood which created antibodies or there were undetected antibodies in the blood - I'm not enough of a medic and was so post baby delirious I never really asked. The antibodies were not detected until just before baby 2 was born - literally 2 days before I went in for elective cs, so didn't cause a problem. Similarly in baby 3 the antibody levels didn't rise so no probs there and he was delivered by elective cs at 38 weeks. I had a uterine repair done as the caesar with baby 1 due to placenta praevia was a bit of a mess so have never been allowed to attempt natural birth. So - the antibodies came from the transfusion and only now seem to be causing a stink.

Thank you JumpingJ - yes, have 12 week scan on Friday and then scans every 3 weeks with full bloods to test titer levels, I think the concern is the leap in levels at this stage and the doc mentioned a high likelihood of levels continuing to raise therefore higher poss of HDN - but docs can be quite "worse case senario" so Im finger crossing that its that and hope levels dont rise - probably a stupid question but is there anything you can do to stop levels raising - diet/stress/vits etc etc?

crikey - tired or not that is the most clear and helpful explanation I have ever heard re blood grouping, antibodies etc on your message to Bevin, not even the midwives came up with that kind of info so thankyou JJ, I wish I had hit this site earlier, would have saved trawling round strange US medical sites!

duckduck I'm afraid there is nothing you can do at all, which is the most frustrating thing about it! I think once you start to feel movements they will probably advise you to keep an eye on those (which I'm sure you'd do anyhow). It sounds like if your levels have already risen that your blood has somehow mixed with that of the baby's, so now it's just unfortunately a wait and see game to see how much your body reacts to it, and over what timescale. From what I read as scary as they sound in utero blood transfusions, should you need them, are very successful at helping the baby reach term and keeping anaemia in check, but does of course involve a lot of monitoring and hospital trips...

Really hope the levels don't rise too much more, or at least not until you're into the 3rd trimester. Sounds like your medical team will be watching closely anyhow, which is the main thing. Good luck xx

Thank you Duckduck and JJfish, I was clueless. I didn't get a transfusion so obviously didn't bleed too heavily. Si is this your 3rd or 4th Duck Duck?

4th and only had praevia with No 1 - despite concerns that placenta in subsequent pgs would then attach to previous scarring, so fingers crossed its ok this time too. Hope all well with you this time round too - pp wasn't much fun - was in hosp for 7 weeks pre-delivery which felt like being in Tenko! x

Hi, I also had anti c antibodies in my last pregnancy. Mine were discovered at 12 weeks but were of no significant level.

However they did rise and at about 25 weeks all of my antenatal care was transferred to a hospital with a resus unit. I was given weekly blood tests and fortnightly scans. Tbh the doctors at the hospital used to care me half to death giving me worst case scenario stories, when imo you'd only get to worst case scenario if your condition wasn't being minitored.

As it was I had my ds at 37 weeks, he was jaundiced for what seemed like forever, and then anemiac, but did narrowly avoid a transfusion.

I asked about the effect on subsequent pregancies and was told that it is impossible for them to predict what would happen. They said next time I could have sjy high levels and baby not be badly effected, or my levels stay as they were and baby be poorly.

Hello NNutty.... would it be really rude to ask what levels your anti c got to at 25 weeks??

When MW rang to say mine had gone above cut off limit she didn't explain what that was so that didn't mean much & when I was then with Big Clever Doctor I was a bit crap and baffled and completely forgot to ask if there is a particular titer number that is when the risk of HDN etc is higher.

V true though what you say about only getting to worse case if not monitored so closely so thats a comfort, thanks.

No not rude at alll duckduck, but unfortunatly I cannot remember. My ds is 6 now so it was a while ago.

I suppose there must be some magic number that makes them think they suddenly have to take more of an interest in it.
It may be that you already at a hospital that can deal with the whole thing ok anyway and so your care may well stay the same.

I think with my case it was more that the hospital I was originally under was more for straight forward non complicated pregnancies.

I do seem to remember though that, not long after I transferred to the new hospital, my levels did still rise but not as quickly as they had done.

Finding information out about this condition is really frustrating and when I had ds no one seemed to be able to tell me anything concrete.

I hope you have more luck with findind things out and that your pregnancy goes smoothly

Hi Duck duck, I am in similar situation to you and have anti c. I am now 35 weeks and my levels have fluctuated throughout. My highest level of 256 was at 12 weeks but they have gone down and up since then. I was told by my doc that there is no critical titre that means the baby is in danger. It is more important to monitor how quickly the levels rise from one blood test to the next. This is my 3rd pregnancy and I had same issues in second. She was induced at 38 weeks, very jaundiced but managed to deal with it with phototherapy and did not need an exchange transfusion thankfully. I agree with you regarding info on the web - very confusing indeed but at least there is more info now than 6 years ago when I was last going through this. Has the father's blood been tested? My DH is cC so 50% chance of passing on c to baby. You can also find out what baby is. I had a blood test (large amount) sent off to Bristol to find fetal blood group which confirmed that baby was c positive. At least we knew what we were dealing with then. My doc has said all things going to plan I will be induced at 38 weeks as no point taking any chances after that. I was very stressed and confused about it all but was reassured that it is uncommon for serious problems to occur with anti c. Hope all goes well for you and your pregnancy goes well.

Hello Mono3... thank you for reply - reasurring to hear both your pgs have gone ok throughout. DS1 had phototherapy when born 10 years ago and although not particularly nice is manageable, its the transfusion thing that spooks me.

I had blood results back this morning with titre level of 33.4 IU and a note from the hosp which just says "there is a high risk of haemolytic disease of the newborn when the anti-c level exceeds 20 IU" DH is O neg and I am 0 pos with anti c, but they haven't tested him for antibodies. When in your pregnancy did you have a blood test to find out fetal blood group? Am a bit of a biff at the mo and didn't understand what you meant by your highest level of 256 - what is that??

However, I think I got a bit over anxious after looking on web and presume as in your case that early and continuous monitoring means that things don't get out of hand. Midwives certainly don't seem to have met this antibody very much. Still makes you a bit flipping nervous though!

Did you develop antibodies after a transfusion? I didn't even think about the passing on of anti c to baby - certainly didnt get DD2 and DS3 tested as it was never flagged up - think I will ask about it next time I see doc though, thanks! DD

Hi, Sorry if i have confused you even more with my levels. To be honest, I am not entirely sure how they work but all mine seem to be related to a dilution to find out the titre so they go 2,4,8,16,32,64 etc ie double each time. I think the one you are referring to is the quantitation (or something like that) result. Sorry, don't know how they compare.
I had blood test at 16 weeks for fetal blood group but obviously that wouldn't be necessary if your husband is cc and not cC as then the baby would definitely be c positive. Seemingly Bristol is only place in UK to do this fetal blood test.

I agree with you regarding midwives not knowing much about this. Mine originally told me I would need an anti D injection - I had to tell her that was not the case! Even today when I called her regarding my blood results, she asked me if they sounded ok! Thankfully my doc seems on the ball and is monitoring things well. He even gave me his email address so I could contact him easily if I was concerned when I passed on my concerns re my midwife's knowledge. I have been scanned every 4 weeks to check the baby and am now on 2 weekly blood tests.

I have never had a blood transfusion but they think some of my DS's blood from first preg got into my system during the birth.

Also a friend of a friend is the only other person I have met with anti c and her levels rose quite early and therefore she had a number of intrauterine blood transfusions for the baby. The baby was well and is now a prefectly normal 3 year old.

Hope I have confused you further... I remember going into my appt with a list of questions as couldn't quite get my head round it all.

Keep us up to date on how things go.

Whoops, sorry, meant to say ' Hope I have not confused you further'!!

Hi Mono3

Don't worry about the confusion thing - I couldn't be much more confused! I suppose different hospitals have different ways of treating/diagnosing these things - at least I have a few more questions to ask now - particularly about testing the baby's blood group and therefore knowing where we stand, and getting DH tested. I did have my nuchal/combined scan yesterday and more bloods so we will see what comes back. Anyway, hope things are going well for you too - Ive just looked in a couple of old pg books and it talks about RH problems but again, it seems that c is a bit of an oddity. Anyway, thank you for your message - the stuff I have gained from this has been more than anywhere else...xx

Hi duckduck, it's interesting that mono could get the fetal blood group/rhesus antigens tested- I guess because her titre levels suggested a reaction, but sadly I have never been able to have this tested because it is an "invasive" procedure (although no more invasive than having intrauterine blood transfusions I'd imagine), and so it's not been offered. Basically my DH's rhesus antigen was tested by simple blood test, in our case he's Ee, I have anti E, so 50% chance any baby has "E" and my blood could react to it. I'm surprised they haven't yet tested your DH's blood, unless they are also assuming as your titre level has risen then the baby must have c antigens and so don't need to assess the risk of the LO having this by testing your DH's blood. (sorry, that is the most confusing sentence...tired again!)

Anyhow, really hope your levels aren't rising too quickly- it's great they are monitoring you, and LO, so closely. It's such a subjective thing in so many ways as like mono said- in some babies even a high antibody titre level doesn't seem to really affect them, whereas in others it can cause severe anaemia- so lots of scans etc. is the best way of making sure all's ok. Good luck xx

PS. mono good luck with your LO, hope all is ok and you make it fine to 38wks - not long now!

Jumpingjellyfish,

Just to clarify re the fetal blood group. It wasn't an invasive procedure, just a another blood test for me - bigger sample than normal- to enable them to pick up the baby's blood which is seemingly in my system from 16 weeks onwards. I understand from my doc it is a relatively new test and only done in the Uk in Bristol. I am up in Scotland but the hospital just posted the blood down there. It was good to know one way or the other if we needed to be concerned or not. Disappointing that the baby is c positive but I am being monitored well.

Thanks for the good luck. Got another scan on friday so hopefully all will be well.

Hope all goes well with you too.

mono that is most interesting to read. I am in NI but I imagine they could if warranted arrange for a sample to be sent down to Bristol. I think I might be lucky this time as the 12 week level was low, and they only suggested a re-test at 28wks, so I'm hoping this LO doesn't have E. But I will mention this fetal blood test to my consultant when I see her in 2 wks. I don't think it was even an option when my last 2 were born...

Good luck for the scan on Friday. FWIW my DD was born at 36wks, and is fine- but I'm hoping you can get to 38wks as it would be better still to be full-term.

Hi duckduck, I did not have anti-c, but did have anti-E in my second and third pgs. You don't need to have a blood transfusion to develop these; my DD1 'infected' me with ABs from her father. In my second pg, the levels stayed at 1:16, and nothing further was done. DD2 was fine.

DD3, my levels went to 1:32 and bobbed about all over the place. I was scanned for cerebral artery blood flow (to check for anaemia) every 2-4 weeks, with blood tests at the same time. I was induced for DD3, as they wanted her out. She developed severe jaundice and was in SCBU for 5 days with lights above and below. Thankfully, we escaped a transfusion.

I was told that, if any problems were detected in utero, they would transfuse. The consultant also told me that he had never in his years lost an anti-E baby (he was a foetal medicine specialist). I am a medical scientist, and I trawled the literature for info. I found a paper where one baby in a 30-year long study at a hospital in the US had died with anti-E, but the baby also had other problems, so the anti-E was unlikely to be the cause.

DH and I were never tested for our blood groups - they just assumed that this is where it had come from as DD1 was clear of antibodies and the other 2 DDs had them. I should say that DD3 is now 13 months old with no health problems and currently snoozing on the sofa next to her daddy

hey guys, wanted to share my experience on anti c and also hopefully get some answers to my questions too.....

i have 2 children aged 1 and 2, my first pregnancy in 2008 had no problems what so ever until i was pregnant with baby no2 which in the 5 month rouitine blood test they found anti c in my blood....

anti c can be given in a few different ways

1. blood transfusion in the past
2. a bleed during a pregnancy
3. blood loss from baby into the mothers body during birth

when blood that has antic enters the body that doesnt have the antic it causes the body to react and recognise the blood as foreign and yuour body starts to prepare to attack any anti c the next time it recognises it again this sense being that ure babys blood has anti c so ure body starts to attack it breaking dowthe babys blood cells causing anaemia from the lack of red blood cells in the babies blood causing distress and lack of red blood cells in anyoines body causes brain to malfunction causing brain damage and HDN even after birth the baby can still get brain damage if the right treatment isnt given in time i.e. light therapy and plenty of fluids..the baby need to get rid of the jaundice through wet and dirty stools so plenty and plenty of fluids is very important helping to flush out faster....for thi8s reason i found when too late its best to use formula so baby can get better faster and u can express milk ureself in the meantime to keep the milk flowing u can either throw it or give it to family to take home and freeze as its good for 3 months

the levels were very low to begin with and i had routine blood tests done every 2 weeks to check the titre levels every time i went they slowly rised then at a certaint time in my pregnancy they started the tests at weekly intervals and they started rising faster which they then decided to start me off at 37 weeks and predicted my baby will most likely be jaundiced severely.

they informed me throughout that i would most likely need a blood transfusion either thru the baby's cord ( thru my bellybutton) or after birth but this thankfully never happened even tho it was close.

so i gave birth to a healthy 6 pounder at 37 weeks and 1 day after only 2 and half labour which i was extatic about but spent 24 hours in false labour pains from the prostiglandin which i have to say is very painful and worse than natural labour pains and wasnt allowed to have my waters roken until i was 4cms dialated thankfully a male gyneacologyst came and gave me a sweep and helped me open to the right size and ot things started ( males have larger fingers btw sorry to be crude but its true and makes a difference so if u see one then opt strongly for a sweep its either u keep ure dignity and stay in unesecary pain for longer or get on with it and move ure labour onwards and i find male gyno's are more considerate and more friendlier than female...funny i know.....

so i gave birth and the baby was fine and we walked back to the ward thinkin i was gonna be home by morning as everything was fine and no one said anything about HDN or jaundice .... i was very wrong....
back at the ward at 11pm the baby specialist came to give my baby her first billirubin test at 2am and said she had to go over to special baby unit where they tubed her up and stuck drips in her arms i was standing there for 2 hours waiting for them to finish what they was doing not explaining anything to me.. i finally went to bed at 4am
had a few hours sleep and went back over at around 10am only 6 hours sleep after giving birth and still not knowing the ins and outs o9f what was happening

i got there and they said her billirubin is rising still she was under 5 course of light therapy for jaundice she was very severe and very yellow and i know had to mnake sure she drank at least 7ml of breast milk every 3 hours and for those who have expressed that much milk to begin with is very hard but i managed it and expressed so much over the next few days that my milk flow just stopped and i found it very stressful which made it worse still... so every 3 hours i had time to sleep eat shower and get back to express milk iot was very hard and very tiring i just wanted to sleep and cry being away from my first daughter for so long at such a low age was heart breaking as she was only 1 ndhalf at the time and didnt understand what was happening i was all alone trying to cope with all this as my husband was away working in london i was in wales at my parents place so they could watch my eldest daughter....after all the hell i went thru it was definately worth it cos after 2 weeks we came home and went back every now and again to make sure her levels stayed down shes now a healthy 1yr old who is more active and more clever than i can imagine a 1 year old to be....

just want to add also that u shou;d always check ure babies equiptment as 2 nurses put my babies billi blanket the wrong way for 24 hours which caused her to nearly have a blood transfusion from lack of lighyt therapy from the blanket that she really needed....
sorry for the long story....

the questions i wanted to ask was and i really need answers for ASAP so please email me to [email protected] i would be so grateful thankyou

question 1. i want to know how safe it is to get pregnant again will the titre levels start off from where they left off or will they start from normal again?

question 2. is there any sort of treatment that can remove the little c antigen from my husbands blood as hes the carier he has blood group o and Cc antigens in his blood and my blood group is B+

question 3.
any treatments yet or anything being worked on for future treatments...

thankyou please feel free to email me on [email protected]