Anti FYa antibodies and pregnancy

[Hopingformyrainbow]

Hi, I’m really hoping someone will be able to help put my mind at rest.

To cut a very long and painful story short I lost my first born last year due to and acute fetal maternal hemorrhage at full term. I’m December I had a mmc. Now I’m nearly 10 weeks pregnant and ive had blood done. I was called back for more bloods on Friday but the midwife I dealt with couldn’t tell me why these bloods were being asked just that they had been. Yesterday I received a letter from the NHS giving me a card that states I have anti fya antibodies. The information I received with said card simply said certain antibodies can cause problems to babies, but didn’t state which antibodies.

Given my history my anxiety is already through the roof and I’ve been trying to research this myself. I’m reading conflicting information. Can anyone shed some light on what issues this may cause?

I’m obviously awaiting the results of the bloods from Friday which I’m assuming will be them testing the titres of the anti fya and I will try and contact someone on Monday. The problem is I’m not entirely sure I know who specifically I should be contacting.

Sorry for the ramble, my mind is all over the place. X

Anyone?

Hi @Hopingformyrainbow, I'm sorry you're going through this, and for your losses. I really hope you get your rainbow.

Anti-FYA antibodies are to do with your blood type and mean that your body may defend itself against any FYA antigens it encounters. This can cause problems if you have a pregnancy in which the baby has FYA antigens on their red blood cells. If that happens, then the baby may develop anaemia - although with anti-FYA my understanding is that the anaemia is usually milder than with some other antibody issues.

The RCOG has guidelines for managing pregnancies with anti-FYA issues as well as other red cell antibodies. You may well get referred to foetal medicine for additional monitoring and treatment, to help keep you both safe and well. It might be worth mentioning to your GP and your midwife, so that you can get any referral process started promptly.

Initial monitoring will probably be with additional blood tests (to monitor your antibody levels - they might need to give you additional treatment if your levels increase significantly) and ultrasounds (to monitor for any signs of anaemia for your baby).

It's always scary to get news like this and to be told by mail rather than through a consultation feels like it would be even scarier. Make sure that you take all your questions to your GP and midwife - if they don't know an answer, emphasise that you want them to find someone who knows the answer!

With monitoring and follow-up, many women with red cell antibodies (including anti-FYA) go on to have successful pregnancies and healthy babies. I really, really hope it works out for you.

So sorry to hear about your losses.
I had antibodies through my second and third pregnancies, not the one you have but anti-c. I was well monitored throughout with regular blood tests and ultrasounds to check the babies. I was induced early at around 38 weeks with both as levels started to rise and both then needed light treatment for jaundice. No ongoing concerns with either child since. Make sure you read up and ask questions so you know what you are dealing with but definitely something that is manageable with ongoing monitoring.

@Scirocco thank you for replying. I’m just so worried. I’ve not eaten or slept since I got the news. I just cannot believe that after all we’ve been through there’s more to deal with.

From what I’ve read anti fya seem to be less commonly associated with HDFN but my chances of developing any of the issues I’ve had so far were so slim that statistics rarely give me any comfort.

You say from your understanding, if you don’t mind me asking, do you have any experiences if antibodies yourself? I’m really struggling to find any body who does, or if I have found posts regarding it they have C, c or e antibodies.

Xx

@Skyrain thank you for your response. It’s good to hear that your little ones were ok. How long did they have the light treatment for? My first baby shower I lost at 2 days old spent all her time in neonatal care and the thought of spending lots of time there is torturous! I’m worried it’ll bring it all back. I have lots of questions already written down but I’ll keep adding more no doubt. Did you have any specialised personnel attached to you other than an obstetrician? Xx

Hello. I’m so sorry to hear about your losses. Really so traumatic
Congrats on your pregnancy. So I can’t advise very much on this specific type but as a previous poster suggested the treatment is the same for most of them.
For my 2nd pregnancy there were little c antibodies detected in my blood at 28 weeks (very unusual as I never had a transfusion and also they weren’t there at earlier bloods or maybe just missed) anyway I was referred to the Fetal medicine unit and I had to have my bloods taken every two weeks to check the titre levels. They rose a bit but not significantly enough to have a scan (to check the blood flow to the brain I believe ) and my son was born at 39 weeks via planned c section and he wasn’t even jaundice ! I remember being very stressed and trawling the internet to try and find information but there wasn’t much out there (was all D which there is treatment for with injections) but it was all fine in the end. Hopefully you’ll get to speak to someone more knowledgable. The first call I got was from a nurse who said she had never come across it before in 20 years as a midwife and she knew nothing about it so I was in total panic mode!

@Hopingformyrainbow both received light therapy in hospital straight after birth, in post natal ward, for a few days and then we went home but both started to get more jaundiced so back in again. My oldest stayed a couple of days in neonatal under the lights but youngest was sent home with a biliblanket which is an uv light worn under their sleep suit so didn’t require a hospital stay. They are both older now so not sure how much will have changed with the treatments plans now as I have 6 years between them and the plans had changed in that time.

Good to hear that there is less risk of HDFN with your antibodies, that is encouraging.

Amazing how many people have now met who have also had these issues during pregnancy. I have to carry a card stating I have antibodies as if I ever need a blood transfusion it has be cross matched. During one of my inductions there was a delay as the hospital had no blood to match mine so had to get some from a neighbouring hospital.
My care was managed between the community midwife team and the hospital. The community midwife wasn’t that clued up on this so I eventually asked to only get check ups at the hospital as I felt more confident of their ability to manage it.

@Immaback thank you for your kind words. I really appreciate them. I already feel slightly calmer just being able to talk about it with people who can understand. I’m just worried that they’ve been picked up on so soon - but the letter that was sent out was dated on Wednesday, I’m trying to think along the lines of if it was something to be really worried about then SURELY they would speak to me at least over the phone? Or am I just pulling at straws? I’m am praying to any entity that will listen that all is well with this little one! I’m also going to be having an elective C-Section at hopefully around 37/38 weeks. Hopefully, the hospital are just being super thorough. 🤞🏻X

@Skyrain Im already pretty annoyed at the fleeting midwife care I’ve received. She prepared my notes and brought them to me and then said “so you already have one child?” I couldn’t believe it, my notes with all of my previous pregnancy details were literally in front of her. So I may request for all of my apps to be at the hospital from now on.

It’s good to hear that things have developed a lot. Hopefully if I am unfortunate enough for this pregnancy to be affected by this then it’ll be relatively straightforward to deal with. If you don’t mind me asking was the reason for your rising levels? Did you little ones have the antigen that reacted with yours when they were born? Xx

@Hopingformyrainbow I don't have personal experience, sorry - I work in healthcare so have encountered these issues in work occasionally.

@Hopingformyrainbow well I got a phone call not a letter but that might just be the trust that I was with or something. I think once you speak to a specialist and are seen by Fetal medicine you’ll feel much better. I was like you very upset and worried but I felt much better when they explained the monitoring that would be done. I suppose I was lucky that the levels never became so raised that I needed any more intervention and hopefully it will be the same for you. Best of luck and let us know how you get on xxx

www.rcog.org.uk/globalassets/documents/guidelines/rbc_gtg65.pdf
Here are the guidelines which you may have already seen

I have Fya antibodies and another letter also
I had regular blood tests to check the levels (which for me didn't rise)
I didn't get any extra scans
My OH had a blood test to check his blood type and antibodies

Baby arrived fine - didn't need special care - did have jaundice so a few nights in the light box

@DonGray.Thank you for that info. :) I’ve had a call from my midwife today who had told me that the second sample that they took had came back and the levels of the Fya antibodies in my blood was so small it couldn’t even be quantified! So just some more tests at 28 weeks. So I feel much more relieved! But good to know that intervention, should I need any, is manageable! Xx

Hi sorry to hear this and for your loss , sending hugs. I received a letter and card today saying Anti - E + c, i have no idea what this means? I know how you feel . I tried googling cant find anything on what codes mean.

@Mad05 I had a phone call from my midwife telling me that the levels are so small they can’t even quantify them so they’re unlikely to cause any issues but I’ll be monitored anyway. I’m not specialist, but in the copious amounts of reading and info I’ve gained from various medical sources, journals and specialist midwife knowledge the ones to be most concerned about and Anti - Kell ones and Anti D - anti D can be dealt with with an injection though. So I know considering how much of a absolute mess I was, but try not to flip out and wait until you can speak to your midwife xx

Thank you, its just a worry when you get those letters. Plus found out had diabeties today. Just been one them days. Hope its all going well with you x

It’s poorly coordinated at times. They shouldn’t just send out letters without contextualising the information.

I’m sure you’ll be looked after super carefully - our NHS is a wonderful thing. I tried to look at it as at least it’s been picked up on early so that they can monitor it and they are aware if it.

I’m ok - for now. No doubt something else will pop along somewhere during this pregnancy that’ll scare the hell out of me though. X