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.