[butterfly_mom]

I just found out that I may have antiphospholipid syndrome. The doc thinks maybe that a blood clot caused my Bailee Elise to pass away, then infection set in. I was septic after delivery. I was devastated. I cried hysterically. The doc assured me that they would watch me from the very beginning and give me aspirin and heparin to control it. Then later the non-stress tests. I think what got me was when I asked if I was at a higher risk for miscarriages and stillbirths. I had to ask and she said yes but like she said they would keep a close eye on me. She told my dh that many women who have this deliver healthy babies. I'm sooo scared especially since we have been ttc. I try not to think about ttc too much. I dont want to become obsessed with it. When it happens, it happens.

If anyone has any information or is willing to share their experiences, i'd be grateful for that.

-liz

 

[Brinda]

Wow, I'm so sorry for your loss, and I can only imagine how scared you must be! I've never heard of that before, do you have any links that I can read on it?

 

[orangefoot]

Hi

I am so sorry to hear of your loss and your diagnosis. It is so horrible to think that something inside your body made something else happen. I have Protein S Deficiency which can cause clots but have been fortunate enough not so suffer any losses although I have had a blood clot in my leg.

There is a thread in health and healing called Women with Blood Clotting Disorders, you could post there and see what others say. There is also a Yahoo group called FVL-PG which has many mums with APL but is very mainstream and may freak you out when you read it for the first time (the attitudes still freak me sometimes).

Your doc is right that you can be treated during a new pregnancy, treatment with aspirin and heparin will drastically reduce your risk of miscarriage compared to no treatment. I am preparing to ttc now and have put it off because I will need to inject myself daily with a form of heparin to prevent clots but I feel ready to do it now so here we go.....

One thing to consider is that your insurance may or may not cover the cost of treatment during pregnancy as the meds are expensive so it would be worth finding out about that too.
Here is another link which may be useful http://www.hughes-syndrome.org/

Best wishes
Rachel

 

[sarah9774]

I have a clotting d/o as well prothrombin factor II mutation and will be taking shots upon a positive pregnancy test. I take 81 mg baby aspirin and xtra folic acid as of now.. will be TTC end of November.. there is a clotting and pregnancy page at yahoo.com under groups FVL all the women there have clotting d/o's all kinds and are working through TTC or pregnancy..
I hope this helps

Sarah

 

[HoosierDiaperinMama]

Please join our thread in H&H. I have learned a TON by subscribing to that thread. I'm so sorry for your loss.

s

 

[sarah9774]

can you post a link to that thread?

 

[mighty-mama]

Just wanted to say I'm thinking of you and hoping for the best.

I had two m/s. and my dr's were concerned I had this too. I do have autoimmune diseases and at times my blood work leans towards lupus. For me, as a precaution I was taking baby asprin as soon as I became pg w/ my ds. I stopped taking the asprin as my rheumatologist determined I did not have any clotting problems at this time. I did deliver a healthy boy....

Although it does still concern me, for me I think I am going to go thru the same regimen once I become pg again.

giving you the best wishes....