Monday, June 29, 2009

Follow-up

I feel the need this evening to follow up my last posts with some thoughts.

I read here that, "Approximately 44% of the population is heterozygous and another approximate 12% are homozygous for the MTHFR mutation." That seems like an awfully large percentage to me, and I doubt that many women have had the problems I've had. Maybe there are other factors in this MTHFR mutation that cause pregnancy loss that we just don't understand yet.

I also read on the March of Dimes site that, "There are no good estimates on the number of affected individuals in this country." I also read here that they won't even offer to test you for thrombophilias unless you've had a past blood clot (which I did not), or, "...a history of pregnancy complications, including two or more miscarriages, stillbirth or placental abruption due to undetermined causes," (which I obviously had). It's so sad though that I had to loose even one of our babies before tests would even be ordered to make this diagnosis. I know research is being done, and I hope someday soon there can be an easy way to screen all women for these potential complications.

Also, with the more that I read I am feeling more confident that it is the thrombophilia that caused the deaths of our babies. March of Dimes says that, "The thrombophilias also may contribute to pregnancy complications including fetal loss and placental abruption," (which I had one of each). I also learned that, "Pulmonary embolus is the leading cause of maternal death in the United States," and, "studies suggest that up to 80 percent of pregnant women who develop a pulmonary embolus or other VTE (venous thromboembolism) have an underlying thrombophilia." I would do anything for my children if it means saving their lives and nothing can make up for their deaths in my opinion, but maybe their deaths weren't completely in vain. Maybe with the awareness of my diagnosis due to their demise, they may have helped prevent my death caused by a VTE or pulmonary embolism. This is a rather morbid thought, but I know that even though we have been profoundly affected by the deaths of our babies, I know that my death would have a harsher impact on more people.

I would also like to say that maybe I was hasty in being so critical of my perinatologist on her not suggesting the Folgard (super duper folic acid and B complex vitamins) initially. Maybe I should take responsibility and view it more as a partnership and be glad that I found someone who is willing to take my concerns seriously rather than just dictating treatment especially with something that appears to be a new field of study. I have always considered myself an educated consumer, but paradoxically I have always struggled with being assertive in my concerns. I am always so concerned about offending someone, but I am learning to look out for my own best interest and the interests of my family. And I feel I made a big step in that direction today by educating myself and expressing my concerns to my doctor.

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