Factor V Leiden Pregnancy
Studies, Stories, and Support for mothers with FVL
Sunday, August 9, 2015
Summary
It may be helpful to include a summary of our story at the top of our blog.
Losing 3 babies was so sad for my husband & I.
And yet, thanks to treatment and supportive doctors, we were lucky enough to overcome our history & deliver 2 healthy, beautiful full-term babies after diagnosis.
Some doctors don't believe Factor V Leiden (FVL), or other clotting issues, warrant treatment in pregnancy unless the mother has a current or previous clot (usually DVT or PE). I'm not a doctor, but I am grateful that my OB & the 1st MFM specialist were in the camp of "we've seen this work". I know FVL is a common gene. I know it doesn't cause problems for most people who have it. But, it caused problems for me and other FVL women who share the heartache of multiple pregnancy loss.
Other than low birth weight, our 1st 2 pregnancies and babies were healthy. BUT, the next 4 pregnancies resulted in only one living child. 3 of those 4 babies died-- two of which were 2nd trimester losses. That's not just bad luck. That's a maternal factor. That's a problem that needs correcting.
My OB ruled out bacterial infections and fibroids (I have one, but it is fundal, not where implantation occurs). He drew blood to check hormone levels and clotting factors. That's how it was discovered that I am heterozygous FVL.
For the next pregnancy, I took a low dose aspirin until I was within about a month of delivery. I also gave myself a daily shot of anti-coagulants (also a low, prophylactic dose). It worked & our beautiful miracle baby was born at 39 weeks. We could not believe our luck! We were so thrilled that the treatment worked that we had the confidence to try for one more baby. For another 9 months, I did my daily shots and prayed that she too would grow. Again, the blood thinners worked & we held another little miracle in our arms.
While no treatment is guaranteed, I strongly believe that treatment with blood thinners gave us the best possible chance for a baby to keep. May God bless you to find answers and hope on your journey as well.
Tuesday, October 21, 2014
IUGR
Since I'm making this blog public again, it's time for an update. I want to post a few things about my last pregnancy (2nd one on lovenox).
There were many similarities to my 1st lovenox pregnancy. Namely, the anti-coagulant protocol was the same (daily shot of 40 ml lovenox from confirmation of pregnancy until switched to heparin 2x/day shots near delivery + 81mg aspirin until 35 wks.) I had subchorionic hemorrhages (aka SCHs) in both pregnancies that thankfully resolved themselves eventually. Also, there was still a lot of monitoring of the pregnancy including weekly bio-physical profiles in the 3rd trimester. Just like last time, baby was malpositioned, likely due to my large (12 cm) uterine fibroid. Thankfully, this baby followed her sister's example and turned on her own just before the scheduled external cephalic version, so I was able to be induced and deliver vaginally. It was a wonderful birth. We are so lucky to have our little miracles.
Some differences:
1- My MFM moved out of state. The new one was kind and competent, but definitely had a different approach to FVL. He told me at the 1st consultation that he generally subscribes to the ACOG's recommendation that only women with prior clots be treated with injectable bloodthinners in pregnancy. I strongly advocated for treatment with lovenox. (I have a law degree and am emotionally invested, so you can use your imagination here on how difficult I was to convince that my history of recurrent pregnancy loss does not indicate treatment!) When I started citing studies on RPL and genetic thrombophilias, he realized that I was an educated patient and had good reasons not to follow ACOG's recommendations.
2- In part because of the change in MFM and partly because of a lab mix up my first time on lovenox, my anti-factor Xa levels were not checked this pregnancy. We just assumed the dose was adequate last time and continued with that. But in retrospect, perhaps I should have insisted on that again because there was was evidence that it wasn't optimal.
3- The baby's growth slowed significantly as we approached term. Her estimated weight was only in the 10%. (She had measured 50% earlier-- perfectly normal). Her femur length was still average, but her abdominal circumference was only 2.3 percentile. These measurement qualified as Intrauterine Growth Restriction (IUGR). The asymmetrically small abdomen can indicate placental insufficiency. Indeed, when I delivered the OB commented on how small her placenta was. I haven't found any studies linking clotting with a small placenta, but I have read some speculation on this.
Thankfully, she has been busy catching up on her growth since birth.
She is a joy and we are thankful we decided to try again.
She weighed 5lb11oz at birth.
25 percentile for weight at 2 months. She is sweet, healthy & happy.
Tuesday, April 9, 2013
First Birthday
Wednesday, January 16, 2013
Hematologists Perspective
Doctors (both OBs and Hematologists) seem to disagree at times about how to treat Factor V Leiden in pregnancy. I recently ran across these two Q & As from the Baylor College of Medicine "ask the expert" site.
I would urge anyone who's doctors are not willing to treat their clotting issue in order to prevent recurrent pregnancy loss to seek out a different doctor.
Here's what the Hematologist at Baylor says:
Subject: Factor V Leiden
Q: I have had two miscarriages this year (6 and 10 weeks). My ob/gyn ordered a lot of tests and a chromosomal analysis after my second miscarriage. My chromosomal analysis came back completely normal but she said that I have factor V Leiden Mutation (hetero). I was told that this may have caused both of my miscarriages. My doctor said that I needed to see a hematologist who would determine whether I needed to take children's aspirin or a blood thinner the next time I get pregnant. I was referred to a hematologist who emphatically told me that FVL did not cause my miscarriages. The hematologist told me that FVL would not cause me any problems until the very end of my pregnancy, if at all. At this point, I was real upset because I didn't know which doctor was right. To make things worse, I later read the literature that the hematologist gave me and it stated that "All patients with a history of unexplained fetal demise would probably be treated". Another handout she gave me stated "If you are factor V Leiden positive and you have never suffered from a clot, you probably do not need any therapy on a routine basis. Protective anticoagulant therapy may be needed is situations where your risk for developing a clots is increased, such as during pregnancy and the post partum period". I would very much appreciate any insight you can offer.
A: Most studies confirm an association between conditions such as like Factor V Leiden and both early and late miscarriages. Given your history, we would recommend injections of the blood thinner Lovenox 40 mg daily throughout pregnancy (and for 2-3 months post-delivery). Dr. Lawrence Rice or Dr. Kelty Baker would be happy to see you for a consultation, if you wish. The appointment number for both Dr. Rice and Dr. Baker is 713-394-3800.
References: Kupferminc, NEJM 340:9-13,1999 or Walker, J Clin Pathol 53:573-580, 2000.
Q: I recently tested positive for Factor V Leiden, heterozygous. I am EXTREMELY curious about the relationship b/w FVL and late term pregnancy loss. Any information you could provide would be greatly appreciated. I have done a tremendous amt of research on this and all the research says there is a correlation, however, I have heard mixed theories.
I would also like to know your advice on treatment for a subsequent pregnancy if one had suffered a late term loss (lost 10 lb. baby girl at 38 weeks gestation.) I am finding there is also a very gray area on this topic.
I have never suffered any medical problems. I am active and healthy.
A: Most studies confirm an association between thrombophilia (increased incidence of blood clotting such as seen with Factor V Leiden) and both early and late miscarriages. As mentioned above, our expert would recommend treatment with the blood thinner Lovenox 40 mg by injection daily throughout pregnancy and for 2-3 months after delivery.
Thursday, August 16, 2012
Grieving
A friend I met online lost her baby boy this month. She was 2 months along.
She had already had a hard journey- infertility, a very early miscarriage, undergoing surgery & IVF.
I've been so sad for her.
Losing a baby to miscarriage is such a hard thing. Even those who have been through it may not understand the unique aspects of your challenges. Every loss is so difficult, but also so different.
I have a baby in my arms & she fills my life with joy.
But those babies I carried within me I still carry in my heart.
"We don't move on & forget, we move forward & remember..." -Viki Pond
Tuesday, April 24, 2012
Worth it!
Our little miracle is here!
This was my 7th pregnancy, 4th live birth (3 losses) and 1st pregnancy on anticoagulants.
Things went very smoothly with the delivery & my bleeding was less than OB expected.
We are so relieved that she's here. And I don't mind at all the postpartum shots. Once a day seems like less trouble than the twice a day heparin (I transitioned at 36 wks in preparation for delivery since heparin is out of your system in half the time so there's less risk of hemorrhage). Or maybe I don't mind them because I am so THRILLED that the blood thinners did their job in helping us keep this one. She sure is sweet.
Thursday, January 19, 2012
Kick counts
Tracking your baby's movements at approximately the same time every day is an inexpensive, non-invasive, effective way to monitor your baby's well being. It can potentially catch a problem before it affects the baby's heart rate. Kick counts are generally recommended for mothers starting at 28 wks. Mothers with high-risk pregnancies are admonished to start them at 24-26 wks. Here's a site with more information. And here's a convenient chart for recording your kick counts.
Many doctors will also do regular Biophysical profiles at the end of a high-risk pregnancy to check baby's movements, heart rate & responsiveness.
But for daily assurrance that baby is doing well, a kick count can be more informative than a doppler heart monitor. And what tired pregnant mom doesn't want a good reason to lie down for a bit & bond with her baby?
Many doctors will also do regular Biophysical profiles at the end of a high-risk pregnancy to check baby's movements, heart rate & responsiveness.
But for daily assurrance that baby is doing well, a kick count can be more informative than a doppler heart monitor. And what tired pregnant mom doesn't want a good reason to lie down for a bit & bond with her baby?
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