some big news, a.k.a. what is going on with me

some big news, a.k.a. what is going on with me

I haven’t been talking very openly about some of my struggles the past year, but now I think it is time. I’ve confided in some of my close friends, but I’ve been trying to get the courage to write about it here, on my public blog.

A little background first. As many of you remember, I had a miscarriage 3 years ago, before we got pregnant with Savannah. Miscarriages are not uncommon, and many times there is no explanation for why the baby is lost. We wanted our kids to be around 2 years apart, so we started trying again after Savannah’s first birthday. Here we are, over a year later, and still no baby.

The truth is I *HAVE* been pregnant and have miscarried during this past year – multiple times. All total, I’ve had 4 miscarriages (including the first one, 3 years ago). They have all been under 7 weeks gestation. I think the hardest one was in July because I was the farthest along and my best friend got pregnant at the same time as me – we would have been due 10 days apart! Multiple miscarriages have done a number on me emotionally. It hasn’t helped that I can’t get away from the pregnancy and birth announcements, at church and among my group of mom friends. I will probably write a separate blog post about that, as I think it would make this one too long, and I still have more to say.

After the 3rd miscarriage, my wonderful midwife highly recommended I get some bloodwork done. Last week, the results came back with two diagnoses.

One of them was that I have Factor V Leiden (FVL), which is a genetic blood clotting disorder. It has implications outside of pregnancy (blood clots, strokes, deep vein thrombosis, pulmonary embolisms), but with pregnancy it’s led to stillbirths and miscarriages.

I also am homozygous for the Methylenetetrahydrofolate reductase (MTHFR) C677T gene mutation. “Homozygous” means I have 2 copies of the mutation – as in, I got it from both sides of my family. Mutations in the MTHFR enzyme inhibit the body’s ability to absorb B folates, specifically folic acid. It’s a blood based disease, so it also has risk associations of strokes and blood clots.

I have an appointment with a hematologist on December 6th, and I hope to have a lot of my questions answered. Until then, we are going to hold off trying to get pregnant until we more fully understand the risks associated. My biggest fear right now is another loss – specifically a late term loss.

Here is what I’ve found out so far, from my midwife, perinatologist, and from internet research:
– FVL means I will need to be on anticoagulants throughout the duration of my pregnancies. These blood thinners are typically in the form of a daily shot that I will have to give myself. I am supposed to call the peri as soon as I get the positive pregnancy test and this will continue until I go into labor, when they will switch me to a different anticoagulant for the first six weeks.
– MTHFR means I will need a high dose of folic acid and perhaps some other vitamins. I have been taking folic acid this whole time (regular prenatals make my tummy sick), so I will have to up the amount I’m taking.
– I will be considered high risk for my pregnancy. Apparently, this means increased prenatal visits and having to pay a lot of attention to the baby in the third trimester especially to watch for potential red flags. Kick counts, etc.
– High risk also means it is likely in my best interests to deliver in a hospital. For those who know me and my current passion for the birth center, I have been really grieving about this.
– I can’t ever take hormonal birth control. Fortunately, this won’t change anything as I have never taken it nor do I have any plans to. I am so, so grateful of the convictions that God gave me back before I got married – they could have saved my life.

I have so many other questions to ask the hematologist. How do FVL and MTHFR affect each other? What else do I need to do to have a healthy pregnancy and bring a baby to term? How many kids will I be able to have? What are the chances of another loss – is it worth even trying again? Should I recommend others in my family (including Savannah) get tested? Are there diet and lifestyle changes that will improve my chances of not only a healthy baby, but just a healthy life for me specific with these blood disorders? Do I have to be careful with medications? Are my migraines related to this at all? Do I need to wear a medical ID bracelet?

This has all been overwhelming to me. Ever since my midwife called me with the news, I have been really scared about what this means for me and for my future. It feels weird knowing that I could die of a stroke at 28 years old. I know, I’m taking worst case scenario right now. You just think that if you die young, it’s going to be a car accident or something, you know? From what I’m learning, knowledge is everything. They have only really started studying these in the past decade or so. With the knowledge of both FVL and MTHFR, we can be on the watch of potential strokes and blood clots.

I would really covet your prayers right now. For us, as we make the decision after the hematologist’s appointment about whether we should continue our family. If we decide not to, for peace for me about that decision. If we decide to go ahead, then prayers that God would spare us from any more heartache. That He would give us a problem-free pregnancy and delivery. And that He would give me peace about not being able to have the intervention-free delivery like I had with Savannah.

19 thoughts on “some big news, a.k.a. what is going on with me

  1. I have some of these similar issues and a few others (currently on bedrest at 33 weeks because of them) and take Lovenox (blood thinner injections) every day. It’s scary, but very manageable. I believe you will be ok. Take heart, my dear. Praying.

    -Char

  2. Oh Ashley, my heart breaks for you. Diagnosis can be so scary, sometimes it just gives you more specific things to worry about. After a year and a half of trying to conceive myself, I’m terrified of seeing a fertility doctor. It’s the only way forward, but I still cling to the slightest chance that things will just magically work out on their own, that there is somehow nothing wrong with me, even though I know there is. But it does sound like with this diagnosis you do have hope with the help of your doctors, whether the risks/rewards are worth it for your family only you two can decide. If it were me I would consider a few visits to a therapist, someone emotionally detached from the situation, it might help you sort things out. I can only imagine the trauma of multiple miscarriages, the cycling between hope and despair. It seems that problems with fertility pervade your entire life, it’s so hard to escape from the pain for long when there are reminders everywhere of what you so desperately want.

  3. Oh wow… I hope that things will work out well and that you will find peace. Having a diagnosis can be a very good thing, but it can also be intimidating. I’ll keep you in my prayers and much love to you <3

  4. I’m so sorry to hear that you have to go through all of this. It certainly doesn’t erase or minimize what you’re dealing with, but sometimes it helps just knowing that other people understand and have “been there.”

    I have Rh disease, and while it’s not the same as what you have, it’s a blood disease which means all of my pregnancies are high-risk with lots of tests, close monitoring, and hospital deliveries. I got it while pregnant with Gwen because our blood mixed and mine created antibodies which attacks the “foreign” matter – eg the baby. I was devastated and scared to death; for some reason no one understood my concern… until they realized what I actually had and the implications.

    Each subsequent pregnancy has the potential to be at more risk than the previous, so it really makes it hard to decide whether or not to have more children (we’ve been talking/praying about it now that Josiah is almost two). The potential risks to the baby are serious; we have to think about the possibility of brain damage, specifically those related to hydrocephalus, which could mean paralysis and other complications. *sigh* How do you gamble with that?

    My condition is untreatable. How hopeful that there are things you can do to get around these issues – supplements, blood thinners, etc. It’s overwhelming because you’ve been dealing with the loss and now coming to terms with the diagnosis. I think, once armed with knowledge, the know-how of what to do to take care of yourself and a possible pregnancy, you’ll feel better about the whole thing.

    Sending prayers your way!

  5. First of all, I am so sorry about your multiple losses. :-( Heartbreaking.

    2nd, I am so glad to hear you have some answers, and that there are treatments which work. Vitamins are not scary.. obviously the blood clotting deal is much more intimidating.

    3rd, whatever you decide, you will be awesome. A family of 3 (which was not really my plan either) is awesome. A family of more than 3 is also awesome. Tracking down drs who will work with you to be as natural as possible while keeping you + baby safe is awesome, too. God does not say “Hey, you can only wear the green shirt today or else you’re outside my plan,” there are a lot of different things that happen in life. Do whatever you need to do to stay healthy and minimize your stroke risk down the road.. that’s always good.

    Pretty sure my SIL has the folic-acid deal also, it wasn’t explained by name to me, but the symptoms & treatment sound VERY familiar. She & her sister both have it & both have successfully had babies while taking *tons* of folic acid. I believe either her older sister or mom did go through a group of losses similar to yours before this was discovered.

    –LCB

  6. Ashley, I’m so sorry.

    Our God is a God of miracles. My pregnancy was high risk and frought with so much fear from the possibility of chromosomal abnormalities to irregular heartbeat to my having to hit this kid with prescription migraine drugs every single day when there was no true research to know if it was safe or not. And God protected him through all of it.

    I don’t know what God’s plan is for you–having only one child or several. But whatever it is, it is good. Sometimes it’s just hard for us to realize the goodness in it when we’re going through trials. I was the opposite in that I was not too thrilled when I found out I was pregnant. I was happy in my childless life. But now I’m calling Alex the gift I never knew I wanted. God has a way of working on our hearts like that.

    The passage I clung to during a scary pregnancy was Psalm 62, specifically verse 2: Truly he is my rock and my salvation; he is my fortress, I will never be shaken.

  7. Ashley, you are so brave for sharing this. You are such a gentle and wonderful mother and a beautiful person. Reading this made me realize (as a person like you who often wants no interventions and is hesitant to rely on doctors, etc) that medicine truly is amazing. I’m glad the bloodwork has begun to provide some answers and I hope at and after your follow-up appointment you can find peace. Sending you a big hug and lots of love. <3

  8. I’m so sorry. I’m glad to know what you’ve been going through but I haven’t known what to say. It’s heartbreaking news. I’m glad you have the knowledge of why, even though it’s scary. *hug*

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