Multiple Miscarriages and Factor V

I am shocked it has taken five miscarriages for a doctor to come to this conclusion. I had one stillbirth and one miscarriage and then went to Dr. Hilgers of the Pope Paul VI Institute. He found several problems that he was able to treat and I now have a beautiful two month old daughter. I would recommend going to his web sight and find a doctor he has trained. He is known all over the world for his work in fertility issues and has trained doctors the world over. His work is cutting edge.

Hi N. - I was diagnosed with Factor V Leiden Deficiency Mutation in June of 1998 when I developed a blood clot in my lung due to birth control pills. Your sister needs to consult with a hematologist if she has not already, and when she is ready to try to conceive again, she needs to talk with a perinatologist, which is a high risk OB. I was very fortunate to not have any miscarriages, but I owe that to my being informed. I was (and still am) on coumadin, and needed to be switched to low molecular weight heparin immediately after finding out I was pregnant. Some, if not most, drs. now have women go on the heparin BEFORE getting pg. As far as your sister's dr. saying the miscarriages aren't from Factor V - she needs another dr. because many women have had miscarriages from the first month up until 8 months due to Factor V. The heparin shots are def. not fun and they hurt, but it is SO worth it. With both of my boys, I was seen at Mayo in Rochester and had 3-4 ultrasounds with each, went in for weekly stress tests the last 2 months of the pregnancies. I also was induced at 38 1/2 weeks because I was told it is dangerous to go into labor and have the baby while you are on the heparin. As a side note, if your sister ever decides she wants to be on birth control, there are really no options. My dr. said that the Depo shot was okay, but now they are finding out that it probably isn't. If you or your sister care to contact me, my email is ____@____.com

I also have Factor V Leiden - heterozygous. I didn't find out until after I already had my 2 children. I also never had any miscarriages & had already decided not to have any more children. I would recommend that she see a specialist. Neither my OB, nor my family doctor could have helped me like my hematologist has. They are more equipped to deal with this and could work with her OB to help her have a successful pregnancy. I wish her well.

I have a cousin who has Factor V and she's has two healthy pregnancy's and no miscarriages. Because she knew of this problem before getting pregnant (several aunts and cousins in our family carry this gene so she knew to get tested) her dr. knew what to do from the start. She would have to give herself shots of heparin daily - which I believe is a blood thinner to help with the clotting.

I agree with the other posters that she needs to see a specialist so that she hopefully does not have to experience the pain she has so many times!

I wish the best for your sister!

Nikki

Is she seeking advice from an infertility doctor at this point?

I am also Factor V. I found out in my first pregnancy upon detailed blood tests and referred to a specialist right away. My pregnancies were monitored extensively and I was on baby aspirin and heparin. My first two pregnancies went full term, my third miscarried at 10 weeks. I would highly encourage your sister to see a specialist. I don't know where you live, but there is a specialist at Children's / Froedtert in Milwaukee. It seems like there is a story here which is not being addressed by her current doctor.

A friend of mine had two first trimester miscarriages within 6 months. They found that for some reason her insulin levels got all out of whack when she was pregnant, but she isn't diabetic and it wasn't gestational diabetes. They put her on a drug that diabetics take (safe for pregnancy)and now she has had 2 successful pregnancies.

I also have the Factor V Leiden mutation - hetero. The reason we know is my mother was on hormone replacement and ended up with a clot in her lung. I had 2 children prior to finding out and 1 after with no complications. My doctor didn't feel it necessary to put me on asprin or heperin until after my son was born because I hadn't had any problems with pregnancy.

I did however take a baby asprin a day from the time I found out I was pregnant until the end. My doctor said it wouldn't hurt anything and I felt more comfortable doing it, so I did it.

I agree with those who said that she needs a Hemotologist. A normal OB isn't going to know how to deal with the Factor V.

Although I know nothing about Factor V - I have struggled through the years with pregnancy and babies. Always wanted a bunch... and ideally - three. We lost our first to m/c and began infertility talk when I didn't ovulate afterwards. Long story - but over the course of six years, I had four miscarriages and a full term still birth - and all but the first under the very caring, watchful eye of my precious, outrageously supportive ob/gyn. We never determined why - and I took it all very hard. We had one child in the midst of the losses - and he was (and still is) my greatest blessing! He helped us (husband and I) through some very dark moments.

I was fortunate to have encountered two awesome folks outside the realm of my everyday life - and though they are possibly more related to my situation - I would encourage this: she should absolutely seek another doc's opinion, consider highly talking with infertility doctors, n.p.'s or ?? And, get to a pregnancy and infant loss support group. She is so very fortunate to have a loving and caring sister - but she would so benefit by visiting with other moms of loss. We began a group at my church - and it's seven years' strong! And it was during my attendance at group that I became prenant with our second child - and after we moved into a smaller home... VERY satisfied with our family ~ that I became pregnant without the help of infertility or consultation with our third 'take home baby'.

Also, some great resources for her... www.missinggrace.org - fantastic mom and foundation for pregnancy and infant loss - or www.share.org .

She's touched my heart through your post - and I will keep her in my prayers! I'd love to hear how she does! In which part of the country does she live?

T.

um did she ever consider a 2nd or 3rd opinion??.....theres more than one doctor out there.this one doesnt seem to concerned.good luck....never heard of the v factor-she might have more going on.get more opinions....

If she hasn't already, I would recommend that your sister go to a fertility specialist. There are blood tests they can take that can determine why the embryo is not implanting correctly. She may be able to at least eliminate some variables that could be the root of the problem.

I have had 3 miscarriages (this far) and carried our 2nd and 5th pregnancy to term. This is all in the 5 1/2 years we've beeb married.

We went to the regular doc and they sent us to a specialist when they couldn't find a single thing wrong. Well that guy was a complete jerk and wouldn't listen to a word we said. All he wanted to do were really expensive tests and to put me on heparin shots "BECAUSE IT"S SOMETHING YOU CAN DO..." were his exact words. That test came back fine saying I DIDN"T need that!!! He was just out to make money! So we never went back!

Then we went to a natural path doc (Dr. Paul) and he dicovered it was our diets that were causing us to miscarry. After following his advice (to a T) we got pregnant 6 months after first meeting with him. (This was our 1st month trying again!!!) We carried him to term and he is now our 22 month old. That was our 5th pregnancy.

If your sister would be interested in talking to him, I can get you his number. He is living in South Dakota but does come to St Cloud from time to time.

He is EXTREMELY knowledgable in many areas. He got into this because when he was young (I believe in his early 20's) the doctors told him to go home and settle his affaris because he was going to dye shortly from cancer. He went to Mexico and got cured and decided to learn as much as he could to help other people out. He is very passionate about what he does and he has helped lots of people. He even cured my dad from colon cancer. He helped my old daycare girl with ear infections. He helped us have a baby!

I was diagnosed with Factor V when I was pregnant with my first pregnancy. I have three children and have had one miscarriage and it was in the first trimester. I did a lot of research into this. First, she has to determine if she is a hetero carrier or a homo. The first means she only has one strain and the second means she has two. The homo carrier is usually the problem with miscarriages. She can have miscarriages at any time in her pregnancy, because Factor V causes her to clot more easily and she can develp clots in the umbilical cord, which causes her to lose the baby. She really needs to consult with a perinatologist, not an OB. As soon as my nurse midwife found out about my blood condition, she referred me to a perinatologist because it is considered a high risk pregnancy. They will either put her on baby aspirin or heparin depending on what kind of carrier she is. I would recommend that as soon as she finds out she is pregnant, to start a baby aspirin a day until she sees her perinatologist. It will reduce her chances of a miscarriage, and a baby aspirin does not hurt the developing fetus. If your sister would like to chat with me feel free to give her my email address. ____@____.com

I am positive for Factor V Leiden heterozygous(per a blood test) and was diagnosed before I started trying to get pregnant. My dad's side of the family had a history of clost and we all have gotten blood tests to check for it.
Factor V will cause miscarriages in any trimester. I started on Heparin shots at 5-6 weeks with all three of my kids to try and prevent miscarriages. Factor V is a real and serious risk for pregnancy and is likely a very real factor of the miscarriages. Your sister needs a new OBGYN and likely at some point possibly a hemotologist.
I see an OB practice that has extensive knowledge of Factor V (we just had our third child 1-14-09) and they have offices in Maple Grove, Edina and Robbinsdale. Your sister most likely should be taking some form of a blood thinner such as Heparin Shots as soon as she is confirmed pregnant.
I am happy to share more info and make recommendations for anything if you'd like. You are free to contact me directly if you'd like at ____@____.com.
Sincerely,
D.

Hi N.~ I also have a clotting disorder and had miscarriages prior to knowing. I just had a beautiful baby girl 6 weeks ago. I was on baby aspirin, lovenox (then heparin) and folic acid. I know several people with these problems and they had miscarriages and went on to have successful pregnancies once getting the help. Where does your sister live? I have a great clinic in Woodbury that helped me so much during this, they understand these blood disorders (when many other doctors I have seen seem to be clueless or skeptical)... If you want more information, let me know! ____@____.com

I know that I am a little late responding, but I do have Factor V and have never had a miscarriage. I have two daughters, 5 and 1-1/2. My first daughter was born prematurely due to the Factor V. We were actually very lucky in the fact that they had us come back for a follow up sonogram because they had found a cyst on her brain. The cyst resolved itself, but at the follow up sonogram, they realized that she was much smaller than she should have been. This caused the doctors to recommend us seeing a specialist who monitored the baby very closely and decided to do an emergency C-Section at 28 weeks. With my second child, knowing that I have Factor V, I had to take Lovenox (a blood thinner, injected) every day during the pregnancy and for about 6 weeks postpartum. I'm not sure about miscarriage rates with Factor V, but seem to recall reading something about it in my Parents magazine about a month or so ago. I've also heard of women taking the blood thinners while trying to conceive. This may be an option. I hope that your sister finds her answers soon.