Sigh, Any mothers with stories about anti little c antibodies

(43 Posts)
Babieseverywhere Mon 03-May-10 09:49:59

In particular I would like to know :-

: What tilter level did you get to ?
: Did the level alter much ?
: Did you do all suggested blood tests and scans ?
: Did you get pressured into being induced or were you left alone to labour properly ?

Thanks in advance

Babieseverywhere Mon 03-May-10 16:07:20

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Babieseverywhere Mon 03-May-10 20:57:25

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pooka Mon 03-May-10 21:03:59

Oh I got all excited when I saw the title - but my experience of anti-c is all post partum.

DS2 was born. A month later all hell broke out when my blood test results (taken at birth) showed way way too much anti-d. DS2 seen at hospital and his blood tested - he turned out to have haemolytic anaemia as a result of antibodies I had created to his A+ blood getting into his system. I now have a card to carry that says that I have anti-c and anti-d antibodies, should I need a transfusion.

DS2 had blood transfusion and is thankfully well.

Consultant gynaecologist suggested that would make subsequent pregnancies high risk. All three of my dcs have A+ blood.

So I don't know about ante-natal levels and how it would work in terms of labouring with/without intervention. Hope someone else can help.

pooka Mon 03-May-10 21:05:07

WHen I say excited, i mean it only in that no one I've spoken to (non-hcp) has ever heard of anti-c let alone the other groups like kell and so on.

mono3 Mon 03-May-10 21:15:38

I also have anti-c antibodies and my second and third pregnancies were both affected by it. The second was seven years ago and although my titer levels were checked regularly that was about it. I was induced at 38 weeks as my levels went up. My third DC was born 6 months ago and I felt things had moved on considerably since then in terms of the hospital monitoring me. My husband's blood group was also checked and as he was cC there was a chance this baby could be affected or not. At 16 weeks a blood sample was sent down to Bristol(only place to do this) to determine fetal blood group and unfortunately the baby was c positive. I had titer levels checked every 4 weeks until 28 weeks then every 2 weeks after that. I also had ultrasounds done every 4 weeks after initial 12 week scan to check for anaemia in the baby. My titer levels did fluctuate a bit both up and down. They started at 1:32 and went up and down over the months. Initially my consultant planned to induce at 38 weeks but as things were going so well he left it to 39 weeks. I had a sweep the week before and when in hospital waiting to be induced I went into labour myself which was great. I actually wished I had been induced at 38 weeks as my DC3 was very jaundiced for a few weeks and had numerous blood tests/phototherapy/hospital visits. It turned out that my last blood test at 38 weeks had gone from 1:16 the fortnight before to 1:256. However, don't take too much note of other people's titer levels as I was told it is not the level that is important but how quickly it rises.

I was always glad to get the blood tests and the scans as I felt reassured if all was well and if anything hadn't been going well they would have known about it then and been able to deal with it.

I hope that answers some of your questions. I guess you are going through a similar situation? How far on are you?

Babieseverywhere Mon 03-May-10 21:42:33

I am around 26 weeks pregnant with my third.
My local hospital gave me the badly matched blood transfusion after a routine op went wrong between DC1 and DC2 giving me anti little c and big E.

The blood specialists at the hospital when I was 20 weeks pregnant with DC2 said that my DH couldn't make an Big E baby with me and the other antibodies were not the type to hurt the baby. So no further tests in that pregnancy.

Fastforward to last week and suddenly this little c factor I have had throughout my second pregnancy and was never an issue is suddenly very important and essential to have endless blood tests hmm

I have big issues with hospitals and for my sanity avoid them as much as possible. I have said I will do one of those Fetal Monocular Monitoring blood tests to get the baby's blood test but no more.

My tilter level is only barely registering it was 1.3 at booking and 1.1 last week, if it was 0.9 they wouldn't care and it has to rise to 16 to be an issue (apparently but read conflicting opinions on critical tilters)

I am scared they will start pushing for more tests/scans.

mono3 Mon 03-May-10 22:03:19

It is up to you whether you have the blood tests and your levels do seem low. However, it is the last part of the pregnancy that this tends to cause problems in hence the blood tests every 2 weeks after 28 weeks. Obviously if you can find out the fetal bloodgroup you will know whether the tests are necessary or not.

This can cause haemolytic disease of the newborn which can be severe so I was of the mind that I was happier knowing what was happening to the baby as the pregnancy progressed. I do understand if you have issues with hospitals but couldn't your community midwife do the blood samples - mine did other than the times I had a scan as just got done at the hospital then.

Not sure about the critical titer as I kept getting told there wasn't one - the levels you are using seem different to how they were quoted to me so can't really compare.

BTW, my baby is abolutely fine now after a few weeks of a very jaundiced baby just after the birth. She also had to have many blood tests in the first few weeks to monitor her bilirubin level.

To be honest, I was happy to take all tests and scans on offer as it reassurred me so difficult for me to comment on your particular situation.

I hope all goes well for you.

pooka Tue 04-May-10 08:10:48

It seems that what happened with me was a "sensitising incident" during the pregnancy, that the prophykactic injections of anti-d did not deal with. We thiink it must have been late on because ds2 was remarkably well until his haemogoblin levels slumped. At 1 month he had a count of 5 when it should have been nearer 16. But no jaundice, and it was only with hindsight that he had become very sleepy in the preceding few days.

Babieseverywhere Tue 04-May-10 10:25:10

pooka, I thought injections of anti-d only helped RH- anti D antibodies and not any of the other letters, have I got that wrong ?

mono3, I haven't heard back from the hospital to hear, if they will do the fetal blood type test and I would like to do that one if I can. Maybe we'll be lucky and the baby will be of the right blood type as to not be affected by antibodies levels and all this can be shelved.

I am leaning to leaving things until after the baby is here and watching him/her very closely for bad jaundice signs. Especially as I had this issue last pregnancy and zero blood tests after 20 weeks and DC2 was absolutely fine, slight jaundice like DC1 but nothing more. For some reason they were only bothered about the big E element last time..go figure.

I find it difficult to have blood taken whatever the location, my veins collapse easily. To be honest it is not just the hassle of the blood being taken, it is the big stress of waiting for the results and the following hassle from the HCP to do yet more tests which gives me nightmares at night.
I can't be induced as I had a C-section last pregnancy and am attempting a home water birth again. Apparently there is a strong link between HDN and C-sections & instrumentals birth, so I have to try my best to avoid those. However as I failed twice before I am full expecting another failure, but I have to try my best to get an improved result...everything crossed.

I have PTSD from my first birth and that was an medicalized induced nightmare birth where my child was taken away from me, I can't do the same thing again.

Plus I am unwell with a bug (have been for several weeks now) which means I can not currently go on a long bus ride to the hospital even if I wanted to. But to be fair they haven't mentioned scans yet and maybe they won't in my case.

Sigh, why is nothing simple ?

MumNWLondon Tue 04-May-10 15:02:09

Yes anti-d only helps rh- mothers against making anti-d antibodies.

re: waiting until baby is born - you need to discuss the risks with your consultant, the reason they monitor this during pregnancy and induce (rather than just wait for baby to be born) is because of risk of fetal death.

however your levels seem low and as you say you had this issue during your last pregnancy where they didn't seem to care so maybe worth the regular blood tests just to check they stay that way?

Babieseverywhere Tue 04-May-10 15:49:49

I can't think about this any further, I will have the fetal test even if I have to pay for it myself (assuming you can pay for a blood test privately) and I'll be praying that the results come back in our favour.

It just has too.

mono3 Tue 04-May-10 17:52:09

Sounds like you are having a hard time Babieseverywhere. Nothing is ever easy is it! I do hope your fetal blood test gives you the right result. Chase up the hospital iif you haven't heard about this test as the sooner you know the better as you then know what you are dealing with.

In terms of the E and c antibodies, my understanding is that little c is more likely to cause HDN than E so not sure why they weren't concerned about the c last time. However, these things generally get worse with each subsequent pregnancy.

Also you say you want a home birth - I imagine you will be advised to go for a hospital delivery as if you need blood it is important that they have the right blood for you. When I went in to get induced they wouldn't start me off until they had blood to match mine ready just in case I needed it. So we had to wait until they got it from 50 miles away although as I said I then went into labour myself so they got it there quickly - thankfully I didn't need it though!

As mumNW said it sounds like you need to have a good chat to your consultant with a list of your concerns/questions as jaundice is really a good outcome-there are many other more severe ones.

For me the stress and hassle of blood tests and waiting on results was far outweighed by the relief that my baby was being well monitored.

Babieseverywhere Wed 05-May-10 08:29:44

"For me the stress and hassle of blood tests and waiting on results was far outweighed by the relief that my baby was being well monitored."

Good for you. If I didn't have a pathological fear of hospitals and several bad experiences of entering them, I might feel the same but I don't. I found that hospitals make mistakes and on occasions push unnecessary tests on both mothers and babies. They are only human, that means they don't always act in our best interests.

If they had bothered to blood matched the blood transfusion for me properly, following the operation they mucked up on, I wouldn't be in this situation. Do you know it would only of cost a sodding £3 to cross match properly (i.e. for all major antibodies), but they did it the wrong way and I am suffering for their poor judgement but I am meant to suffer the next three months and agree to be attacked in hospital on a preset date just to keep them happy...not without fighting to find every possible alternatives. I currently still have alternatives and that includes staying home as long as possible and as far away from those people as possible.

My last pregnancy was completely unmonitored and was fine so I need to speak to the blood specialist again and see if there is a reason for this, else I am a bit skeptical that all theses tests etc are essential this time around. I am waiting a call back from the hospital experts.

Lastly I am chasing up the fetal blood test and until I do this tests and those results come back, nothing is certain yet. If baby is the right blood type then nothing will happen to him/her even if the results go through the roof. I am hoping the baby has the 'right' blood type, surely we deserve a break.

pooka Wed 05-May-10 15:59:39

Fingers crossed that the baby's blood group is the 'right type' and you can avoid all the stress of hospital visits.

But having looked into the whole issue of HDN after and during the worry with ds2, please please do get more advice particularly from the haematologists regarding the risks of non-intervention.

DS2 was apparently very lucky to have been so well after birth and especially once he had the transfusion. I've been told by the gynaecologist that future pregnancies may be inadvisable, as now I have the antibodies a foetus might be compromised right from the get go. Something that I'm rather sad about - I had only planned on having three, but am not coping very well with having the decision made for me as it were. But then I really couldn't cope with the alternative.

Babieseverywhere Wed 05-May-10 16:55:34

Thanks pooka, glad to hear your DS2 is fine.

So despite having no anti-c monitoring through your pregnancy and having a lovely home birth, your issue was picked up and dealt with 4 weeks after his birth. Sounds overall like things went pretty well, totally sounds better than a forced induction at 38 weeks with seems to be the 'option' if the anti-c is found before you give birth

I am waiting for a call back from the blood specialists, however your story is encouraging me to wait and see even more.

pooka Wed 05-May-10 18:25:01

Actually though it seems that I now have antibodies as a result of the sensitising incident towards the end of pregnancy with ds2 - so I didn't have anti-c and anti-d in the early pregnancy, nor those of ds1 and dd.

The gynaecologist reckoned might have happened during the birth itself. Or when I walked into a door knob stomach first when was 38 weeks pregnant. Who knows? For whatever reason the prophylactic anti-d I had as a rh-neg mother didn't mop up the anti-d, and the anti-c nipped in at same time.

My last blood test was I think at 32 weeks and showed nil antibodies as did the 28 week one and the booking bloods.

But was a fantastic birth though, and I hope that you have the same.

pooka Wed 05-May-10 18:33:07

So basically, I would be in your shoes if I was to have another baby - only my gynaecologist said they would do serious monitoring, as having had a baby with HDN, and three children who all all Rh+, and one at least who also has anti-c, would suggest that there might be difficulties later on.

I think I was immensely lucky in that the result of the HDN with ds2 was aggressive anaemia which was thankfully picked up as a result of diligence by the National Blood Service and then the hospital calling him in on the basis of my bloods. He wasn't jaundiced, but was definitely getting more sleepy. What I had thought was beautiful complexion (no baby spots or scratch marks) was actually deathly pale, and as soon as he started with the transfusion, this network of scratches appeared on his face - they'd been there but he was too pale for them to show. I felt terribly guilty for not having noticed, but am getting over that now.

IN the end he had 4 blood tests and a transfusion and 4 hospital trips for check ups.

Anyway - I think lucky because could have been worse, and he's all well and recovered now.

Hope all goes well and good luck with the blood test.

Northernlurker Wed 05-May-10 18:47:08

Oh dear - well I know nothing at all about the blood issues here but i'll weigh in with some general advice anyway grin

Problem number 1) - if frequent bloods are needed and you know your veins are a bit capricious, I think you need to insist on the same highly skilled person taking blood each time. That way you'll know you can trust them and they'll know the good spots. How is your community midwife at taking blood? You can push for the same person - either her/him or maybe your practice nurse?

Problem number 2) - home birth - most clinicians get very twitchy about home birth as soon as something out of the ordinary crops up. I would be astonished if you don't meet some opposition. The last thing you want to be doing is fumbling around for your arguements in a situation where you feel stressed and upset. So - do your research now - there's a site called something like you can't have a home birth because...isn't there? Then write this down in bullet point form and keep that with your notes. Then you'll have it when and whereever you're challenged.

Problem number 3) the blood stuff. You need a long sit down with a haematologist I think - to explain all possible outcomes and ways of mediating all the risks. If you aren't already getting this you should push either your GP or obs consultant to refer you. This is a specialised form of medicine and you need it from the horses mouth not somebody who can kind of remember most of it...you wouldn't take an ob consultant's word for it if you had a broken leg so why would blood be any different.

Problem number 4) Your past experiences - have you ever had a debrief from that? Would that be useful at this point?

Babieseverywhere Wed 05-May-10 19:14:16

Thanks Northernlurker, it is handy to see things written in points, I like lists.

1)I can have bloods taken at the local GP's (if they manage to do so) BUT I am more worried about waiting for the results and further pressure arising from the blood. Hopefully if we get the baby's blood tested this will cease to be an issue.

2) Home birth is my only option and I have made it clear I am doing it. Assuming my levels remain low and/or the baby's blood group is good, I see no reason or need to change this. My consultant wished me all the best and hoped I will have a lovely home birth (I hope also).

3) I am waiting for the hospital blood specialist to give us an appointment and DH and I are doing a list of questions for them.

4) Been there done it. Talked a lot had counselling, it doesn't help. I am fairly normal person but after my first 'birth' I have a fear of highly medicalized births when I am butched and babies are ripped out of me and removed, not surprising really. Bit like being frightened of big lions, shouldn't we be frightened of things like that. As my current hospital have promised to repeat my first birth experience as far as they can hmm, I will aim to stay as far away from them, while I still have a choice in the matter.

Of course when if things go pear shaped during labour or with my bloods over the next three months, they will have their chance to their worst then, I am not volunteering !

Babieseverywhere Thu 06-May-10 09:09:45

Gulp, the baby blood test is £242 (at last years prices) if we have to pay for it. shock

Well, we are waiting to hear if the hospital will do it for us. Hopeing to hear from the hospital sometime next week.

MumNWLondon Thu 06-May-10 09:58:40

- I think you have to put a lot of pressure on the hospital/NHS to pay for this test unless they can demonstrate that there is no point at all (ie that because of your DH's blood group the baby will definately be affected etc), after all if the baby is not affected they will save more than that in not monitoring you etc.

- Even if the baby is potentially affected if your antibodies levels stay low you can potentially stay low risk, and this hopefully will not affect the birth. I know you have a fear of blood tests but I think you will have to get over this - perhaps have a meeting with nurse at GP practice and make sure you always see the same one.

I used to have a big fear of injections and blood tests but since I have developed an underactive thyroid I have had to get over this - as I have had to have monthly blood tests in each pregnancy, as well as all the routine ones.

Babieseverywhere Thu 06-May-10 10:31:44

I am not scared about the taking of blood. Though I just confess I am not happy that my veins collapse easily and I spend ages being a human pincushion whilst they try and get blood out of me. It is the wait/worrying over the results I find intolerable. Especially as the baby blood test could make these other frequent blood tests unnecessary.

I am now RHc (little c) thanks to the hospital hmm and my husband is Cc (Carries both elements.)

If the baby is just little c then he/she won't be affected by my little c levels at any point and so that is that we would wish for.

If the baby carries big C then we'll have to have a rethink.

I am assuming we have a 50/50 chance of the baby being little c but it might not be as simple as that, guess we'll have to ask the blood expert about that.

emmakc1977 Thu 20-May-10 13:35:25

Hi everyone, I can't beleive I've found this thread! I've been searching high and low for info on little c but can find almost nothing! I'm 12weeks pregnant with my third child. When I gave birth to Max, my second child I was told that they had picked up little c in my blood (I had a heomarrage and they wanted to know if I needed a transfusion) and that Max and I had to stay in so they could take blood from Max and check him over the next 48 hours. Thankfully, he was fine - I don't why (i.e. whether he had same blood or different blood to me) as I was pretty out of it and didn't really understand what they were talking about. Anyway, I'm pregnant again (Max is only 6 months old lol) and I've been told that I must have had a maternal bleed at some point when pregnant with Max and that he is a little c baby which he msut have got from his dad. They've tested my husband today, and fingers crossed he'll be little c (Max is IVF baby so if they don't have the same blood type that will throw up all sorts of questions lol). My levels were low at 9 weeks and they are going to take blood every four weeks and scan every 4 weeks after 20 weeks scan. She also mentioned that baby woudl be delivered at 38 weeks - is this pretty much normal?

Ems

emmakc1977 Thu 20-May-10 13:37:34

Forgot to say, I wanted a home birth this time but was told by consultant that it would really not be recommended (don't know if that means same as not allowed!) becusae they need to keep an eye on the baby for at least 24 hours. I'm a little gutted as I would have really liked a home birth this time around (I hate hopsitals) but I guess I'll do whatever they recommend.

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