confused...primary anti-phospholipid antibody syndrome

[angel7799]

im really confused & thought i would write & see if any1 had any advice

after 3 losses at nearlly full term, im pretty sure im ready 2 try once more, its been nearlly 5yrs since my last little baby girl died.
but im really scared that if i do fall pregnat that the same thing will happen again i suffer from primary anti-phospholipid antibody syndrome
so if there is any1 out there that has it or knows some1 that suffers with this illness that has any advice
thanx

[Arimeh]

I'm so sorry for your losses.

I think this is the same as what my sister has. If its a clotting problem, its the same as she has. She has to take aspirin all through the pregnancy. But she has had 3 healthy children - 1 late loss and one early loss.

I'm not sure if its the same - but thought I would pop in here just in case

[Spring Angel]

Sweetie, I don't know anything about that syndrome but I wanted to pop in and give you my deepest condolences for the loss of your three beautiful babies. You are an amazingly strong woman.



Spring xx

[Ca Plane Pour Moi]

Hi Hun. This is something I may have, so I have done a LOT of studying on it!

Once you have been diagnosed, you take Warfarin (NOT aspirin!) during pregnancy; this thins the blood enough to allow the important nutrients to pass through to the placenta and the baby.

If you do a google for Hughes' Syndrome there are some GREAT UK websites which detail all the pregnancy and pre-pregnancy details you will probably ever want to know. It's quite hard to find people who are really up on it (and I live near London, where it was first described!) so it's important to be the informed patient and bring things like essential medication lists to your GP and search the literature (PubMed is a great resource) to back you up.

Best of luck to you.

[angel7799]

thank u all 4 ur kind words & advice,
i was told i had primary anti-phospholipid antibody syndrome at the age of 16yrs old when i lost my little boy harley im now 25yrs old & since my baby boy lost 2 little girls my last 1 i was put on clexine where i had 2 inject myself twice a day, while im not pregnat i take warfarin every day 4 the rest of my life,
at the age of 16yrs old i had no idea what the doctors were telling me they kind of dumped it on me with sorry love ur baby has passed away & u also have primary anti-phospholipid antibody syndrome its taken me 9yrs 2 take in what is really goin on in my body i now know when my illness is playing up,
i think my reason 4 posting a message was i just needed 2 get it out of my head that im scared 2 try again my partner daniel keeps telling me things will b ok...
so thanx again ladies

[Ca Plane Pour Moi]

It's so hard to take in all at once like that, you poor love.

As you say, you now know your illness and when you're having a bad day, so you can discuss this with your doctors first and find out if you need to up mediction on a bad day or if they can give you something else... it's so important to discuss this first as there's loads of things that change in the body while pregnant and it's great you can recognise what's your illness and therefore what's not while you're pregnant.

It's perfectly normal to be scared, even without your diagnosis, so don't feel alone. BB has a fantastic pregnancy after multiple loss/late loss area so you'll have LOADS of support from women who have suffered too so you won't feel so alone.

I've been suffering since about 15-16 too; only now we're looking at a diagnosis (which may not even be this). So I can recognise the bad days and the good, but still don't have any treatment. It's so frustrating when your body acts like this, but sort of nice to know you're not alone with it IYKWIM.

I'll be looking forward to hearing how you're getting on and what decisions you make.