Clotting mutations and trying again?

[teresatolman]

I have had severe preelampsia with every pregnancy, 4 in total. Each time it has just gotten earlier and more severe. With my last pregnancy, I was 22 weeks and my daughter was stillborn. Afterwards, I was tested for several blood clotting problems. Apparently they are finding several links that support the fact that many women who develop subsequent cases of pre-e have an underlying clotting mutation. While I was completely LIVID that I had never been checked for this before and my baby was dead, I was also relieved to learn that I had not 1 but 2 different mutations that were probably predisposing me to pre-e. I have a prothrombin mutation as well as an MTHFR mutation. As far as I can tell after hours of late night computer research I have a pretty good chance of having a positive pregnancy outcome if I take blood thinners such as heparin the next time I become pregnant.

My husband and I are just absolutely terrified. The last thing I want is to go through what I went through when I lost Hannah. It was devastating. I am still not recovered from it, nor will I ever fully be. At the same time I feel very strongly that had I been on heparin and baby aspirin that maybe my outcome would have been different. My husband just wants to adopt but my heart is just not ready to give this up.

Have any of you had a similar experience or have any other information related to this? Thanks so much!

[danielsmom]

I am so sorry for your loss. My heart goes out to you. I'm also appalled that you have had pre-e with 4 pregnancies and are just now being tested for things that make you predisposed to it. I think all pregnant women ought to have these panels run on their blood, 1st pregnancy included. I don't know if it's the insurance companies pushing back or what, but it would probably save them money in the long run... and save a lot of families heartache.

Do you mind me asking when pre-e reared its ugly head in your previous pregnancies? And have you had an MFM (maternal-fetal medicine specialist) involved? If not, I'd do it, and ask them if you have had ALL the bloodwork done. Also do your previous placenta pathology reports indicate large and/or clotted placentas? Did you have small babies? I have 1 son and his growth restriction showed up at 20 weeks when the placenta started to clot and grow to compensate. I ended up with HELLP & severe pre-e at 27 weeks. My MFM and OB agree that we'd start 5+ mg of folic acid a day and a baby asprin before pregnant, and heparin or lovenox after a positive pregnancy test.

Here's an article: http://www.ncbi.nlm.nih.gov/pubmed/20034330

[angieb]

I didn't have a clotting disorder but my MFM wanted to do lovenox (a version of heparin) and LDA anyway because of how early I got sick (HELLP at 23 weeks) and because our daughter had severe growth restriction (less than 1% when she was born). So far, I've made it 3 weeks farther (26 wks today) with no signs of pre-eclampsia or anything- my blood pressure is good without meds- and at the last growth ultrasound, our baby was measuring at least 8 days ahead.

I'm very sorry for the loss of your Hannah. It is really hard TTC after a loss, and even harder being pregnant again after a loss.

There's an article in the "news, articles, etc" section of the forum that indicates a study where they found a benefit of lovenox/heparin for high risk women even without blood clotting disorders, not sure if that's the same one Danielsmom linked or not.

[michelarea]

Hi! After my first pregnancy (Viola was born at 32 +3, iugr 1335 grams, due to sudden onset of hellp and fetal indicators) I discovered I have borderline lupus anticoagulant, so clotting disorder altough in a mild titre. I started LDA from preconception and Lovenox from 15 weeks (my doctors were not sure about giving me lovenox and they decided to do so once they discovered my uterine arteries were pretty behind). I am now almost 36 weeks along in good shape, no high bp and the baby is growing well. She is not big (estimated 2 kg two weeks ago, I have a new scan tomorrow) but I am a petite woman as well so it may be related to an imperfect placenta or not. My uterine arteries are improving weeks after weeks, so it seems that lovenox is still working. As a conclusione, I may not have overcome my condition 100% but I got very positive results and improvements

[kbielec]

I delivered our daughter Annabelle three years ago this coming March at 26 weeks due to HELLP syndrome, she also was IUGR because of the clots and bad blood flow in the cord. I had the blood panels run and they found out I had one mutation for Factor V and one for MTHFR. We were given the green light after my third liver 24 hour urine test came back perfect. My liver is back to normal, my BP was back to normal about 5 days after delivery.
I have been TTC since June "10 and have been on 1 prenatal, 1 lda and 1 folic acid each day since we started trying. Upon getting a positive pregnancy test I'll start lovenox. My MFM said if nothing else these things will "buy some time" and help me get further along than before...I guess at some point I had to decide if I could take the risk because I want a baby. It's very hard...

[lauchlan]

We found out I had 2 mutations of MTHFR after having preeclampsia with my 1st pregnancy & then a miscarriage. I was put on 4 mg of Folic Acid and LDA while TTC and then stopped LDA and added Lovenox during my pregnancy. While there is no hard proof out there that Lovenox prevents Preeclampsia, I had my daughter full term and HUGE (9 1/2 lbs), and I am 100% confident that the Folic Acid prior to my pregnancy as well as the Lovenox during was what made the difference.

It's such a difficult decision to make... we spent 4 years on the fence regarding if we could go through it again, and then had issues with the miscarriage and infertility. Both sucked, but if it weren't for the miscarriage & then my RE suggesting we see a Hematologist, we would have never gotten the testing that eventually found the clotting disorder.

My advice is always to seek more information. Consult with a Hematologist as well as a MFM and see how they would treat a potential future pregnancy. Ask lots of questions.

So sorry about the loss of your son. Best wishes going forward.

[riehlism]

I'm so sorry for your loss and your incredible PE history.

I have MTHFR gene mutation. However, about 30% of the human population has this mutation. The current consensus in literature suggests it plays little in the role of preeclampsia with respect to the kind of clot formed. Plus, if this gene is present in 30% of the population, we would expect to hear more stories like ours.

MTHFR affects the homocysteine levels in your blood, which in turn affects folic acid uptake, which in turn could possibly thicken blood making your more susceptible to blood clotting. But as you can see, it's more of a secondary or tertiary effect.

I am taking 1mg Folic Acid 4x/day to help offset MTHFR, and 1 tablet Low Dose Aspirin (81mg). The thought is that the baby aspirin helps keep the blood more fluid and less thick so it less likely to form clots.

Take a gander at this. I think the text is better at explaining it than the video. So I suggest you read before watching the video. This was a meta-analysis by the journal of obgyn last july 2010...so a pretty recent study, that's well done.

http://www.thedoctorschannel.com/video/3510.html