Hi Margot,

I am the member who Tootie was telling you about that has FVLD.

I am the opposite to you in that i found out i had the disorder in the testing that followed after i lost my first child at 18 weeks gestation in March last year.

Now i want to stress that the opinions differ as to the affect that FVL can have on pregnancy. I have consulted several doctors and specialists about the effects and also the treatment during pregnancy for this condition. One specialist which i consulted in Perth felt that he has treated hundreds of women with FVL in pregnancy without any anti coagulants and they have not suffered any pregnancy losses, so basically the medical community is not convinced that FVL can cause pregnancy loss, however my OB and GP couldnt rule it out in my situation given that i lost my daughter later into the pregnancy.

My mum and dad had nine miscarriages and i am an only child so it was assumed that my mum had passed the gene onto me and that had also caused them to lose so many babies. However it turns out that it is my dad who passed it on to me and therefore wouldnt have had any affect on their other babies and apparently it is just coincidence that he has the disorder and they lost so many children.

Now on the positive side, i am currently 35 weeks pregnant. When i found out i was pregnant with this child i started on 100mg of aspirin daily until i consulted the specialist in Perth at 7 weeks pregnant. He advised me that there is no medical evidence to suggest that Clexane has a more positive affect than just aspirin taken on its own. In the US they tend to be more aggresive with their treatment and usually give both aspirin and Clexane. Im not sure if you know much about these two drugs but they both work in different ways to alter the clotting cascade. My understanding is that aspirin will prevent a clot from forming but Clexane will stop a clot forming and disolve one that has formed. My decision was to go onto Clexane until 20 weeks and then reassess the situation at that time. I figured if they discovered that the aspirin had not stopped a clot from forming then i would be given clexane to disolve it. At 20 weeks when i again consulted the specialist in Perth he advised me that there is no documented evidence to suggest that my staying on clexane for the rest of the pregnancy increased my chances of a healthy baby. Now as you can imagine my anxiety levels about this baby are extremely high because of what happened to our daughter. So my choice was to stay on the clexane for the duration of the pregnancy because all i know is that i have had one pregnancy without Clexane in which my daughter passed away and one pregnancy with clexane which is growing a very healthy baby. Now having said that i also understand that the clexane might not have had any affect at all and this baby is making it on its own steam but i myself cant take any risks because of what we have been through already.

I want to stress that having FVL doesnt mean that you are going to lose a baby, as i said the medical profession seem to have different opinions about the effect that this disorder has on pregnancy. Im sorry that my story isnt a more positive one for you to hear but like i said i am weeks away from having my baby by elective csection on my OB's recommendation and this baby has had the benefit of me having the injections and is perfectly healthy.

Last but not least, the needles are not as bad as you think. They come in prepackaged boxes of 10. They are disposable so that you dont have to measure out any quantaties. I was totally needle phobe (and still am of someone else in control of a needle), my first thought was to get my hubby to do it but honestly it is easier if you do it yourself. My tips are insert the needle in quick, just take a deep breath and push it in, it resists at first but you will be suprised how quickly it will go in. Then push the plunger down slowly, the quicker you do it the more it will hurt and the more it will bruise. The fattiest part of your tummy is the least painful and try to alternate sides so you are not constantly injecting into one side of your tummy. I know how scary it all sounds and i was absolutely petrified but i just kept the baby in my mind and now i have done almost 200 injections which i find amazing looking back on how i felt about doing it in the first place. It will sting after you have taken the needle out for a little while but just press fairly firmly on the spot for a couple of minutes and this will help. Some days hurt more than others but after about 2 weeks you will realise that you can only hurt yourself so much and you will learn what techniques work for you.

Good luck with a healthy pregnancy and conquering the needles.

If you need anything just reply, i hope that i havent scared you with my story but you have an advantage over me, you know about the disorder before you get pregnant. I suggest that you do a lot of research and ask lots of questions of your doctors and then make an informed decision about which road of treatment to take. What was right for me isnt right for everyone.

Love Sarah