Factor 5 V Leiden..

[ElmoBumpToBe]

I have known since i was a teenager that im hetorozygous for the factor 5 v leiden. It has never affected me, i just can only take a certain type of contraceptive pill and should take aspirin and wear ted stockings on long haul flights and during the latter stages of pregnancy.

After i had my son i had to have an injection of clexane every day for 6 weeks to avoid me developing a blood clot.

Nobody ever suggested that my sons father be tested so he wasnt.

I now have a new partner and we are expecting a baby, he has been tested and he too is hetorozygous wich means there is a 1 in 4 chance that our baby will be homozygous, which is more serious but we dont know much more than that and there is little on the internet,

Is anyone here hetorozygous? Has a child who is?? Can you shed any light on what we can expect and just how serious it actually is?

Also, where ever i look, women who are hetorozygous like me seem to be taking clexane or aspirin through out the pregnancy yet i am not?? Would taking it through out pregnancy reduce my risk of misscarriage or still birth? x

 

[price27]

hi

Asking for advice and getting un-biased answers is impossible, especially when asking mothers for their opinions. At the end of the day it is your choice and with help from consultants, doctors, midwives and discussions with your husband, I am sure you will do the 'right' thing!

Anyway here is my history and my biased opinion on what you should do!.....
Unfortunatly my daughter was stillborn last xmas. I did not know I carried the recessive gene for factor 5 v leiden before hand, until a full post mortem was carried out. My daughter was very underweight at 36 weeks gestation, however was measuring fine during routine 20 week scan and antenatal appoints. Her frame was good but unfortunatly she had not put on any meat! My husband and I both believe she must of just been hanging on in there for weeks. I never felt any kicks and didnt know what I was missing given she was my first child. Her being underweight together with many small clots in the placenta, and the fact I am also heterozygous for carrying this gene, allowed my consultant to inform me of possible medication for subsequent pregnancies. May I also add my blood pressure was elevated but not worryingly so and I also had frequent migraines, visual auras too but urine was always fine so pre-eclampsia was ruled out! I have suffered migraines for years even before getting pregnant!

The advice given to me was that asprin should help with some of the issues mentioned above and after 12 weeks gestation, it was my choice to inject clexane (heparin) or not. It was my choice because I am young, active, fit, not overweight or obese and only a carrier for the gene. I originally thought I would say yes only to asprin but as the time neared in this second pregnancy for me to decide on clexane, I opted for a 'yes'! I thought why would I not! Even though I am not classed as high risk for this blood clotting disorder, I thought given the past 12 months I would do anything and everything possible to ensure I can carry my child home and hold him/her in my arms...ALIVE!!!

And so now I am 35 weeks pregnant, approaching the time when I lost my daughter in my last pregnancy just 11 months ago. I can say that injecting every day since 12 weeks gestation has been so easy and this pregnancy has been so different! NO headaches at all! No blood pressure concerns!! Baby has shown amazing growth and is at the top end of all of the scales, so much so that they are keeping an eye on for developing gestational diabetes! I now know what kicks and movements are and what I shouldve been feeling the first time around. I will stop the asprin at 36 weeks and continue the clexane till teh day before I am induced (10th November). I will then continue the clexane after giving birth.

I am so nervous and this week is a big hurdle for me to get over. However, I am hoping the next few weeks go fine and that is thanks to great advice and guidance from my midwife and consultant. The medication has clearly done wonders so far!

At the end of the day it is your choice!! Listen to others but act on your own instincts!

 

[petitpas]

Hello ElmoB2B,
I am Factor V heterozygous. I was always told that I would be kept an eye on when pregnant, especially with extra growth scans towards the end to keep an eye on clots in the placenta that could be starving the baby. This was even before I had any clots.

Since I have already suffered from clots (DVT and PE) I am at high risk of having further episodes during pregnancy and after giving birth so I need the low molecular weight heparin (e.g. clexane, tinzaparin) shots. I think that generally the advice given is that if you are 'only' heterozygous and have not had any previous clotting events you are not necessarily given the shots. Aspirin, however, is recommended I believe (and in my case, I take both during pregnancy). In any case, you should be seen by consultant due to the risk of placental clots and also because you are at higher risk for pre-eclampsia. Have you got an appointment with an obstetrician yet? If not, you should ask your midwife to arrange one.
The following green top guideline outlines the prevention for thrombosis during pregnancy.
https://www.rcog.org.uk/files/rcog-corp/GT37ReducingRiskThrombo.pdf

It really is best if you can see a consultant as soon as possible and discuss your specific with them. Wave the guideline in the midwife's face if you have to (sorry, don't mean to offend any midwives on here as mine is very clued up but you never know)

Wishing you all the best with your pregnancies xxx

 

[ElmoBumpToBe]

Price27 im so sorry for your loss, cant begin to imagine the heart break, good to hear they are taking good care of you this time around x

Thanks to both of you for your advice. To be honest i feel that where i live i am receiving poor care both this time and with my son. I have seen the consultant, he has not once mentioned that i should be taking aspirin, nore did they when i had my son.

There has also been no mention of me receiving extra scans toward the end to check for clots etc. Its something i suspect i will have to pay for myself privately.

I injected clexane for 6 weeks after my sons birth and will be doing the same after this baby.

Im of course alot more scared this time because there is the chance that the baby is not only hetorozygous but homozygous and could develop a clot while in the womb.

And although i have had one healthy pregnancy i cant help but feel that i wont be lucky enough to have 2 without any treatment.

Thanks for the guidelines i think i will need them to put in front of the consultant. He didnt even know how many weeks i was, i corrected him while we were there but when i got home and looked at my notes, he has still put me down asw 2 weeks further along than i am!! x

 

[ElmoBumpToBe]

Well i saw the consultant this morning. This one was much more helpfull and i have come home with 8 weeks worth of clexane injections that i will start taking tonight.

Just have to wait for the appointment with the heamatologist now to find out what it could mean for when the baby is born if he or she IS homozygous x

 

[petitpas]

Hi Elmo,

I'm glad this consultant was a lot more informed and helpful! I think that for the beginning there won't be too much worry for your child after he/she is born, but in the long term there will be questions of how to prevent anything serious from happening. Even if your child is homozygous you will have a number of years to figure things out (clots are very rare in children) and there are quite a few developments in the pipeline to make long-term blood thinning safer and more comfortable (i.e. less needles, less testing). All in all, I'd say you are all clued up now and it sounds like you are receiving good care xxx

 

[ElmoBumpToBe]

Hi petitpas, thank you for that, i cant say i knew that clots were very rare in children and that has really put my mind at rest, i had visions of the baby developing a blood clot and dying suddenly, all very frightening as you can imagine!

I think all i can do now is look after myself and look forward to my babies arrival!

xx

 

[petitpas]

Indeed! Look after yourself and you can deal with the baby's genes later.
If you do want to read up about it, the following website has some statistics about thrombosis incidence in young children with Factor V Leiden:
https://www.stoptheclot.org/documents/FactorVLeiden-lw.pdf

All the best to you! xxx

 

[momomom]

I am also heterozygous for Factor V Leiden. I went for a consult earlier this year with the high-risk OB and she is going to have me take lovenox for the 2nd and 3rd trimester. I had a placental abruption when I was pregnant with my daughter 11 years ago and a clot was found but they didn't test me until last October after I had a mmc at 12 weeks (the mc was unrelated to the factor V, as the pregnancy itself was high risk because I was having mo/mo twins).

I'm hoping that the lovenox will help this pregnancy go at least a little smoother!

 

[ElmoBumpToBe]

momomom I havent heard of lovonox, i presume it is a blood thinner? Glad to hear your going to receive the care you need for this pregnancy hun. Has your partner been tested? x

 

[momomom]

He hasn't been tested. My doctor recommended he not be tested (especially if there was no history of dvt or anything in his immediate family) because all it would do is make us crazy. She has a good point, I think!

Lovenox is the american name for clexane, I think.

 

[petitpas]

Hi momomum, are you taking aspirin, too?

 

[ElmoBumpToBe]

Im not petitpas, keep wondering wether i should or not.

Momomom your doctor couldnt have been more right, im really not sure why they were so eager to get my oh tested, all it resulted in was upset when we found out he has it too and there is nothing we can do except it made me want the injections to avoid a clot in the baby even though there is no definate evidence that it will help. Nobody every suggested that my ds's father be tested 3 years ago x

 

[momomom]

I'm not taking aspirin now, but I go to my doctor on the 29th and then I'll have a better idea of what I need to do going forward. I'll keep you updated!

I'm sorry the doctors worried you so much, ElmoBumpToBe. Like pregnant ladies don't have enough to worry about!

 

[ElmoBumpToBe]

Exactly!

I'll keep checking in on this thread, let us know how you get on x

 

[LandN]

hello just wanted to say, that i too have factor 5 leiden, my dad has the double gene so he got it from both his parents, he has a dvt but only got it late on in life, he was fine as a baby, and fine as a child! he didnt even know he had the factor 5 leiden untill he got his blood clot in his leg, ive just inherited the one gene from my dad as my mother hasnt got it. I had hypron after having my daughter and after having brain surgery, but i think i could have done with more care during my pregancy with my daughter, they said i could go on a long flight and never told me to wear stockings or anything!!

 

[momomom]

Hello all! I had my first appointment today with the OB. She said that there have been further tests and research done on pregnant women and Factor V Leiden, and that they don't think it's necessary for women who do not have a history of blood clots to use the anti-coagulant.

I had a placental abruption with my first child during labor, but they never did any tests on the placenta after the birth, so we don't know if it was caused by a clot or by something else. So my doctor has given me the choice of whether or not I want to do the shots. I have until the beginning of January to let her know, so that's something I'll have to think about between now and then.

 

[petitpas]

Hello all! I had my first appointment today with the OB. She said that there have been further tests and research done on pregnant women and Factor V Leiden, and that they don't think it's necessary for women who do not have a history of blood clots to use the anti-coagulant. I had a placental abruption with my first child during labor, but they never did any tests on the placenta after the birth, so we don't know if it was caused by a clot or by something else. So my doctor has given me the choice of whether or not I want to do the shots. I have until the beginning of January to let her know, so that's something I'll have to think about between now and then.

Yep, that is true. If you're not sure about the shots, you could just go with baby aspirin. My local hospital also does extra scans and NSTs on women with FVL to check that the baby is still growing and happy. Did your OB mention any of this?

 

[momomom]

She did not. I'll definitely ask her more about that when I see her next. It definitely makes me a little nervous to not do anything at all when we don't know what caused the abruption the first time around.

 

[Emilyc]

Hello,

I have factor v homozygous both the genes I am 18 weeks 4 days now but have been on fragmin 7.500iu daily and aspirin also.
Having both the genes makes things much harder with regards to pregnancy but nothing else.
I have NEVER had a clot and no medication prior to pregnancy .