FFS, surely the blood specialist knows what he is talking about ?

[Babieseverywhere]

Early in my second pregnancy it was discovered that due to the hospital's fuck up giving me the wrong blood transfusion following an routine operation a few months earlier, I have certain antibodies in my blood for life...cheers for that.

When I was 4 months pregnant with my DS, I saw a blood specialist with my DH and we were told that though these antibodies might affect me if I need a further blood transfusion, they would not effect any baby we made together as we can not make an 'big E' baby (they had tested my DH's blood at my insistence) so the tilter levels were irrelevant and no further testing was required.

So I had no blood tests from 4 months on during my second pregnancy.

Now I am 6 months pregnant with DC3 and the midwife team have told me I need to be tested every 2 weeks for the next 20 weeks

Now I don't want to be because :-
: I believe the blood specialist and think if it was not needed in my last pregnancy it should not be needed in this one.

: I am terrified of hospitals and suffered panic attacks and three weeks of nightmares prior to my last hospital visit, I don't want to be feeling like that for the next 20 weeks.

: I no longer have any transport and would have to take two children on a minibus type bus, for 1.5 hours each way ride to the hospital. Struggle whilst heavily pregnant with two children on foot around the hospital and in the waiting rooms, as the minibus doesn't take prams.

:My veins are terrible. It took them several hours, numerous people over three different departments to get blood out of me for my last hospital blood test.

: Lastly if I do need the tests this time, why did they fail to test me 20 plus times in my second pregnancy

Sigh, I am just so sick of being the 'problem' person who won't jump through all their hoops. They don't seems to understand how upsetting and stressful I find hospitals. Of course I will go in for any necessary medical treatment/test but I don't want 9 unnecessary stressful upsetting hospitals visits. I suppose for them it is just another day in the office and they have no idea why I resist hospital visits.

I hate conflict, I struggle to deal with HCP as I am fairly paranoid about their motives. The midwife I have is a lovely lady and I know is only doing her job, I just want a straight answer.

Was the blood specialist right last time and if so there is no need to have blood tests this time around.

Hopefully they are checking my hospital records and will be able to check with the blood specialist and get back to me

If they really need your blood can it not be taken locally (at GP's surgery or something) and posted off? completely unreasonable to expect you to make a really stressful journey to a place that winds you up. If you don't get a straight answer can you get someone else like your GP involved who might be able to extract the reasons why you need to give the blood and why you didn't last time?
sorry not to have any answers but you have my sympathy and i hope you get it sorted

The community midwife thought it might be possible to have home visits. But TBH my worries are more along the lines of :-

: Why has raised as a reason I couldn't have a home birth last time, are they just looking for problems.

: I haven't had a straight answer yet as to why high tilter level are a problem. If they did get high what would they want to do to me and the baby ? If they don't intend on doing anything, why bother testing in the first place.

Sigh, several phone calls on and I an reassured that they are trying to get hold of the blood expert person who looked at my results last pregnancy.

Logically he must tell them the same thing he told me last pregnancy i.e. Testing is pointless in my case, don't bother.

But this hospital is so test obsessed, they think why not test everybody for everything ...I think save the NHS the money and only test when it is bloody well needed.

I had this with my pregnancies.

I had my blood taken as normal at the booking in apt with the midwife and 3 days later had a phonecall at work asking me to get to my Gp's surgery asap.

Obviously was panicing about what was wrong, and Gp explained that I had antibodies in my blood that needed. monitoring through my pregnancy. I wasn't given much of an explanation as to how I got these antibodies or what harm they could do to the baby.

I had to go home and research it all myself.

I have Anti k antibodies, I got through a blood transfusion when I was 12. I had to have the regular blood tests and scans with both my pregnancies. Bloods every month till 6 months then every 2 weeks, and scans right up till a month before I gave birth. After labour the cord blood was tested.

If my titre levels were high it meant I could have a large baby,and they could have aneamia and kidney problems.

With my 1st I worried all the way through my pregancy and she was fine. With 2nd (ds) my levels really didn't get that high.

Doctors really need to work on there explanation techniques sometimes- giving people not a lot of information makes the patients worry and stress- we shouldn't have to go out looking for the information we need ourselves.

Hope it gets sorted out and you get the answers you need.

Hi babieseverywhere

I am in somewhat a similar situation to you. I have JKa antibody and 28 weeks pg at the moment.
I have had a really hard time getting good information but AFAIK you should take the advice of the haematologist.
There are hundreds of antibodies and not all of them cause problems for the baby. I know that the E antibody can but if the father of your baby doesn't have it then it can't possibly cause problems for the baby.

There are (outdated) guidelines that say the titres should be checked every 4 weeks. However, I have spoken to my perinatologist ( at an american Ivy League medical school) and his opinion is that there is no evidence to check them at all once you have the antibody. If it's there it's there.

His opinion is that if your husband isn't a carrier then no action is needed. If you don't know your husbands status ( or if he also has the antigen) then they do ultrasounds of the middle cerebral artery every 2 weeks and growth scans every 4 weeks.

I am a doctor but not a haematologist ( but I do work closely with many) and have asked a number of my colleagues- some are world experts in clotting etc.

From what I have gleaned and from what you are saying, no you don't need the titres checked every 2 weeks ( not at all unless you are concerned yourself) but they should monitor the baby with more frequent scans.

If there is any concern you may need more than the standard number of scans given on the NHS.

I have posted questions on this topic on MN before and really there aren't many people out there who know anything. I have done my best to be informed as the midwives and obstetricians don't have a clue ( understandably I suppose, they can't know everything)Also, my research was mainly into the JKa (Kidd) antibody but I think the E antibody is treated similarly.

let me know if you need more info

Sorry,

here is a link to the best website I have found.
www.perinatology.com/Archive/Isoimmunization.htm

^First Sensitized Pregnancy (no prior severely affected pregnancy).

If the father is Rh negative (or negative for the atypical antigen) then no further testing is necessary.^

Well, technically, you don't have to do anything you don't want to do. Just don't book the appointments. You should try to find out what you can about why they are insisting, but really, it could be done at your GP's if it has to be done at all.

Can you ask to be referred back to consultant? Just to check that medical advice hasnt changed since last pregnancy?

My community midwife is chasing my records and trying to contact the blood expert from last pregnancy and I should hear in the next couple of days.

Re other posts, that backs up what I was told last time, as my husband is not a carrier, I should not have to do any more tests.

I just hate making a fuss, I just wish I could hide away until my due date and accidentally miss the other midwife appointments.

Did I mention I am measuring 1 cm to big this week. Sigh, looks like I will be explaining that I don't want growth scans again in a couple of weeks. (was pressured in my second pregnancy to have growth scans and I declined 5 times...take the hint)

I give up, they are now waffling on about anti-C antibodies.

Bearing in mind the Manchester blood result in my second pregnancy was 'Rhesus Positive with E antibodies'. There was a mention of a minor Anti-D issue in my blood which was deemed 'not a problem' and my husband blood was tested and hence the Anti-E issue was overruled, in an hour meeting with the hospitals blood specialists. So where the hell has this anti-c thing appeared from.

According to this study these blood tests are not even reliable.

"Titres are therefore not reliable indicators for predicting the severity of haemolytic disease of the newborn. Neither should they be used as a guide to whether or not antenatal intervention is indicated."

So on that basis, I have had enough, I am declining further blood tests, they can test the baby when he/she arrives. I am not spending the next three months upset and stressing about nothing.

Not sure whether to go book any more community midwife visits, I could just get protein strips from boots and do the basics myself. I have had all the essential stuff (scans etc) done to date. My bump is already measuring 1 cm 'too big' and it is only a matter of time before I am getting regularly nagged into going for pointless growth scans.