Miscarriage Story of Hope: PCOS, MTHFR, Blood Clotting Disorder, Ectopic Pregnancy & Recurring Miscarriages

by Kristina Smith

At the age of 14, I was diagnosed with Polycystic Ovarian Syndrome (PCOS). I was “lucky” in that at the time it was on the leaner side of the syndrome.

As I grew older, my menstrual periods were out of control. I was always in pain, would go months without a period, uncontrollable weight gain, and my hormones were all over the place.

Baby #1

Once I got married and decided to start a family, conceiving our son took about 6 months. I ended up with Severe Preeclampsia and he was born a month early during an emergency c-section. He had a week long visit in our local NICU that was an hour and a half away from our home. I battled anxiety and postpartum depression shortly after, and sought medical help. It was a very scary time in my life, as I felt no connection to my baby. I finally got the help I needed and I gained control of my illness.

Baby #2?

My husband and I wanted our children to be close in age, so once our son was about 2 years old, we tried for our second baby.

By this time, my weight had skyrocketed and my blood pressure was still staying high, I sought help from my OBGYN about my PCOS issues and the fact that I was not getting a positive ovulation test each month.  After an ultrasound and some blood work, it was determined my left ovaries were covered in cysts. Most of my eggs were only being released from my right ovaries.

She was real with me on what it would take to manage my PCOS, and that my chances for conceiving a baby again were slim.

I went out to my vehicle and cried for about an hour….within that hour, I made up my mind that I would lose the weight I needed to lose (50+ pounds), take the Metformin pills, and do the birth control shots to get my PCOS under control.

1 Year Later

A year later, I had lost over 50 pounds and was still on the Metformin pills, when I finally started ovulating. Over the next few months, I would take pregnancy tests and notice a faint positive that would disappear in a few days. It was to the point that I had my husband look at them to make sure I wasn’t just seeing things. I finally decided to make a “confirmation” of pregnancy appointment with my OBGYN when I received the next faint positive. Sure enough, my blood work came back positive but within a few days I was bleeding, and I knew then I was having a miscarriage. I was 6 weeks pregnant at the time of the miscarriage and I felt a pit in my stomach, even though the whole process was somewhat the same as the terrible periods I was used to having, I knew it meant I had a big problem somewhere because this had happened so many times before.

We were given the ok to try again, and we were pregnant within the next two cycles. I went in for blood work to confirm, and we kept an eye on my HCG levels to see if they were going up as they should. My numbers were low but they doubled as they should, except for my Progesterone level. It was very low, so we started pills in hopes of that being our answer…however it wasn’t. A week later I started bleeding again, and I knew we had lost it too. We did an ultrasound this time to see if anything looked abnormal. All they could find was a fibroid on my uterus, but it shouldn’t have caused my miscarriages.

I started a vitamin regime of Iron, Vitamin D, and COQ10. With PCOS, the egg quality can be on the lower end, so we thought that could be our issue.

Again?

5 weeks later, I had a follow up appointment and my doctor asked me if I had a period yet, and I said no. Out of concern, they did a urine test that came back blazing positive. We determined I ovulated early after the miscarriage, and blood work looked great. About a week later, I was having lunch at work when I had an awful pain in my lower region. I could barely stay seated and when I stood up, it hurt so bad. I called my doctor who had just received my last blood work reading, and she told me to get there immediately. My HCG levels did not increase, in fact they stayed the same…which meant a possible tubal pregnancy. They did an ultrasound and determined the egg had attached in my right fallopian tube. I was so incredibly nervous about losing my tube, but for a reason we would later found out….the pregnancy had already started terminating on its own. All I could think about was how incredibly lucky I was to not have to have surgery or lose my tube, but at the same time I worried because my body could not even sustain the tubal pregnancy.

Breaking Down

Something was definitely wrong for an egg to not even thrive in that kind of scenario. We were told to take a 3 month break from trying from our OBGYN, and during this time, I had a breakdown. This loss affected me more than the others had, emotionally speaking. I wanted to give up, I wanted to take it as a sign that this was not supposed to be, and my dreams of having another child seemed so far out of reach. Did I really need to pursue this still? What if the next time, it did sustain in my tube? What if it kills me? I had a son to think about. A little boy needed his mom to be around, but my heart needed another baby too…so we decided to see a Reproductive Specialist.

Reproductive Specialist

ART Fertility of Alabama ran a full PCOS panel on us, and we started out by doing monitored cycles. This meant we were starting Letrozole, doing ultrasounds to check ovary size, HCG shots to release the eggs that looked promising, going back for bloodwork to check Progesterone levels, and then the pregnancy blood test to confirm if it all worked. We got pregnant that cycle, and continued our weekly HCG monitoring, until suddenly it dropped again. I started bleeding, and our HCG numbers fell to zero again. Our doctor was beyond empathetic and he agreed that there was something else causing us an issue that we had not found yet. He advised us that it would be a “trial and error” type situation, that we would add some baby aspirin to the mix and a few vitamins to see if that could help our egg quality.

We did another monitored cycle, and ended up pregnant again. This time the blood work soared, and we were able to go to our first ultrasound to see the baby. Something we never got to do with our others because we always lost them right before the appointment. They advised me when I walked in the exam room, that sometimes it is hard to see anything, and to be patient and take things with a grain of sand until they received the bloodwork. The ultrasound showed a tiny blob that was located in my uterus where it should be, which was a blessing in itself…but what it didn’t show was a heartbeat. Remembering her words, I reminded myself to wait for the bloodwork. We were on cloud 9 until I got a phone call later that evening, confirming the worst. There was no heartbeat because the pregnancy was not progressing, my HCG levels had begun to fall. Days later the bleeding came, and my faith was all but lost.

Giving up?

I did not want to do this again. I was NOT going to do this again. My husband and I stayed up the next few nights going back and forth on adoption, on doing an IUI, on doing IVF. I caught myself looking at our local adoption gallery and just crying because in my heart I knew what I really wanted, and it hurt me that I couldn’t have it. I had done everything asked of me by our doctors and it still was not enough to keep a viable pregnancy.

Never Lose Hope

It wasn’t until I received a care package in the mail from our reproductive staff that I allowed myself to really process what had happened to me in the past months. In the package there was a brochure, the words “Never lose hope” rang through every page. I knew I could not give up, but I also knew it was going to take a lot of prayers and a lot of science, both working together to get me my rainbow baby. I posted our story on facebook, along with a picture of our care package we had received. One by one, I was getting messages from those that were having issues as well. For the first time in a long time, I felt normal and not alone.

A New Plan

Little did I know, our doctor had a new plan, and he was determined to find a cause for our losses. I did a HSG test, which was where they run a catheter and flush out your fallopian tubes in hopes of removing any debris or obstructions that may be blocking or hindering an egg , I started a strict diet, and I did a recurrent miscarriage blood work panel. We set up what would be our final monitored cycle, as we decided we would give it one last try.

Answers

Before we even began, we received the news of my blood work panel. It showed I was positive for the heterozygous PAI-1 4G/5G blood clotting disorder, as well as MTHFR meaning I had a mutation on both genes of my DNA. This wasn’t the worst blood clotting disorder to have, but it wasn’t the best either. It meant I would need blood thinner shots, (Lovenox) to sustain a pregnanacy. I was beyond ecstatic to learn of this news. We began the monitored cycle with 3 ovaries that matured and ended up pregnant again. We started the Lovenox shots right away as well as the baby aspirin, and Progesterone. We saw our baby on ultrasounds, watched as she grew stronger and bigger each week, and was finally able to breathe, even in a global pandemic.

My Rainbow

I gave birth to our beautiful little rainbow baby in July of 2020, with one visitor (her daddy) in the middle of the peak of Covid-19. She was born healthy and remains the same. Shortly after giving birth, I ended up back in the emergency room due to blood clots in each of my lungs. After a week in the hospital without visitors, a week without seeing my 5 year old and my 2 week old, I was released and have been doing great. Since this journey began, I have lost 80 pounds, gained a beautiful rainbow baby, and strengthened my faith in our Lord Jesus. I still believe to this day that I endured such darkness to enjoy the true light it brought afterwards. Never lose hope.

Q & A with Allison, Founder Miscarriage Hope Desk

How many miscarriages & how many live births? 

5 known miscarriages, 1 ectopic, 2 live births 

Plesae provide the details of your live births. 

My son was conceived naturally when I was 25 years old and my daughter was conceived with fertility medication at age 29 years old

Looking back, what, if anything, do you wish you would have done differently? 

I would not have beaten myself up so bad about things that were out of my control.

What were you told was the cause of your miscarriages? 

PCOS, blood clotting disorder, MTHFR mutation, egg quality

What do you truly believe was the cause of your miscarriages? 

Blood clotting disorder and lack of blood thinners

What advice would you give to someone going through recurrent miscarriage? 

It seems like a never ending battle, but just about the time you are ready to give up is when the miracle happens. Cry often, grieve as much as you want, pray, and know that it takes a little Science too. 

Never lose hope.