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frankiecali
05-06-2003, 11:30 AM
Ok this is a weird question..ithas to do with samantics (sp??) but I have to know....

I lost my daughter at 24 weeks gestation. I am in PERFECT health - no diabetes, perfect weight, young (i am 24) etc. etc. Bascically I am an OBGYN's "ideal candidate" for pregnancy. I even got pregnant the first time I tried (both times). When I was 24 weeks along my water began to leak. I tested positive for the MTFHR (I am heterozygose) for it. If this mutation is UNTREATED (like i was in my first pregnancy) the chance of repeat miscarraige or fetal death is 25%. If treated you have a less than 1% chance of fetal loss (like all women do - so it is basically 100% treatable)

Now my doctors will NEVER tell me they are sure that the mutation caused everything to happen the way it did...although it does appear that the way I lost the baby was because of a placental abruption (due to a blood clot in the placenta) which is how women with the MTHFR mutation often loose their baby if untreated.

Well, here I am again - I got pregnant very quickly after losing Simone - the first month of ttc. I am of course being treated for what cause my original loss. So here is my question -

Do you think I am "high risk"??? My doctors say I am "at risk" but not high risk - HUH!?????

Also, based on the inforamtion I disclosed do you think I lost my daughter because of the mutation or some other freak reason?? it does seem logical to assume that i lost her because of my mutation right!?? I wish the doctors could give me a straight answer already...

Sorry for all the questions..I guess I am trying to see how much I should be worrying because for some strange reason I am so at peace that it freaks me out!!

Edited to Add: SOmetimes I feel like now I have less of risk because they tested me for EVERYTHING and i was fine, and they already know what is wrong and it is being treated...UGh do i make ANY SENSE !?? :)

THANK YOU THANK YOU THANK YOU for helping me..

Jennifer

bromsmom
05-06-2003, 11:48 AM
jennifer, I am so sorry for your loss! ((Hugs))
what does MTFHR stand for?
hugs and prayers,
Heidi

Denisemac96
05-06-2003, 12:17 PM
Jennifer, I just wanted to point out to you that our friend Becky (momtoanangel) has this same clotting disorder and is being treated for it. I am not too sure if she is being considered "at risk" or "high risk" or what the difference between the two is for that matter.
I know that this is such a stressful time, trying to figure out all of the answers you possibly can. Sometimes though, there just isn't a clear cut answer and as scary as it is, we have to rely on our faith. I know that I struggled with this issue throughout my pregnancy. I was not considered "high risk" or even "at risk" for that matter. But I consiered myself to be very much "at risk" for all of the emotional stress I was under. I spoke with my doctor and explained that even though I may not medically fit the term "at risk" I wanted to be treated with all of the extra care and attention because I was a "high matienence" pregnancy. I needed all of the reassurances of someone who had suffered a pregnancy loss and wanted to be able to talk through my fears whenever I needed to as well. He was very understanding about this and it has worked for me so far. I want you to know that you are in my prayers and although I can offer you no reassurances, I will just again offer my support and friendship.
((((HUGS)))) don't doubt that peace you feel. It is your gift from Simone, I know it.

Chelsey
05-06-2003, 12:42 PM
*Lurking from AFI*
I've read quite a bit about the MTHFR mutation. A woman I met lost twins at 20-some weeks from a placental abruption. After her loss she was diagnosed with the MTHFR mutation.

From what she said, this whole area of research is pretty controversial. Some doctors don't believe that the mutation has anything to do with pregnancy loss, and others do. She is treated by some of the best docs in the country (the reproductive endocrinology team at Cornell), and even they aren't in total agreement. Not that you asked for advice, but her docs routinely recommend extra folic acid and Heparin/Lovenox therapy during pregnancy to combat the clotting problems that come with an MTHFR mutation.

Anyway, my friend (who will start an IVF cycle in July) will regularly see a perinatologist and will be treated as a high risk patient if she conceives. However, the Lovenox therapy negates most of the risk.

Congratulations on your pregnancy, I hope everything goes well.

frankiecali
05-06-2003, 12:53 PM
Chelsey -

Interesting...I am also taking 4 mg of folic acid and baby aspirin. There was no need for me to take herparin however due to the type of mutation i have. ( OF COURSE I LIKE THE ADVICE!!! - THANKS!!!)

I have NEVER EVER heard any doctor question that the MTHFR mutation does cause a loss. If you are homozygous. HOWEVER if you are heterozygous (meaning you have 2 mutations) than I firmly believe it causes a loss. Homozygous mutation is common - about 30% of the population has it..therefore I would say that both sets of doctors are probably right. having one mutation probably does not cause it...having a double though...that i think truly does. Momtoanangel (my friend Becky) also lost her baby at 39 weeks and not only does she have the MTHFR mutation she has a DOUBLE mutation like me. I just can not believe that there is that much of a coincidence...(Denise - Becky and I were totally freaking out when we realized we BOTH had that mutation and losses..it was so exciting in a weird way of course!!)

Susan
05-06-2003, 02:15 PM
Your story sounds kind of similar to mine. I lost my son at 30wks for no apparent reason. I had a chronic placental abruption with no signs and I do not fit any of the risk categories. I was tested for all kinds of stuff and so was the baby. It turned out that I have the same thing as you - MTHFR mutation - but everything else was fine. They didn't say that it is the reason, but it may be linked. IF I had 2 mutations, then they could point to that for the loss - but I don't. I know that I will never have a definite answer about what happened. For me it's even more confusing because I have 2 healthy daughters and had absolutely no problems with those pregnancies.

I am considered high risk because I have also had 2 m/cs several years ago, I'm 35 and have experienced an abruption. Having had an abruption puts me at a slightly higher risk of it happening again.

My drs have recommended that I take baby aspirin when I get pregnant again and I will be watched much more closely next time. They did not mention taking extra folic acid - right now I'm taking prenatal vitamins with folic acid, though.

Good luck!