This one is for Jack. No quote needed.

In my previous blog posting, I said that we learn from some of the hardest things in life. When I said that, I meant it, and I mean it still. I just didn’t know how right I was until this afternoon.

We had a Doctor’s appointment today to discuss the results of my blood work that was taken as a part of my follow-up from loosing Jack.  Like I mentioned previously, I tested positive for a genetic defect called MTHFR. I am one in 200,000 Americans to have this blood disorder. Today we learned more about what that means in detail.

Essentially, when you test positive for MTHFR you can have a few different things happen. The gene can have one allele C677T be defective, or you can have another allele A1298C be defective. If you have just one of either, generally speaking, you are ok. If you have each of these, times two, lets say, that is extremely bad, as you have a very high risk of blood clots and a thus a higher risk of heart attack, stroke, etc. I fall in between these ranges. I happen to have both defective alleles, but just one set of each. This means that I am 4 times more likely to have a stroke or heart attack by the time I am 45-50 years old. Also it means that I am at a much higher risk of loosing pregnancies.

The higher risk of loosing pregnancies comes from what these mutated alleles within the gene do to my ability to absorb Folic Acid. Essentially, my body has never absorbed the appropriate amount of this nutrient which is vital for the development of not only me, but any baby I might carry. This is also why I have trouble absorbing things like Iron or B12, because the lack of Folic Acid in my blood has let homocysteine build up- thus blocking nutrient absorption. (I’m sorry if this sounds very technical but I am trying to put it as simply as I can). Excess homocysteine also leads to an increase in blood clots.

Blood clots can sometimes build up around a baby within the womb of its mother in the placenta. Effectively blocking nutrient flow to the child. Clots can also form around the base of the placenta, causing tears or holes in the membranes which can sometimes lead to pre-mature water breakage. Now this does not mean that this is exactly what happened with us and Jack, it is simply a likely possibility. We will never know the real answer to how or why this happened physically, we have no true way to “point the finger”.

So what do we do now?

Well, for the rest of my life, I will always have to take 4 prescription strength folic acid pills a day (basically 4X what a normal person needs). And along with the folic acid, I take a baby aspirin to keep my blood thinner and a B12 supplement (that was my idea) just for safe keeping. My doctor is also sending me to a hematologist to have my blood evaluated further to see if I need to be on any stronger blood thinners like  Koumadin. (I will probably always have to see a hematologist).

If and when we decide to try to have a baby again, we can, but we will always be in the extremely high risk category. I will not have trouble getting pregnant, it will be staying pregnant that will be the challenge. With the regiment I am on now, I will continue it during pregnancy but with much higher doses of folic acid (10 times higher to be exact) as well as the baby aspirin until my 25th week. I will most likely also be given the progesterone shots and I will be seen by a high risk OB and my regular OB simultaneously. They will do everything possible to help us maintain pregnancy.

But for right now, we are focusing on honoring Jack and his memory. Because not only has he saved my life, he has potentially saved the lives of my family members because we now know about this condition. Everyone can be tested and potentially life changing action can be taken, all because of him.  At first, it felt like there could be no good reason for loosing our son, our baby boy. But now, I know that he has helped more people literally in one day of life, than many people do in their lifetimes. And he was here to show us that we need to take care of our bodies and ourselves so we can live and honor him.

Here’s to Jack.

~EH

 

 

 

 

 


 

 

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