Pregnancy and delivery with APS - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Pregnancy and delivery with APS

Bella_Bee profile image

Hi ladies,

I'm currently 23 weeks pregnant and so far so good. I have APS and FVL so I'm on 2 dalteparin 5000 injections and a mini aspirin a day.

I am looking to hear your experiences of childbirth on blood thinners, specifically women who had c sections. Were epidurals a problem? Were you asked to stop in advance? I've had a few miscarriages in the past so I feel like the thinners are whats keeping my baby alive. I'd be terrified to stop. But neither do I even want to attempt the "natural" way. I'm with a good hospital in London so I feel safe with them but I have a few weeks to go for my birth plan and my mind is already racing.

I know this is a bit niche but whatever you can tell me would be appreciated.

Thanks so much

14 Replies
KellyInTexas profile image
KellyInTexasAdministrator

“A bit niche” is exactly what APS and pregnancy is!

Who better but us? ( the correct answer? Not us!)

Trick question… just to make you smile 😊

The correct answer for you is your APS specialist Gynecologist.

We can tell you emotionally what we have been through, and generally what’s the norm,

Yes, a low molecular weight heparin ( LMWH) is used throughout pregnancy, and often aspirin. ( I assume jr strength. )

This is continued for approximately 6 weeks post partum, as the hormonal balance of pregnancy are still a bit prothrombotic until that time.

It’s the norm for APS mothers to be scheduled in advance for an early delivery. It’s been determined to be the safest course of action for mother and baby.

I had my children some years ago ( I’m well past those years and I was not yet diagnosed but should have been) so I’ll let women with real world experience ( boots on the ground, so to say ) come on and and answer questions for you.

I’d like to offer you a big congratulations, 🎉! !

Thank you so much for responding and your kind words.

Can I just probe a little on why c sections are the safest way for us? It is what I have my heart set on but UK hospitals hate it because they cost more money (for them, as the healthcare here is free for citizens) so I need to fight my corner a little and I can't seem to find much evidence online for them being safer for us. I'm not testing your knowledge, just hoping to build a case for myself :)

KellyInTexas profile image
KellyInTexasAdministrator in reply to Bella_Bee

It’s a great question, and I don’t know the answer.

Edit*

Post script: I know deliveries are scheduled in advance. I am not certain they are automatically scheduled as cesarean. Are they? I somehow think they are but now I’m questioning this.

Have you been told it will automatically be cesarean?

No, I've been told it should NOT automatically be a c section, so I need to advocate for myself. But it wasn't specifically in relation to me. It is more a UK NHS standard policy. So I sort of need to convince them that it's the best thing for me and I thought the APS might help. Truth is I cannot deal with the anxiety of a million things that can go wrong during a difficult labour and issues that arise from lack of oxygen to the baby so I'd rather take the hit and have a longer recovery from a c section than risk so many awful conditions for him.

I say all this whilst fully realising that it is entirely possible I could give birth in my bedroom in 20mins like my mum did 38 years ago!!!!! 😨😨😨😂😂😂

KellyInTexas profile image
KellyInTexasAdministrator in reply to Bella_Bee

Bella,

It is not an NHS issue. It’s nothing to do with funding. It’s also done here in the USA.

It is to do with safety of mother and baby, but I don’t know why.

These are my specific questions. Im sure it’s to do with hemostasis, risk of the integrity of the uterine wall with APS, so many things… it takes a lot of the issues you have anxiety about off the table.

I feel the very best thing for you is to trust your team in London. Ask them it is standard practice for APS moms to deliver early by cesarean. They will certainly have the answers and statistics to back it up.

I wouldn’t worry that it’s an NHS conspiracy to save money! 😂 This one they get a pass on😉.

My daughter was in Lovenox injections and 81mg of aspirin for both her pregnancies and they were a success! She carefully monitored with blood tests and sonograms to be sure she was progressing. Thank heaven for this medicine and the high risk doctors who took great care of her . Best of luck to you and your little one !

I have lupus and APS and I was on aspirin and fragmin injections throughout pregnancy x2 I was induced and 1 sweep at 38 wks both normal vaginal deliveries. I have the anti ro antibody too which means the baby can be born in heart block so they had a paediatrician on standby for the births.I had no problems with the deliveries well my 1st had to be a forceps in the end but apart from that all was ok.

I had regular growth scans and my son was born 38 wks at 5lbs 12 and daughter was 6lb 1

Hope all goes well but as long as u are on ur fragmin etc and having regular growth scans all should be well x

KellyInTexas profile image
KellyInTexasAdministrator in reply to Sara_A

Thank you, Sara. One normal vaginal delivery

MaryF profile image
MaryFAdministrator

Hi there, I have had three successful pregnancies on Fragmin, and Aspirin. Usually an epidural is not allowed due to possibility of clotting in that area. Really good team work with your Hughes Syndrome/APS specialist and GP is advisable, and please do ask them any pertinent questions you want answered. On here people will tell you about their experiences, and it is a relief to have that right medication. I hope you do really well for the rest of your trimesters. MaryF

IHi I had a c section nearly 11 years ago was on fragmin and aspirin...was told I'd probably give birth naturally as no worries but obviously never in end ..I had regular scans and appointments....I had an epidural there are risks but pros outweigh these in my case..I wish you and Ur family all the best and spk with your specialist for guidance....try to enjoy ur pregnancy easier said than done I know..ps I've also deliver natural but that 18 years ago before diagnosis of aps

Hi. My little boy is 16 months. I was on heparin and asprin (progesterone for first 12 weeks).Originally the specialist said to go no further than 38 weeks and I could be induced or have c birth.

Then my waters broke at 29 weeks. At this point they asked me to stop heparin, like you that was scary, but then I restarted it after a couple of days when it was clear I was not going into labour.

Eventually had the little fella at 36 weeks planned c birth (section). My choice. Had to stop injections 24 hours before.

We had additional growth scans and monitoring.

Wishing you all the best xxx

Thank you so much for sharing. I was also on progesterone injections and pessaries for the first 12 weeks.

Do you mind me asking what the recovery was like after a c section? Trying to prepare myself.. I'm single so I need to plan for the kind of help I will need. Could you hold the baby? Stand up unassisted? (I'm thinking in particular things like going to the loo or showering). Does the operation site interfere with breastfeeding? Thanks so much in advance

Hi. My little one taken to the nicu so I didn't have him with me (he wasn't breathing properly ) I did see other Mums and midwives had to do everything for a while. They get you up after about 6 hours, you just have to use your arms not your stomach to sit up. Our little one was pretty small, so I was OK lifting him. In terms of breastfeeding it's suggested rugby position is good. We used feeding pillows as he was on nicu and was tube fed and bottle fed. It was not an easy journey, but really recommend getting expert advice and lots of it and joining a breastfeeding group. We were very lucky and have a specialist feeding support service who ran a support group. Wishing you all the best.

Hi Bella_Bee,Congratulations on your pregnancy.

I’ve had 3 c/sections on aspirin/heparin.

My first was an emergency c-section and I had been seen at about 28weeks by an anaesthetist and I was told about Remifentanil which is what my hospital (in Surrey) offered if I had done my fragmin and then gone into labour. I remember this conversation with the man thinking this is way too early to be talking about this, I can’t even think about giving birth. I don’t believe I’m going to be a mum until this baby is snuggling in my arms!

What happened with my first baby is I thought my waters had gone but it was a bleed so I rushed in and they checked baby was ok (she was- thank goodness!) broke my waters and got my contractions started and hooked me up with the Remifentanil- it was controlled by me with a button. It was a strong painkiller but only lasted for a short amount of time, so the idea was to press it as soon as I felt a contraction start. I needed gas and air too. Anyway it ended up as a c/section as she was stuck and by the time I had the c/section it was 14 hours since I had done my last injection so I could have an epidural.

My 2nd and 3rd c/sections were planned and I stopped the aspirin at 36/37weeks and the night before the section I skipped my fragmin and then started them again the next evening for the 6 weeks post baby.

Your team will have a plan.

All the best!

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