While I generally like to keep the atmosphere of this blog
upbeat and positive, life isn’t always such, and this is the story of my
family’s life (good, bad, and ugly). Sometimes it is difficult for me to talk about
certain aspects of my life, but that is the beauty of this blog. I can express
myself in writing in ways I struggle to verbally. This will be a long post, but
I encourage you to stick with it and read it through. It is the result of about
a week’s worth of writing on my part and something that is near and dear to my
heart.
Before I got pregnant with Mia, I suffered two back to back
miscarriages. Not many people knew about these prior to Mia’s birth. They
occurred very early in pregnancy, and were still very painful for me to discuss
at the time. Once I did however, I felt a lot more at peace than I thought I
would. I found it therapeutic, and many people began coming out of the
woodworks to tell me their stories, or stories of people that they were close
to that had similar experiences. Recently, we suffered another miscarriage. I
am writing this post is to talk about that, how it has impacted my family and
I, and where we go from here. This will be a long post, full of personal
anecdotes as well as some biological terms which I try my best to simplify. Now
that you’ve read the full disclaimer, feel free to continue.
To fully understand the repercussions of this latest
miscarriage, I feel the need to provide some details of our journey to grow our
family. I’m not going to get graphic or anything, but if you feel this would be
a difficult section to read, or perhaps trigger painful memories of your own
loss(es) or experience(s), please feel free to skip this part.
We first started trying to have a baby in the summer of 2013, just after our first wedding anniversary. This was something Jason and I had discussed at length both prior to and after getting married, and we truly felt it was the right time. While I was under no delusions that it would happen immediately for us, I will admit that after about 6 months of trying I was starting to get despondent. We started using ovulation predictor kits, and I talked to my doctor to request some testing. They say that prior to age 35, there’s really no need to have these discussions until you’ve been trying for at least one year, but I knew that we were really actively trying, charting and everything, so I felt we should have been successful in our efforts by then. Thankfully, my doctor agreed and we began cursory tests. In May of 2014, I was scheduled to have an exploratory surgery to see if anything was wrong structurally that might be preventing us from conceiving naturally. I was nearing the end of my cycle, so I was instructed to take a pregnancy test beforehand, just to ensure I wasn’t pregnant. While we had been actively trying that cycle, I was honestly dumbfounded to discover that I was indeed pregnant. We finally had a positive test after nearly a year of trying! I went and got blood work done, and it confirmed a very early pregnancy. Jason and I were so extremely excited. About a week and a half after getting this positive test, I was at a conference for work and went to the restroom during one of our breaks. While wiping, I discovered some brownish-colored blood on the toilet paper. I was immediately freaked out and went outside to call my mom. She explained that she felt it was just implantation bleeding, which was fairly common (in fact she’d had it while pregnant with me). This made me feel a little better, so I went back in and continued with the rest of the day’s conference. I had also looked on my phone a few times throughout the day and saw that miscarriages were often associated with bright red blood and often cramping. Since I’d had neither of those symptoms, I felt a little better (though I was still concerned). Later that night after dinner, I discovered that the bleeding had not only increased, but also was shifting to a redder hue. I called the after-hours for my doctor, and got in touch with the doctor on call. I explained the situation, and she suggested we go to the ER since I was unwilling to wait until the next morning to be seen. We did, and testing revealed that I had very low HCG levels, and was, in all likelihood, having a miscarriage. We were completely devastated and heartbroken. I really can’t explain the feeling to you if you haven’t experienced it for yourself, but it was really difficult. About 2 weeks later, I returned to my doctor for a follow up and she told me how common miscarriage is. She also reminded me that had I not taken the pregnancy test for the surgery, I probably wouldn’t have even discovered I was pregnant; just would have thought my cycle was a bit late. I asked about trying again, and she suggested waiting until my normal period returned. She said that can take a bit longer after a miscarriage, and not to be alarmed if it didn’t come in 4 weeks. They did confirm that day that my HCG levels were back to 0, indicating that the miscarriage was what they deem “complete”. That next month, we didn’t chart my cycle or use ovulation tests. About 4-5 weeks after my doctor’s appointment, (7 weeks after the miscarriage had ended), I still hadn’t gotten my period back. I honestly didn’t think much about this because I knew that it could take a while to return to normal. I did start to feel a little weird. My boobs were getting really sore, and I started to feel nauseous after eating. Since, at this point, I was hyper alert for any signs of pregnancy, I decided to take a test to find out (I was stockpiling them by this point). The test came back positive! You honestly could have knocked me down with a feather at this point. Now, I knew it wasn’t just remainder HCG from the previous time, because my levels had returned to zero. I immediately called the doctor to schedule an appointment, and when the receptionist asked the typical “when was your last menstrual cycle” question, I had no answer because I had no period! I explained that I had had a miscarriage about 7 weeks prior, so that I was probably about 5 weeks along, maybe a little more depending on when I had actually ovulated. I scheduled an appointment for the earliest they agreed to see me, when I would have been about 7.5 weeks (based on what I had guesstimated). They did send me in to get blood work done just to confirm everything (and yep, pregnant!). About a week after I called to schedule the appointment, I started bleeding again, and this time I knew exactly what that meant. Another miscarriage. Another heartbreak.
This time at my follow-up, the doctor ran what’s known as a “recurrent miscarriage panel”. This tests for certain genetic anomalies, as well as hormone levels. She instructed us to wait at least 2 menstrual cycles before trying again, and to use protection to avoid another “oops” like the last time. When the tests came back, I was found to have a conditioned called MTHFR, named after a particular gene sequence. I’m not going to go into vast details about this condition, but it is important to know a little about it in order to understand what we did next. Everyone has 2 sets of chromosomes, 23 pairs. You inherit one set from your mom, and one from your dad. Now, many times, you can be what is called heterozygous for a trait. This means, (in a nutshell), you have one dominant and one recessive copy of a particular gene. If you are heterozygous for MTHFR, your body does not convert folic acid into methyl folate (the metabolically active form that little beans need for neural tube development) as efficiently as a person who is homozygous dominate (2 functioning copies of this gene). Someone who is homozygous recessive (meaning 2 non-functioning copies of this gene), like me, have an even harder time converting folic acid. Generally, we convert it about 25-30% of the time, while a heterozygous person would be about 75% and a homozygous dominate 100%. Recessives and heterozygotes can also have problems with clotting during pregnancy. Sometimes, in later pregnancy, it can lead to blood clots in the placenta or umbilical cord. Not good.
It was also discovered that I have low progesterone at 7 days post-ovulation; for those of you who know anything about a woman’s cycle, that is the time at which progesterone is the highest to ensure proper implantation should fertilization have occurred. A woman’s body is responsible for producing progesterone to maintain a pregnancy until the end of the first trimester (approximately 12-13 weeks), at which time the placenta takes over from there.
Still with me? Sorry it’s a lot of biology, but I’m getting to the point!
While all of this information was difficult for me to process, I was glad that at least we had answers. We knew who the ‘bad guy’ was, so to speak. So, after receiving all of this information, we returned to my doctor for a game plan. I was getting ready at this point to start my second post-miscarriage period, which meant we were about ready to start trying for another pregnancy. My doctor recommended a three-pronged attack to combat each aspect of my condition. First, she advised a low-dose aspirin regimen to overcome/prevent the risk of clotting. Second, she prescribed supplemental progesterone to be taken from ovulation through my 13th week of pregnancy to combat my low levels. Third, she gave me additional folic acid vitamins (beyond regular prenatals) which would give me about 4x as much as the typical woman takes to overcome my body’s shortfalls in converting folic acid.
Now, about 3 weeks later, I got a positive ovulation test. Small side note here, I have a short luteal phase, which also makes things a little bit more difficult. If you chart, you know what that means. If not, here’s a brief overview: the average menstrual cycle is approximately 28 days. Day one is the first day of your period, and you count forward from there until the next one starts. Most women ovulate around day 14 of their cycle and have approximately 5 days per cycle in which they’re considered “fertile”, or able to conceive. From the time after ovulation through the first day of your next period is called the “luteal phase”. So thus, most women have a luteal phase of about 2 weeks. My many months of charting had lead me to discover that I generally ovulate around day 17-18 of my cycle (which were generally 29 days in length). So, back to the point, I had already been taking the aspirin and folic acid since seeing my doctor, and after the positive ovulation test, I began the progesterone too. It was in this cycle that we conceived Mia.
We first started trying to have a baby in the summer of 2013, just after our first wedding anniversary. This was something Jason and I had discussed at length both prior to and after getting married, and we truly felt it was the right time. While I was under no delusions that it would happen immediately for us, I will admit that after about 6 months of trying I was starting to get despondent. We started using ovulation predictor kits, and I talked to my doctor to request some testing. They say that prior to age 35, there’s really no need to have these discussions until you’ve been trying for at least one year, but I knew that we were really actively trying, charting and everything, so I felt we should have been successful in our efforts by then. Thankfully, my doctor agreed and we began cursory tests. In May of 2014, I was scheduled to have an exploratory surgery to see if anything was wrong structurally that might be preventing us from conceiving naturally. I was nearing the end of my cycle, so I was instructed to take a pregnancy test beforehand, just to ensure I wasn’t pregnant. While we had been actively trying that cycle, I was honestly dumbfounded to discover that I was indeed pregnant. We finally had a positive test after nearly a year of trying! I went and got blood work done, and it confirmed a very early pregnancy. Jason and I were so extremely excited. About a week and a half after getting this positive test, I was at a conference for work and went to the restroom during one of our breaks. While wiping, I discovered some brownish-colored blood on the toilet paper. I was immediately freaked out and went outside to call my mom. She explained that she felt it was just implantation bleeding, which was fairly common (in fact she’d had it while pregnant with me). This made me feel a little better, so I went back in and continued with the rest of the day’s conference. I had also looked on my phone a few times throughout the day and saw that miscarriages were often associated with bright red blood and often cramping. Since I’d had neither of those symptoms, I felt a little better (though I was still concerned). Later that night after dinner, I discovered that the bleeding had not only increased, but also was shifting to a redder hue. I called the after-hours for my doctor, and got in touch with the doctor on call. I explained the situation, and she suggested we go to the ER since I was unwilling to wait until the next morning to be seen. We did, and testing revealed that I had very low HCG levels, and was, in all likelihood, having a miscarriage. We were completely devastated and heartbroken. I really can’t explain the feeling to you if you haven’t experienced it for yourself, but it was really difficult. About 2 weeks later, I returned to my doctor for a follow up and she told me how common miscarriage is. She also reminded me that had I not taken the pregnancy test for the surgery, I probably wouldn’t have even discovered I was pregnant; just would have thought my cycle was a bit late. I asked about trying again, and she suggested waiting until my normal period returned. She said that can take a bit longer after a miscarriage, and not to be alarmed if it didn’t come in 4 weeks. They did confirm that day that my HCG levels were back to 0, indicating that the miscarriage was what they deem “complete”. That next month, we didn’t chart my cycle or use ovulation tests. About 4-5 weeks after my doctor’s appointment, (7 weeks after the miscarriage had ended), I still hadn’t gotten my period back. I honestly didn’t think much about this because I knew that it could take a while to return to normal. I did start to feel a little weird. My boobs were getting really sore, and I started to feel nauseous after eating. Since, at this point, I was hyper alert for any signs of pregnancy, I decided to take a test to find out (I was stockpiling them by this point). The test came back positive! You honestly could have knocked me down with a feather at this point. Now, I knew it wasn’t just remainder HCG from the previous time, because my levels had returned to zero. I immediately called the doctor to schedule an appointment, and when the receptionist asked the typical “when was your last menstrual cycle” question, I had no answer because I had no period! I explained that I had had a miscarriage about 7 weeks prior, so that I was probably about 5 weeks along, maybe a little more depending on when I had actually ovulated. I scheduled an appointment for the earliest they agreed to see me, when I would have been about 7.5 weeks (based on what I had guesstimated). They did send me in to get blood work done just to confirm everything (and yep, pregnant!). About a week after I called to schedule the appointment, I started bleeding again, and this time I knew exactly what that meant. Another miscarriage. Another heartbreak.
This time at my follow-up, the doctor ran what’s known as a “recurrent miscarriage panel”. This tests for certain genetic anomalies, as well as hormone levels. She instructed us to wait at least 2 menstrual cycles before trying again, and to use protection to avoid another “oops” like the last time. When the tests came back, I was found to have a conditioned called MTHFR, named after a particular gene sequence. I’m not going to go into vast details about this condition, but it is important to know a little about it in order to understand what we did next. Everyone has 2 sets of chromosomes, 23 pairs. You inherit one set from your mom, and one from your dad. Now, many times, you can be what is called heterozygous for a trait. This means, (in a nutshell), you have one dominant and one recessive copy of a particular gene. If you are heterozygous for MTHFR, your body does not convert folic acid into methyl folate (the metabolically active form that little beans need for neural tube development) as efficiently as a person who is homozygous dominate (2 functioning copies of this gene). Someone who is homozygous recessive (meaning 2 non-functioning copies of this gene), like me, have an even harder time converting folic acid. Generally, we convert it about 25-30% of the time, while a heterozygous person would be about 75% and a homozygous dominate 100%. Recessives and heterozygotes can also have problems with clotting during pregnancy. Sometimes, in later pregnancy, it can lead to blood clots in the placenta or umbilical cord. Not good.
It was also discovered that I have low progesterone at 7 days post-ovulation; for those of you who know anything about a woman’s cycle, that is the time at which progesterone is the highest to ensure proper implantation should fertilization have occurred. A woman’s body is responsible for producing progesterone to maintain a pregnancy until the end of the first trimester (approximately 12-13 weeks), at which time the placenta takes over from there.
Still with me? Sorry it’s a lot of biology, but I’m getting to the point!
While all of this information was difficult for me to process, I was glad that at least we had answers. We knew who the ‘bad guy’ was, so to speak. So, after receiving all of this information, we returned to my doctor for a game plan. I was getting ready at this point to start my second post-miscarriage period, which meant we were about ready to start trying for another pregnancy. My doctor recommended a three-pronged attack to combat each aspect of my condition. First, she advised a low-dose aspirin regimen to overcome/prevent the risk of clotting. Second, she prescribed supplemental progesterone to be taken from ovulation through my 13th week of pregnancy to combat my low levels. Third, she gave me additional folic acid vitamins (beyond regular prenatals) which would give me about 4x as much as the typical woman takes to overcome my body’s shortfalls in converting folic acid.
Now, about 3 weeks later, I got a positive ovulation test. Small side note here, I have a short luteal phase, which also makes things a little bit more difficult. If you chart, you know what that means. If not, here’s a brief overview: the average menstrual cycle is approximately 28 days. Day one is the first day of your period, and you count forward from there until the next one starts. Most women ovulate around day 14 of their cycle and have approximately 5 days per cycle in which they’re considered “fertile”, or able to conceive. From the time after ovulation through the first day of your next period is called the “luteal phase”. So thus, most women have a luteal phase of about 2 weeks. My many months of charting had lead me to discover that I generally ovulate around day 17-18 of my cycle (which were generally 29 days in length). So, back to the point, I had already been taking the aspirin and folic acid since seeing my doctor, and after the positive ovulation test, I began the progesterone too. It was in this cycle that we conceived Mia.
Mia is our beautiful rainbow baby, and my pregnancy with her and her birth and life thus far are well documented in this blog. If this is your first time to read my blog, feel free to go back and learn all about our most precious gift. To us, she is truly a miracle and proof of the beauty of modern medicine and scientific advancement.
That concludes our “back history”. Now I’ll delve into this
most recent miscarriage.
When Mia was a few months old, we started discussing when we
might consider having another baby. We were in no way ready for another just
yet, but we thought maybe when she was around 2 years old might be a good time
to start. As she got closer to two, and potty trained, this tentative plan
became more concrete. We had a cruise planned for the end of May, just after
her 2nd birthday, so we settled on starting to try a few months
after returning. I actually had my yearly well woman exam scheduled for just
before the cruise, so I discussed our plans with my doctor at that point. I
went back on the aspirin and folic acid in preparation. Because it had taken us
nearly 18 months to conceive Mia, I really didn’t think we would be able to get
pregnant in less than 6 months. Imagine my surprise when I got a positive
pregnancy test the second cycle we tried (in August)! At first, I was a bit
skeptical. Since I had 2 miscarriages early in pregnancy, I waited a whole week
before calling my doctor, despite taking about 5 pregnancy tests (all
positive!). We scheduled my ultrasound for the day I was to be exactly 8 weeks
along. I wanted sooner, but my doctor’s office really doesn’t want women coming
in before they are 7 weeks, and the entire 7th week my doctor was
scheduled for vacation. I also kind of figured if I had a miscarriage, it would
be by then anyway. We finally got to 8 weeks, and I was in full blown nausea
mode. I was having all the same symptoms I had with Mia, albeit to different
degrees, so I felt pretty confident at this point that I was indeed pregnant.
Still, it was a huge relief to see that little flutter on the ultrasound. Baby
had a heartbeat, was moving, and was a good size! All my bloodwork also came
back normal; progesterone was good and HCG levels were in normal range for the
8th week. We scheduled my next visit for 12 weeks, another ultrasound
for the first screen. Over the next 4 weeks, I got even sicker, more “pregnant
feeling”, and we started to tell people about the pregnancy. The further we
got, the more confident I felt. I had no cramping, no bleeding, and my belly
was even starting to grow beyond just normal first trimester bloat.
We went into the 12 week ultrasound pretty happy. It was an early morning appointment; we were the only ones in the office. We went back and I got the gel on my belly. The sonographer started moving the wand around. I saw the pregnancy sac and baby immediately, but remember thinking, “hmm, that’s smaller than Mia was at 12 weeks.” I thought maybe she just hadn’t zoomed in enough yet, but then she said, “I’m afraid I have some bad news. This baby looks really small for 12 weeks and I cannot find a heartbeat. I’m afraid you might have miscarried.” She did a few more measurements and confirmed that the baby had stopped developing at just under 9 weeks, only days after our last ultrasound. She left the room to get the nurse, and I just stared at the (now blank) screen on the wall. Jason came over to hug me, but I just kept staring at that screen. The nurse came in to move us to another room, and I was kind of in a daze as we walked down the hall. Once we got settled, it finally hit me what had just happened. I immediately started crying hysterically. We sat in that room for about 20 minutes waiting for my doctor to review everything. Once she came in, she hugged me and confirmed everything. We had lost our baby. No heartbeat. I was so confused because I really thought we had figured out our problems when it came to getting and staying pregnant. What had happened? Why had it happened? I had so many questions that I knew couldn’t be immediately answered.
I explained that I was still having symptoms, why? She told me that my body was playing a cruel trick on me, it hadn’t caught up to the fact that the baby had stopped developing, so all of my hormones were continuing on as if I were still pregnant. She also explained that I had three options going forward. I could go home and wait to see if the miscarriage happened naturally, go home with medication to encourage the miscarriage along its way, or have a D&C. If you don’t know what a D&C is, I’m not going to explain it here. It’s a surgery; you can investigate the remaining details.
We went into the 12 week ultrasound pretty happy. It was an early morning appointment; we were the only ones in the office. We went back and I got the gel on my belly. The sonographer started moving the wand around. I saw the pregnancy sac and baby immediately, but remember thinking, “hmm, that’s smaller than Mia was at 12 weeks.” I thought maybe she just hadn’t zoomed in enough yet, but then she said, “I’m afraid I have some bad news. This baby looks really small for 12 weeks and I cannot find a heartbeat. I’m afraid you might have miscarried.” She did a few more measurements and confirmed that the baby had stopped developing at just under 9 weeks, only days after our last ultrasound. She left the room to get the nurse, and I just stared at the (now blank) screen on the wall. Jason came over to hug me, but I just kept staring at that screen. The nurse came in to move us to another room, and I was kind of in a daze as we walked down the hall. Once we got settled, it finally hit me what had just happened. I immediately started crying hysterically. We sat in that room for about 20 minutes waiting for my doctor to review everything. Once she came in, she hugged me and confirmed everything. We had lost our baby. No heartbeat. I was so confused because I really thought we had figured out our problems when it came to getting and staying pregnant. What had happened? Why had it happened? I had so many questions that I knew couldn’t be immediately answered.
I explained that I was still having symptoms, why? She told me that my body was playing a cruel trick on me, it hadn’t caught up to the fact that the baby had stopped developing, so all of my hormones were continuing on as if I were still pregnant. She also explained that I had three options going forward. I could go home and wait to see if the miscarriage happened naturally, go home with medication to encourage the miscarriage along its way, or have a D&C. If you don’t know what a D&C is, I’m not going to explain it here. It’s a surgery; you can investigate the remaining details.
Since I had been carrying this baby for 3 weeks after it had stopped developing, she recommended I choose one of the latter 2 options to avoid potential complications or infection. I thought back to the 2 miscarriages I had before, at home, and how difficult those were at just ~6/7 weeks gestation. They were painful, emotionally and physically, and really drawn out. Like a long, painful reminder. I wondered how long a miscarriage at 9 weeks would take, and how I would feel. Jason and I talked it over for a while, and decided a D&C was our best option. Another benefit of this option is that the tissue, mine and the baby’s, could be sent off for testing. As a person who likes answers, this was something I wanted. We were thankfully able to schedule the surgery for the following morning (I really didn’t want to wait too long), and we went home to tell our family the bad news.
Two weeks after the surgery, I was able to get the results of the genetic and pathologic testing. Our baby had Turner Syndrome, which is a condition responsible for approximately 15% of miscarriages (in cases where the cause is known). For those that do not know, in this condition, there is only one sex chromosome, a single X, instead of 2 (XX for female and XY for male). These babies are still considered to be female, because a Y chromosome is required to be biologically male. Only 1% of Turner Syndrome pregnancies result in a live birth. If you’d like to know more about Turner Syndrome, the research is out there. While this of course wasn’t good news, it is about the best news we could have hoped for in this situation. This miscarriage was a total genetic fluke; unfortunate, but also unlikely related to our previous miscarriages. My uterine cells appear to be healthy and capable of sustaining another pregnancy, which was also a relief to me. It is so easy to blame yourself when things like this happen.
There are so many emotions that come after a miscarriage. Sadness, confusion, anger, guilt, shame… and they all come in waves. Everyone who experiences this has a different, and very personal reaction to the situation they’re in. I can’t really talk much about my emotions in the weeks since my D&C, because they have been all over the map. I still have a little one to care for, a house to maintain. We still have to cook and clean and grocery shop and pay bills. I have times I feel happy and nights I cry myself to sleep. It’s a roller coaster that you never get off of. I still think about the baby I was carrying, and I think of her often. She was our daughter and she is loved. We will carry her with us always.
Despite everything that has happened, I am hopeful for the
future. We already have one beautiful rainbow baby, and hopefully with time we
will have another.
If you stuck with me this long, I thank you for taking the
time to read this post all the way through. I welcome private messages with
questions or other thoughts/experiences that you feel like you want to share. For
anyone else struggling with infertility, or pregnancy or infant loss, I’m here
and I’m listening. For anyone who just wants to understand more about these
things to provide some level of comfort to other friends and loved ones, I’m
here and I’m listening.
