The answer

My midwife called me with the results of the blood tests. Seth had a blood clot in his cord. I have MTHFR (the mother-father gene) or (methylenetetrahydrofolate reductase). This gene causes blood clots, misscaraiges, strokes, heart disease…

This MTHFR gene does not allow amino acids to convert into other amino acids and eventually leads to important protiens not being able to be made. Its amazing that Seth made it to the size that he did before he passed away. Ussually babies of mothers who have MTHFR die in early weeks as an early misscariage.

There are many risks to having more babies. They could get a clot again, I could misscarry before I even get to far, they could be born with spina bifida, autism, (any type of neural defects). I am praying for my next pregnancy in the future to be healthy. My family has had a lot of healthy pregnancies. Theres no reason for me to surpass those risks with the treatments there are today.

I was told when I am ready to have a baby again that I need to have a “pre-pregnancy consultation” to make sure Im taking high doses of folic acid before I get pregnant. I will need to take asprin and possibly other blood thinners or extra B vitamins.

Its a 50/50 chance. Its terrifying. To know that my next pregnancy will be lived out in total fear= TERRIFYING. I was sick to my stomach all day waiting for a phone call. Im glad to know that we have the chance to take precautions for the next one but its so scary to know that I could possibly have multiple losses. As much as I dont want Seth to be alone up there, he has Jesus, I dont want to send him more brothers and sisters for my sanity’s sake.

I could or could not have problems having more children. my midwife told me “each pregnancy is a risk and you must be prepared for what might happen”.

Yes Im a little angry. So many people spit out kids with no problems and I have a genetic disorder that could stop my babie’s developement at any time that it decides to silently attack. I will be worried until the last minute of my next pregnancy. I would probably be happy to induce at the moment my doctor says im ready. Its scary, I dont want to hurt any of my children.

Now I know… Life is short. I am different.

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10 responses to “The answer

  1. Hollie,

    I am so very sorry about your precious Seth. I can’t imagine such a loss and I can certainly understand how scared you are to try again. It seems so unfair that some people have to struggle so much for what comes easily to others.

    Because you have the MTHFR polymorphism you have a limited ability to break down folic acid into its active form, L-methylfolate. You might want to ask your doctor about L-methylfolate as an alternative to folic acid. I work with NeevoDHA which is specifically indicated for women with MTHFR. Folic acid is synthetic and must be broken down in a four-step process. L-methylfolate is the natural and active form of folate which is immediately usable for DNA synthesis and repair. It is just a piece of the puzzle to consider.

    I wish you the best of luck trying to conceive. I don’t know if you are a member but Babycenter has a very large community of women with pregnancy losses who have MTHFR. They have been in your shoes and have a wealth of information to share.

    I will be crossing my fingers for you for a positive pregnancy test and healthy pregnancy in the near future.

  2. NeevoDHA is a prescription prenatal indicated for women with MTHFR. It is usually covered by insurance plans. It would be great if you could start as soon as possible. As I am sure you know, adequate folate status is most vital while trying to conceive and in the first weeks of pregnancy.

    If you go to Babycenter, look for the Lovely Lovenox Ladies and MTHFR TTC groups. Almost everyone who has had repeat pregnancy loss on the boards has MTHFR and many of them have gone on to have successful pregnancies. The most important thing is to do your research. MTHFR treatment is controversial and it is very important to be educated about your condition when you are talking to your OB about possible treatment plans. I think you will feel a lot less lost when you realize how many people are in your shoes.

    I will keep you in my prayers.
    Holly

  3. I checked out the NeevoDHA which looks lovely but I currently have no insurance, which is partially why I am holding off going back to my OB and partially why we are waiting to TTC :(. I hope something works out soon though so I can get on some type of folate, Ive been reading some and I’m almost certain that this is probably what has caused my anxiety all my life (I remember doctors asking me at 10 years old what could I possibly have anxiety for, “your a child for goodness sakes”) and I bet it will make me feel so much better.

  4. Hollie,

    You can also find L-methylfolate over the counter in a smaller dosage. You can find 800 mcg Metafolin (the brand name for L-methylfolate) on amazon.com. Let me know if you cannot find it.

  5. Thank you so much. We also have an Ada’s health food around the corner here that may have it, I just thought of it this morning. Can you take too much? Im not sure what a correct dosage would be pre-pregnancy. My mom was never tested but she has had all the signs of MTHFR and I would love to have her take some just for the mental(anxiety) benefits and physical (heart disease- which runs in the family) if not anything else. I found this interesting article that will probably explain our moods to my husband lol.
    http://www.doctoroz.com/blog/tanya-edwards-md-med/underlying-causes-depression

  6. Folate is a water soluble vitamin so any excess is excreted. NeevoDHA has 1.13 mg.

  7. I relate to a lot of what you wrote about in this blog. Thank you for sharing. I lost my first (and only so far) son Luke at 39 weeks 6 weeks ago. I have a preconception consultation in 2 weeks, so it’s nice to hear that others have those also. They took 10 vials of blood from me too and I just got my blood test results on Monday, but I don’t even know what they tested for, so I think I will ask about the MTHFR you mention when I have the appointment in 2 weeks. My son had a blood clot in his cord as your Seth did, but the doctors told me it likely happened after his death (I don’t know how they would know this). I know from reading your more recent posts that you went on to have a healthy baby girl and that gives me hope. I hope God has been blessing you and bringing you comfort.

    • Ill keep you in my prayers. Time will not heal but it will help you live. Just take one day at a time. They said that Seths cord clot could have also been from post death and it’s just because scientifically your blood clots once you die because you have no more regulation of your bloods thickness…. Ive also learned some things just recently. My midwife had given me fluconozole at the time which is not really recommended for pregnancy and kind of made my new ob upset.
      The pre-conception visits were worth it! I loved every minute of them checking me all of the time because I didnt feel so worried. Thanks for reading. My daughter has given me a reason and I know that God will bless your family too. Hang in there, I hurt for you 😦

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