Miscarriage, Pregnancy and Factor V Leiden

July 30, 2010

I have had a few people ask if i could elaborate further on the causes of my miscarriages.  I know they were nervous to ask because this is a sensitive subject but honestly, if you have any questions – ask away.  I am very emotional about it but I don’t mind answering and talking about miscarriage and my journey. It is not talked about enough – and when I was deep into it I felt so alone.  I will not be a contributor to stuffing this in the closet – so as hard as it is to publish my feelings sometimes for people to read – I will.

had a few issues that contributed to my miscarriages. At this point it is hard to pin point if it was just one or a combination of the three.  I had a luteal phase and progesterone deficiency (I will blog later on how that was figured out and what I did to fix it), undiagnosed celiac disease (for 5 of my 10 miscarriages and 2 full term live births) and Factor V Leiden – which I will focus on in this post.

If you read my post on my Journey Through 10 Miscarriages you will know that I discovered I had Factor V Leiden when I had a stroke when I was 8 months pregnant with my second child and two weeks later I was induced and she was born.  Nothing else was spoken about Factor V Leiden until we lost Triton. Factor V Leiden is not a disease, it is not something that can be ‘cured’.  It is an inherited genetic disorder that can increase your chances for developing blood clots (thrombophilia) and since any pregnant woman or woman on estrogen-based birth control is at an increased risk anyways – having Factor V Leiden can be quite dangerous for a pregnant woman.

While I was trying to conceive I was taking a 75miligram tablet of aspirin (baby aspirin) a day to help thin my blood. I was basal body temping and was an expert at this point so i knew the exact date of implantation and the first day a pregnancy test would become positive.  When it did i went to the doctor to confirm and switched off the aspirin and started right away taking a blood thinner injection (Fragmin) that I would take every day until 8 weeks postpartum. This was my daily needle that I injected myself into my lower abdomen (under the belly button) or the upper outer thighs:

Fragmin

One of the side effects of injecting a blood thinner was the bruises they caused. I had to mention to every nurse or doctor or person who saw my pregnant belly that I was on this medication because the whole lower part of my stomach was covered in bruises that looked like this:

Fragmin bruises

When it came to labor – it was tricky. I would not be able to safely go into labor on my own because – well, when you deliver you loose blood and being on a blood thinner i was at risk for losing a lot of blood. I was going to have another induction at around 38 weeks, when baby looked good and when my cervix started showing changes of dialation.  I started dialating early around 35 weeks so i was on bed rest so not to go into labor.

Induction was set and i had to go off the blood thinner 12 hours before the induction was started. The tricky part was i could not go over 24 hours without the drug or I would risk clotting again and potentially having a stroke or pulmonary embolism. This drug was protecting me and the baby.
After 5 hours of hard core induction Baby E was born – healthy & perfect and I was then placed back on the Fragmin and continued after the postpartum risk for clots which was 8 weeks for me.
Baby E 2 minutes old

At times I wished that i didnt have to take this medication.  It wasnt really fun or easy to inject myself every day and could not miss it or risk something bad happening to baby or myself. It was also not cheap -$10 per needle x 44wks.  I am so grateful for my OB/GYN’s and Fragmin because they protected myself and Baby E.

I am still taking a baby aspirin daily and will need to for the rest of my life. I am also not able to take any estrogen-based birth control because that will be far too risky with Factor V Leiden.  If we ever want to have another baby we will have to be just as careful and meticulous and will need to have the injections and induction. 

Disclaimer: This post is not intended to be medical advice. This is all based on my specific case and treatment outlined by my doctors.
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{ 23 comments… read them below or add one }

1 I'm Molly July 30, 2010 at 9:36 am

Seriously, you are an amazing person for coming through all this better on the other side!

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2 Devan @ Accustomed Chaos July 30, 2010 at 10:11 am

Thank you so much!! ::smooches:: ♥

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3 Kendra July 30, 2010 at 11:55 am

Wow. thank you for sharing this. I have a real close friend who has been through miscarriage and I can't even imagine. You are so strong!

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4 ModernMom July 30, 2010 at 10:20 pm

Oh sweetie, I have not been reading you that long and had no idea. Hugs to you. You are and incredibly strong and wonderful Mom!

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5 Debbie's L'Bri July 31, 2010 at 10:14 pm

You are so brave… Prayers for you..

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6 Suzanne July 22, 2011 at 10:13 pm

I really appreciate you sharing your story. I am 31 years old, married and wanting to have a baby in the near future. I found out I had Factor V when I was 19 years old, because my older sister developed DVT while pregnant due to Factor V and the doc recommended that my other sister and I get tested. So I haven’t ever used birth control, I don’t smoke, but I am concerned if being over 30 will raise my risk of miscarriage or complications. My other sister had a baby at 21 and took Heparin shots every day and the baby was fine. I guess I am just scared having a 1st pregnancy over 30. Any thoughts?

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7 Devan McGuinness
Twitter:
July 24, 2011 at 1:40 am

Hi Suzanne

I am not a medical professional so i do suggest you speak to your doctor but as far as what i know – your risks should not be any higher because of your age {most age-related pregnancy complications are not an issue unless you are 35yrs old or above}

As far as your FVL – if you have no history of clots your doctor might just suggest you take a low dose aspirin daily while you try to conceive and for the duration of your pregnancy. most wont treat with heparin (fragmin) unless you have a history of clots and/or multiple miscarriages.

wishing you all the best!

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8 Hayley September 16, 2011 at 5:35 am

What an inspiration! I have had 2 healthy babies, and 2 miscarriages this past year one being at nearly 16 weeks, a little boy I named Jayden~Lee. I had my bloods tested for all sorts of things (as I lost my second so late, they normally test after 3 miscarriages) and it came back I have Factor V Leiden. I am now on aspirin until I become pregnant and then I start on the injections every day. Do they hurt? I’m really dreading them! Good luck to all who has the same condition and sorry for any losses it has caused to others xx

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9 Hayley September 30, 2011 at 4:20 pm

I’m the same poster as above ^^^ Just updating.. I’ve just found out that I am pregnant again after only 1 month in trying! ( 13 weeks after last loss) I am still taking asprin, also I have been prescribed a hormone pessary to take at night until I have my scheduled ultrasound in 2 weeks time (6-7-8 weeks). Then I will start the injections. As a precaution to myself I am taking pregna-care tablets. The reason is with my 2 healthy babies I took it, and with the last 2 I didnt (which I lost), I don’t no if there is any link but I’m taking them for my own peace of mind. Good luck to everyone or anyone whos in the same boat x

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10 Hayley December 5, 2011 at 3:14 pm

same poster as above again! ok so I am now 13+3 weeks pregnant, all is going well up to now, I have had regular scans since 6 weeks gestation (every 2 weeks) I started my Fragmin 5000 from 6 weeks aswell (once pregnancy was confirmed) along with my asprin (150mg) . I discontinued my progesterone pessarys (cylogest) at 12 weeks. Also I needed to write about the pregna-care tablets, do not take them if you have or may have a clotting disorder they actually thicken the blood due to the vitamin k. I only took around 2/3 tablets before researching.
If anyone has had a positive experience and had a healthy baby in taking the injections + asprin, please comment, ive got notifications set to email if anyone has something to share, Thankyou I would love to hear from you!

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11 Devan @ Accustomed Chaos
Twitter:
December 5, 2011 at 3:39 pm

Hi Haley – thanks for updating! Glad to hear your pregnancy is progressing well. I was on both aspirin and Fragmin for my last babe. Wishing you all the best & keep me posted!

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12 Hayley May 4, 2013 at 3:38 pm

Hi, (Im the same poster as above!) Well my pregnancy went very well apart from he came out with style ‘face presentation!’ he is now a beautiful happy healthy 10 1/2 month old baby! wishing all the very best to the nervous pregnant ladies who have factor v! just take every day 1 at a time, fell confident and positive, you will be well looked after! x

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13 Tami January 27, 2012 at 1:09 pm

I am 25 years old and this past year I landed in the hospital 2x with blood clots (DVT and PE) and I found out that I have F5L I have been doing some browsing online and came across your site and am very happy to see that you and your baby were healthy I was just wondering if they tested or can test baby E to see if F5L was passed on and what they have you do if it is or if there were ways to prevent that from happening

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14 HALEYG June 1, 2012 at 11:07 am

I ALSO HAVE FACTOR V OF LEIDEN AND MY DOCTOR IS STARTING ME ON THE SHOTS BUT I WAS WONDERING HOW YOUR LABOR WAS? MAIN QUESTION IS WERE YOU ABLE TO GET AN EPIDURAL? I WAS TOLD THAT I COULD NOT BECAUSE IT INCREASED THE RISK OF CLOTS

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15 Devan McGuinness
Twitter:
June 1, 2012 at 11:11 am

Hi Hailey

I did have an epidural and my labor was fine. The main thing (from what my doctors say and the reading I have done) is it’s not always safe to go into labor / deliver while ON the fragmin (because you will have an increase chance of bleeding) — that’s why I was induced. I went off the meds for 6 hours and was induced (hard induction because I couldn’t be off the Fragmin for more than 12-18 hours) and then was given another shot after right after birth. I continued the shots for 8 weeks postpartum as well.

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16 Monika
Twitter:
April 16, 2013 at 7:19 pm

Hi,
I got positive test for pregnancy and i missed my periods for 1 week. I had three miscarriages because of factor v leiden. I am going to the doctor tomorrow. I hope they will put me on medicine immediately.

I am worried and hope that nothing wrong happened with the baby so far.
Thanks

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17 Devan McGuinness
Twitter:
April 17, 2013 at 9:53 am

Sending love to you, Monika! If you’ve been diagnosed with FVL, be sure to ask your doctor about low-dose aspirin therapy during pregnancy. Wishing you the best!

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18 Karthiga Baskaran June 21, 2012 at 3:45 am

You are so brave and u inspired me a lot. I was recently diagonalized with V factor after having 3 miscarriages and was worried. Hoping so soon I will share the same good news. :)

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19 Caz R August 23, 2012 at 6:31 pm

Dear Hayley

I was diagnosed with Factor 5 Leiden today.
I have a 3 year old little boy and have since had 3 miscarraiges.
I took Pregnancare whilst pregnacare with my son and all was fine but am now really worried.
I want to start trying again straight away but of course having already had my consultation I cant now ask the questions I would like. I will just have to make an appt with my GP and hope he knows the answer.
I also didnt have the best natural birth experience the first time round and was seriously considering having a c-section but not sure that would be the best option now.
This is a very worrying time but it is good to hear other peoples experiences.

Carolyn x

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20 Krissy December 24, 2012 at 12:21 am

Not to sound forward but would you do it again? I am struggling with this so much. I feel if there is anyone here on earth that would know what I am going through it would be you. I found out I have FVL about two weeks before I found out I was pregnant. I was tested because after my fathers 2nd DVT he was tested and was positive. Since I was a female his doctor suggested I get tested as well. Starting my pregnancy we didn’t think it was going to be such a big deal because I have never had a DVT. However in my 2nd trimester my right leg started swelling. An ultra sound confirmed I had a DVT’ but here was the kicker, it was already encapsulated. Which means it was very old. 9 years earlier I had been in a terrible accident and broke the femur in that leg, Best guesses are even thought I was on heparin after the accident I still formed a clot. Makes a lot of sense now looking back. I was in a lot of pain for a log time after the accident and that perplexed my orthopedic surgeon. Anyway in my second trimester I started back on Heparin. I was induced and had a very tricky labor. I did end up delivering vaginally but if I hadn’t gotten him out when I did they were going to open me up. I don’t think I need to tell you what that meant. He is four now and so happy and healthy. He dis test positive for FVL at 1 day old. Since then I had a second superficial clot. That I caught right before it entered my deep vein system. I was lucky because I knew what I was looking for. I am not sure why I am telling you all of this. You certainly don’t need to know it to answer my question. I guess I just need to talk to someone else who knows what I am going through. You know what that fear is like. So I guess knowing that fear would you do it again?

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21 Devan McGuinness
Twitter:
December 27, 2012 at 11:17 am

Hi Krissy

I am so sorry for all the struggles you’ve been through — it’s so not easy and it’s hard not to really wish for the easier pregnancies so many others have.

To answer your question, yes I would do it again — we’re actually trying to have another baby now and this time I feel so much more prepared for what to expect now that i’ve been diagnosed with FVL and know how to manage during pregnancy, I feel much more calm about it all.

sending love!

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22 Rebecca December 29, 2012 at 11:38 am

Thank you for this post! I had a miscarriage at 11.5 weeks. Luckily I found out I had factor v before any more miscarriages. You are a true saint in my book! My husband and I are trying again. I have a specialist appointment set to discuss what I will need to do moving further. I’m currently on baby aspirin. I’m not sure if I just had implantation bleeding (6 days post ovulation and ttc) or if my cycle is still confused from the d&c. In any case, I’ll know soon if I’m pregnant again. I really want to be and am so thankful to have found your inspirational blog!

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23 Susie March 24, 2013 at 9:09 pm

I am a 52 year old breast cancer survivor who has just been told I too have factor V Leiden … I just wanted to share that I have had three pregnancys and three births! No problems… I also took birth control pills years ago and smoked! I am to sure if I just dodged a bullet, or what! My daughter is expecting in Sept and will be tested tomorrow for the mutation. I pray all is well!

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