Dear KAB,

I am so very sorry to hear about the loss of your daughter Katelyn. It is an absolutely devastating thing to happen to any family and there is nothing that I can really say that will make it any easier for you.

As Tootie said though, it takes a lot of courage to post and share your pain and please feel free to post and vent whenever you need. Importantly take all the time that you need to grieve. I am also very glad that your husband is so very supportive of you. There is support on this site for him too should he want it.

About FV Leiden. You are correct it is a blood clotting disorder that places people at increased risk of getting blood clots in their legs and lungs more than people who do not have FV Leiden deficiency. It causes blood clots in both arteries and veins because the clots are unable to be broken down by our bodies anticlotting mechanisms because the FV is abnormal. It is genetically inherited. Most people who have this gene are carriers for it, and so may pass it onto their children (1:4 chance if your partner does not carry the gene). The blood clots affect the placenta in that they may cause it to infarct (like in a heart attack), or may just decrease the blood flow through it and lead to poor fetal growth.

As to how it is treated - I am not sure whether you would have even had time or the energy to talk about this with your doctor. I am not a haematologist, but from my understanding the evidence of whether to treat or not is mixed. It is said that FV Leiden only increases the risk of miscarriage (and it is usually late miscarriage during 2nd trimester) by 2%, and thus the evidence would suggest that there is not much benefit to treating unless there is a background of repeated fetal loss and 'high risk mum' ie, smoker, obese etc - that is things that make the problem worse. The evidence does not say that treatment is necessary otherwise, but I would imagine this information would be of little comfort to anyone who has just been through your experience.

If you do receive treatment, it is usually in the form of blood thinning products and usually involves injecting yourself with heparin once a day (through a needle like people with diabetes). This thins your blood and prevents clots. You would need to continue this treatment throughout your pregnancy and some weeks after giving birth, and then could stop. You would also need to see an obstetrician and a haematologist (blood doctor) thoughout your pregnancy for frequent check ups.

I am not sure that there are other alternatives for treatment.

In time, when you feel stronger make sure you have a long chat about the options with your doctors.

Thinking of you and hugs,

Regards,
Gabby