Thrombophilia and APS in pregnancy

[Here4theaibu]

Hi

I had an ectopic pregnancy nearly 2 years ago and a late miscarriage at 18 weeks 3 days in March this year

Having finally spoken with a consultant this week, I've been advise to be tested to Thrombophilia or 'sticky blood' which makes you more prone to blood clots. They think this maybe want happened with this pregnancy. I had a bleed which attached to the placenta and formed a blood clot which prevented blood from getting to my placenta and caused me to go in to labour

If I were to get pregnant again and I have this it would mean daily aspirin and heparin injections plus consultant/Dr lead care and scans every 4 weeks.

Has anyone had a successful pregnancy managing this condition? I'm so desperate to be pregnant again but the thought of something going wrong again absolutely terrifies me. I just want to hear some success stories

Thank you xx

Bump

I’m sorry for your loss.
I haven’t had personal experience of this but I do know lots of women who have had pregnancy loss in second trimester who have gone on to have healthy pregnancies following that, both with and without a diagnosis of antiphospholipid syndrome. I’m not sure if there’s anything else in your history that makes them think this is likely to be APS, or if that’s just one of the possibilities? I don’t want to ask you to go into a lot more detail about that but just to mention that the tests may not confirm APS after all so it’s a little b it of wait and see. And just because this has happened to you once, it absolutely does not mean it will happen again - much higher chance of a normal pregnancy. Have they made another appointment to see you back with results?
I think regardless of the cause you are going to feel lots of emotions/anxiety about the thought of another pregnancy, it’s very hard. Wishing you all the best.

I was tested for APS prior to ttc as a next of kin has the diagnosis. So whilst I don't have personal experience I did quite a bit of reading prior to ttc. From my reading the biggest problem is undiagnosed aps, knowing its an option means they can take extra care and make sure you are on appropriate blood thinners.
Your odds are better on treatment and with close monitoring although there are no guarantees with pregnancy. There is a book something like sticky blood explained which talks about aps which I found helpful when my family member was diagnosed, I think they found it helpful too.

Thank you both xx

The consultant should contact me in around 6 weeks and if that test is positive I've got to have another to confirm diagnosis. So no TTC until at least after the first test
I've got nothing in my history to make me more prone to this. My pregnancy was perfect up until I went in to labor. I think I'm still struggling with why it happened and just questioning why it had to happen to me .
But from what I've read it is quite manageable and I'd be monitored a lot so that is reassuring. It's still terrifying though xx

@Here4theaibu Not sure if you are still about but can I ask what ended up happening? I'm getting testing for this soon after a loss

Hi @TheDaydreamBelievers

I am currently 33 weeks and 4 days pregnant and counting down to going on maternity leave!

I have some blood tests and they came back inconclusive to be honest so I think it was probably a one off event where they think I just formed a clot on my placenta. This time round, my consultant prescribed me to take Dalterparin injections daily throughout my pregnancy which I have been doing along with Aspirin and while I don't know for sure if this has prevented history repeating itself, I'd like to think it has made a difference and is why I'm sat here feeling baby wiggling

I've had growth scans every 4 weeks but everything is looking good 🙂

The wait between to 2 blood tests I had seemed such a long time as we were advised not to get pregnant in case more tests were needed.

I've got to have another blood test/consultation in July to see if any blood levels are still raised but hopefully not!

I'm so sorry about your loss. I was lucky for this to be looked in to after 1 loss so I hope you have all the support and help you need xx

Thanks so much for replying @Here4theaibu and congratulations! Bet you can't wait to meet your little one. Glad their growth etc is looking great :)

Luckily, my healthboard is offering this after one loss, because of the later timing of the loss. As you said, does feel like a long wait though!

@Here4theaibu

Hi

I had an ectopic pregnancy nearly 2 years ago and a late miscarriage at 18 weeks 3 days in March this year

Having finally spoken with a consultant this week, I've been advise to be tested to Thrombophilia or 'sticky blood' which makes you more prone to blood clots. They think this maybe want happened with this pregnancy. I had a bleed which attached to the placenta and formed a blood clot which prevented blood from getting to my placenta and caused me to go in to labour

If I were to get pregnant again and I have this it would mean daily aspirin and heparin injections plus consultant/Dr lead care and scans every 4 weeks.

Has anyone had a successful pregnancy managing this condition? I'm so desperate to be pregnant again but the thought of something going wrong again absolutely terrifies me. I just want to hear some success stories

Thank you xx

Yes in a nutshell.

I have a rare thrombophilia and needed ivf as I kept having early miscarriages. I took heparin injections from embryo transfer right up to the end of the pregnancy. Aspirin should have started from 12 weeks but I stupidly delayed filling the prescription and so didn’t start until after 20 weeks. That delay was enough to make my placenta fail just before my induction. DS was ok but it was a bit scary during childbirth.

I did have a major pph due to the heparin and aspirin intake (and forceps) but the consultant had planned for that, and I stayed in hospital for almost a week until my heart rate returned to normal.

One thing - many consultants say no to elective c-sections if you have a thrombophilia. They will do it if the baby needs it of course but there often must be a clinical need.

@GrumpyHoonMain yeah I'm trying to weigh up my options about a c section at the minute. My first thought was because losing my little boy was so traumatic I didn't want to go through labour again but I have been advised a natural labour would be better especially for future pregnancies.
At the minute this baby is showing as breech so if they don't get turning it might end up being a c section anyway! I've got another scan on Monday to see! Xx

I have sticky blood and am 30 weeks. Have been taking tinzaparin and aspirin throughout. I have just been booked in for a c-section at 39 weeks as I didn’t want to be induced (they needed to induce me so I could stop the injections).

[quote Here4theaibu]@GrumpyHoonMain yeah I'm trying to weigh up my options about a c section at the minute. My first thought was because losing my little boy was so traumatic I didn't want to go through labour again but I have been advised a natural labour would be better especially for future pregnancies.
At the minute this baby is showing as breech so if they don't get turning it might end up being a c section anyway! I've got another scan on Monday to see! Xx[/quote]
I don’t know about future pregnancies but I was told a c-section would help reduce the risk of pph. As I had had one anyway I imagine if I were lucky enough to get pregnant again a c-section would be even more out of reach lol.

Good luck with the breach. DS managed to turn around himself by 36 weeks. fingers crossed

Raise the risk of pph not reduce

Hi

Sorry to jump in on this post. I’ve just had a diagnosis of APS after two missed miscarriages and there is a long wait for a referral to a specialist. Could I ask what doses of aspirin you all took? I’m TTC at the moment and no idea if I should be taking it or not.
I hope all is going well with your pregnancy OP. Thank in advance for any help.

Hi, I am currently pregnant following a diagnosis of APS. I take 150mg of aspirin each day and also a daily clexane injection. I wasn’t told to take them whilst ttc though, I was prescribed both following an early scan at around 7 weeks pregnant.

Hi @Nixie87

I was on 150mg of aspirin along with the Dalterparin injections but only once pregnant. The aspirin I was advised to only take from 10 weeks by my consultant and the injections I was in from 4 and a half weeks

My little one made an appearance 2 days ago! I was induced due to some slightly extra fluid around him but I think he was on his way anyway. Ended up with an emergency c section due to not progressing past 4 CMS and having an overwhelming urge to push on every contraction

He's absolutely perfect and we should be going home tomorrow!

Hi @Here4theaibu

Huge congratulations on your safe arrival. I’m so happy it’s worked out for you.

Thanks @notinthestarsigns for your response too!

This morning I got a positive pregnancy test result so my APS treatment journey is about to begin. I’m so scared but so happy that there is a better chance of success now.

Calling the GP tomorrow to get started on treatment. Might start on 75mg aspirin immediately as I’m four weeks and historically my pregnancies stop growing at around 6weeks. Any advice welcome xx

Hi @Nixie87

Congratulations on your positive test! I have everything crossed for you and hope all goes well!
Little one is 4 weeks old tomorrow and I still can't stop looking at him!

Xx

@Here4theaibu your little one should be one year old now. Hope you and him are well!
@Nixie87 I hope your pregnancy last year went well? Did the APS treatment help? What did you have to take, if you don't mind me asking?
I got diagnosed with APS after 4 recurrent miscarriages. I have a full term, healthy 4 year old daughter prior to these so not sure if APS developed after her birth or if I was just lucky then.
I'm now TTC again but I'm so worried that the aspirin and dalteparin that my doctor has suggested will harm the baby. Did you have this discussion with your doctors? Do you have any advice as fellow APS "patients"?
I appreciate this thread is old but I'm hoping to hear from you. 🤗

Hi @Lilipa
Sadly it didn’t go so well, I had another missed miscarriage and lost my twin girls. However - that loss was not in the end related to APS, it was just an unfortunate chromosome abnormality so we were very unlucky.
However I am currently in my fourth pregnancy but with the APS medication and all is going well. I am nearly 14weeks and progressing well.
I think your Doctor is right.
I was told by a haematologist that I will now be on 75mg aspirin daily for life. I took that while TTC. As soon as pregnancy was discovered at 3.5weeks I started taking 150mg Aspirin daily and have been on dalteparin injections. I’m also taking progesterone. It all seems to have helped. This is the furthest we have ever gotten…
wishing you lots of luck with your APS journey. Keep advocating for yourself and see specialists where possible. GPS have limited knowledge of APS and pregnancy x

@Nixie87 I am sorry to read about your loss last year but glad to see the positive news about your current pregnancy. It will go well this time! Thank you for taking the time to come back to me. Best of luck! <3

@Lilipa yes he was one a few weeks ago! Proper little whirlwind but he's just the absolute light of our lives .

We're hoping to move house in the next year and then think about TTC again. I had blood tests after he was born and it doesn't seem I have any signs of APS in everyday life so the drs think it may be pregnancy related. It would be down to me to decide if I want to do the blood thinning injections and aspirin again and as much as I hated them I think I would. Whether they made a difference or not, I'm not sure we'll ever know but I think I'd feel like I'd at least done what I can.

Xx