2nd Trimester

Antiphospholipid antibodies

Okay, so no one is biting in the high risk forum, so I'm sorry, but I'm just trying reach out for more information... without having to wait until Friday.

My daughter Addison stopped growing at 18w and went from the 68% to 7% percentile at 22w. At a f/u u/s at 24w, she had dropped even further into the 4%. 

 They took a bunch of blood, and the Dr. told me he expected all of the results to be negative-- well, they're not. I got a call today from the Dr. himself saying that one of the tests came back positive and as he said "it is definitely positive" 

That test was for antiphospholipid antibodies- and he basically described it as my body making antibodies that is attacking the placenta...the treatment is baby aspirin. I've seen mommies on the BUMP talking about it, and I was just wondering what they did and how their pregnancies progressed.

I don't find out any more information until Friday, so if anyone has anything to share... I'd love to find out what someone's experiences was... If not, please keep Addison and I in your T&Ps until we get this mess figured out. Thank you, bumpies! 

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Re: Antiphospholipid antibodies

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    I have no answers, but you and Addison will be in my thoughts.
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    You and Addison are in my t & p
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    T&P with you and your little girl.
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    You shoud see a hematologist.  Besides aspirin you likely need an anticoagulant such a lovenox. Best wishes!!
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    This is going to be long, but I can give you tons of info. that should be helpful.

    My mom has this disorder and lost two babies back in the 1970's when they had no idea what it was and had absolutely no treatment for it.  DON'T WORRY-- it is totally treatable now, but I'll give you all the details that I can just so you know what it is. 

    I was born in 1977, but my mom was pregnant a couple of years before that with her first baby.  At 7 months, she had preeclampsia and toxemia and delivered a still-born baby boy.  The doctors had no idea what happened.  Then, she had me.  About 4 years later, she was pregnant with her third.  It was basically a repeat of the first pregnancy (but with a girl), and the doctors just told her that it wouldn't be wise to try again.  So, my dad had a vesectomy.

    Fast forward to around the year 2000.  My mom's blood pressure shot through the roof and she got really, really sick.  We live in NH where Dartmouth-Hitchcock, one of the top hospitals in the country, is located, so she ended up going there to see a bunch of specialists.  That's when she discovered that she has had antiphospholipid antibody syndrome pretty much her entire adult life.  Your description makes me think that your OB doesn't really know much about it.  This is an exceedingly rare condition, and only hematologists know anything about it.  Even then, you have to go to a high-risk pregnancy hematologist to really get the info. and answers that you need.  Anyway, what the syndrome actually does is make it more likely that your body will produce blood clots.  So, when you are pregnant, your body clots off the placenta long before it's time for your baby to be born.

    When you know about this during pregnancy, it's no big deal at all.  When you don't know about it, like my mom didn't, it's a HUGE issue.  In fact, my mom told her story to one specialist, and he literally didn't believe her when she told him that she has a daughter!  He told her it was medically impossible that she carried a healthy baby to term without treatment for this disorder!

    So, then my mom's doctor told her that this syndrome can be hereditary.  I was tested for it back in 2005, and my blood work did come out positive (although it was kind of borderline).  I went to see a hematologist, and she put me on low-dose aspirin, but told me that I didn't need to really think about it until I got pregnant.  She just told me to come back the second I found out I was pregnant.  So.... when I found out I was pregnant in February, I immediately made an appointment with her.  My OB doctors consulted with her, and I was put on full-dose apirin until they could do all my bloodwork and send me to a high-rish pregnancy hematologist at Dartmouth.  (I can not even tell you how many vials of blood I had taken!  It was unreal!)

    Well, after checking several times and meeting with the specialist, my bloodwork came back negative!  The specialist told me that this kind of test often gives a false positive, and mine was borderline to begin with anyway.  He assured us that we have nothing to worry about at all.  Plus, I have never had any issues with blood clots, even when I was on the pill for like 12 years and stuff like that.  

    If my bloodwork had different results, I would have been put on Lovanox, which is the only blood thinner that is safe during pregnancy.  (This did not exist in the 1970's, so nothing would have changed for my mom even if her doctors had known about her disorder.)  Lovanox is a form of Heprin, and it's not very fun to take, but it's effective.  It must be injected, so you have to give yourself shots every day.

    Most doctors have never even heard of this disorder, and you absolutely must go see a high-rish pregnancy hematologist.  The one I saw deals in blood disorders ONLY, so he had all the up-to-date research and everything.  The info. about this kind of thing literally changes every day, so it is really important that you see someone who specializes in this alone.  

    I was reassured over and over again by all my doctors that they treat this kind of thing all the time, so don't worry!  You shouldn't have any other complications as long as you get on the right treatment.  AND you still have a little time.  This disorder doesn't really start to be anything serious until sometime during the 7th month.

    Again, I can't stress enough that most doctors don't know anything about this, and I have run into several who have never even heard of it.  Your OB probably falls into the category of not knowing much about it.  My OB doctors immediately told me flat out that they knew nothing about it and that I needed to see a specialist right away.

    Let me know if you have any other questions.  I'm not surprised that you haven't gotten much response, considering how rare this is.  That's why I wanted to give you such a long answer.  

    Hang in there!  Smile 

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    P.S.  I just noticed that this is not your first pregnancy.  You likely didn't have this disorder until recently.  My mom obviously had it both before and after I was born, which is why one of her doctors said that it was impossible that she had me.

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    APA can also cause infertility.  Yes, the treatment is just taking a baby aspirin a day.
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    Hi - Your post showed up in my Google Alerts several times and I see no one has any answers for you.

    Please check the APS Foundation of America, Inc's website at https://www.apsfa.org

    We deal with Antiphospholipid Antibody Syndrome and all of its not so wonderful effects.

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