Thursday, August 15, 2013

Thoughts About the Future

   I need to stop reading journal articles, they don't help. I'm trying to understand as much about anencephaly as possible, but, no one really knows anything. I read two things today that concerned me:

  1. Maternal obesity is a definite factor in anencephaly. This makes me so sad. If I had been looking for a way to blame myself (which I'm not) then that would be the perfect reason. If my weight were the cause, I would lose it because I see so many women who are morbidly obese and don't even care who have normal, healthy children. I've struggled with my metabolism my entire life and I exercise and eat a very healthy diet and it would really be unfair if that is the cause of Denali's anencephaly. But, there it is.
  2. The risk of a recurrence of anencephaly with a subsequent pregnancy is 3-5%, in general. I thought those odds weren't too bad until I read a journal article that described the risk as being the same as taking thalidomide! Everyone remember that wonder drug? It was given to women in the  1950's and '60's for morning sickness. It caused major birth defects and led to an epidemic of "flipper babies". It was removed from the market in 1962. I don't think there is a sane woman on this planet who would willingly take thalidomide during pregnancy. But, taking thalidomide has the exact same risk of birth defects as having a child after having an anencephalic baby! That blew my mind.

   All of that led me to thinking about my future fertility. For ten years or so it has been my greatest desire to have children. I want so badly to bring home a healthy child! The question that I'm asking myself now is, would it be completely irresponsible of me to ever become pregnant again, knowing the risks? I could not live with myself if this happened to another child. I suppose that's a question for our genetic counselor, but I think she will give me the same information that I already have. 
  For a few weeks now, I've had it in the back of my mind to have a tubal ligation during the C-section. Willingly giving up my fertility would be excruciatingly painful, but worth it to protect other children from dying. And as John pointed out, at 30 years old I probably only had another good five years of fertility anyway. 
  All of this will depend on the results of mine and Denali's genetic tests, of course. If Denali has a chromosomal abnormality, such as Trisomy 18 (which is associated with anencephaly) then I would be more comfortable trying to become pregnant again. If I don't have some sort of balanced translocation or something that would cause future children to be at risk for the same abnormality, that is. If, however, it turns out that I have a MTHFR mutation, then I will strongly consider tubal ligation. The risk of recurrence in that case is too high. If no abnormalities are found at all, then I'm not sure what I will do. It comes back to the 3-5% risk of recurrence. 

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